HumanSwimmingPool

New Directions

2011-04-11T18:04:00.008+01:00

Hi all,
Been really busy lately with a new venture. Due to the fact that my job change 18 months ago resulted in me taking a big pay cut I've been looking at ways of supplementing my income and came up with the idea of affiliate marketing.
For those that don't know, affiliate marketing is a method of promoting or reviewing other people's or company's products and then (hopefully) earn a commission if people go on to buy that particular item.
The way I've done it is through building websites dedicated to the products in question which then link through to the product's vender. It sounds somewhat complicated but generally it is straight forward if you know what you're doing but the initial work is quite time consuming when you're learning the ropes.
I've got a fair idea what I'm doing now and have produced a number of websites that have created interest especially ones that are linked to online gaming strategy guides for games like World of Warcraft and Rift. I've also got a kidney diet website up and running too.
Anyway here's some of the websites that I've set up. Feel free to have a look and comment

www.kidneydietsecretsreview.com

www.riftwalkthrough.com

www.wowmaps.net

www.howdoigethimbackreview.com

As well as this I've re-registered this blog so now you only have to put in

www.humanswimmingpool.com

Much easier.

Obviously this has resulted in a few start-up costs, hence why I've added some adverts to the site. Any pennies that I earn can then be reinvested into developing the marketing business. One advantage of marketing is that if and when I end up on dialysis I can have something to do whilst hooked up to the dialysis machine for 4 hours 3 times a week. See, I am able to think ahead occasionally

Will write again soon

Kidney Diet-ing

2011-03-16T22:51:00.008Z

Hello again,
Just a quick post to let everyone know I'm alive and kicking. I've been thinking recently about my diet and how I've gone off the rails somewhat. I used to be very enthusiastic and well disciplined in making sure that I kept to a low salt diet, low fat diet, monitored fluid intake etc, but as soon as I got used to one restriction then another one came along. The final straw was to keep to a low phosphate diet, which I mentioned in an earlier post. Having to cut back on so many things I liked, like dairy products and coke was just too much, so I slipped back somewhat
I'm not saying I'm reckless when it comes to food and drink but I'm sure my consultants wouldn't be impressed if any of them could see what I'm eating and drinking nowadays. For the most part I feel a lot better mentally as a result although I'm sure it will probably hasten along my eventual visit to the local dialysis suite.
Anyway I've had a look around and found some details about some kidney diet books that may well suit some people in a similar position to me. There's a list of books on a particular website that appear quite comprehensive although there doesn't appear to be any reviews. It's an American site but you still might be able to find them cheap on Ebay

Here's one of the books listed. Titled "Cooking for David (not me but another one!) it's half story, half recipe book about developing a menu for a family member on dialysis. It includes recipes for both diabetic and non diabetic dialysis patients and has got a lot of positive comments on the various kidney forums.
There is a website devoted to the book which includes "recipe of the week" I suggest you have a look and see what you think

http://www.culinarykidneycooks.com/

Anyway here's a website address for you to check out some other books that are available. I hope you find what you're looking for. The one thing I will say is that because they're listed on National Kidney Foundation's site then that certaainly instills credibility in them

http://www.kidney.org/professionals/CRN/cookbooks.cfm

Anyway, now that I've finally posted for the first time in a while I'll try not to leave it too long for the next time. I've got a lot of news, just need to motivate myself to type it.

Last thing. For those of you that may have wondered, Naomi's family in Japan are safe but obviously with the ongoing aftershocks and what's haappening at that nuclear power station it's still a worrying time.

Bye for now

It must be fate - Phosphate

2010-06-20T12:10:00.001+01:00

Health News

Obviously it's been quite a while since I last updated but that doesn't mean there's been little going on, quite the reverse actually, and a real mixed bag it has been. The reasons (excuses actually) for being away from the keyboard for so long have been a combination of lack of time, lethargy, laziness and "couldn't be bothered". After my latest bit of news (more of that later) which I then phoned around to a number of people I remembered why I started this thing in the first place i.e. to stop me needing to phone loads of people with my latest news!

Anyway enough of the prevaricating and on with the update. My last outpatients' appointment went really well. All the numbers were good like Cholesterol (4.5), eGFR (39), Protein leakage, B.P, weight etc which resulted in my Prednisolone being reduced to 25mg (was 30mg) every other day. Creatinine was slightly up rom 255 to 175. However there was the usual sting in the tail and that was my phosphate levels were higher than they should be (1.54) and I was going to have to discuss this with the Renal Dietician. I knew that would mean that I would have to reduce and/or eliminate some foods that I really like. I can't wait for the day when I'm told that either

a) Under no circumstances whatsoever are you to eat Cabbage, Broccoli, Brussel Sprouts, Curry or Beetroot (all things that I absolutely detest)

b) I'm sorry Dave but you don't have enough beer in your diet!

As a group of individuals Dieticians have this uncanny knack irritating the hell out of you in their persuit of assisting you to become a healthier individual. Not their fault though but I'm sure they get a perverse pleasure out of asking you to avoid the the types of food that you actually take pleasure in consuming. I know the day will come when I walk into the room the dietician will have this great big smile on their face, just prior to telling me I've got diabetes and no more sugar in my Gold Blend! That may be the day when there is one less dietician in the world! Anyway my suspicions were confirmed when I was told that I would have to reduce my dairy product input resulting in no more than 1/2 pint of milk a day, 2-4 eggs a week, try not to have any more yoghurt than just the probiotic one I have each day, no more than 2 cans of coke a week, and cut out pilchards (which I've been eating a lot of because I thought they were healthy!) Anyway this link gives you an idea of what a low phosphate diet is (click here). Bearing in mind the fact that I'm already supposed to be pursuing a low salt and low fat diet as well as being careful with my fluid intake, this kidney disease lark is no cake walk! HAHA

So after coming to terms with the new addition to my already restrictive diet it was obvious that it wouldn't be long before the big fella upstairs decided to throw something new at me and lo and behold he (or maybe she or it) did. I noticed there seemed to be some deterioration in my sight in recent months especially when it came to reading and more recently with the improved weather and increased sunshine things seemed quite hazy when I went out. It was a bit like having a slightly dirty windscreen on your car . You don't notice it until there is bright light and it seems to defract the light making everything have a sort of misty ethereal look. Nice when it's applied to Lord of the Rings but extremely aggravating when trying to work out who that person walking towards you is as their face looks a bit like someone has pixelated it to protect their anonymity! I came up with 3 theories as to what was happening
1) Cataracts
2) My FSGS had maybe something to do with it, possibly related to the risk of high blood pressure (which, admittedly has been well under control for a long time now)
3) The high levels of diuretics I was taking may have dried the eye out in some way.

Well I booked and attended an opticians appointment and receved the diagnosis of steroid induced cataracts!. As usual, as soon as I got home I met up with my old mate Google and found this page which covered it all quite well. It looks like I have Posterior subcapsular cataracts.
This description sums up what I'm experiencing perfectly

Posterior subcapsular cataract

Here the opacity is limited to an area just beneath the back surface of the lens in a plate like manner. The rest of the lens may be quite clear. It usually starts centrally on the line of vision and extends outwards. Because the opacity is close to the point where light rays entering the eye cross even small amounts of posterior subcapsular cataract may affect vision severely. This is particularly so under certain lighting conditions, e.g. bright sunshine, when the patient may experience disabling glare or dazzle. However under subdued indoor lighting the vision may be relatively unaffected. Although this form of cataract can occur for no particular reason it may be caused by long term use of systemic steroid medication or trauma to the eye.

From http://www.cataractcare.co.uk/what_is_a_cataract_more.php

The optician wrote down the details for my GP who I see on Thursday June 25th, who I then presume will refer me to the ophthalmology dept. Apparently, from what I've read surgery can be performed before the cataract has fully ripened. If this is the case then I want it done as soon as possible especially because my job is changing (more of that later) It looks like the type of surgery I will have is something called Phacoemulsification (whatever the hell that means) but there's a few videos on youtube of it (not for the sqeamish). Here's one, I'll update when I know more

When I see the G.P. I'll take the opportunity to talk to him about another problem I've been having for quite a few months now (might as well get the full sefvice in one visit) and that is tenderness I've been experincing around my naval and a small palpable lump that I can feel. A friend of mine thinks it might be a small hernia that could have occurred when my stomach became very extended due to the fluid retention I experienced at the start of all this. It makes sense to me so maybe I'll be referred to a surgeon as well. Oh deep joy! On top of all this I'm having to fork out £270 for new glasses!!!!!!!!!!

I think that just about covers my latest episode of the series "How Much Can I Get Out Of The NHS This Time?" but there's bound to be more, probably following my next Renal appointment on August13th.

Family News

We had our local Highland Dance competition recently at the Scotland in Colchester weekend. Sumi managed to come away with a 3rd place medal in the Flora and a 3rd place trophy in the Trophy Fling. This meant that she has now completed all the stamps necessary at Novice level in order to move up to Intermediate. She still has a number of dances to perfect so she won't be competing now until probably the new year as the system works differently at Intermediate level. As soon as you compete in your first Intermediate competition you are only at that level for 1 year before going to Premier Level so there is no point competing when you don't know some of the dances fully. Anyway here's a couple of photos from Colchester

I managed to take a couple of videos also that you may wish to watch (Just click on the links)

http://www.youtube.com/watch?v=3CxY28JEJBk

http://www.youtube.com/watch?v=wx3cILLMjOw

Sean has been having some short visits to his school that he'll be starting in September. I have no worries about him settling in as he abandoned me as soon as we entered the classroom and got quite upset when it was time to leave! I reckon the teachers will have their hands full with him though. He's one very lively chap! Recently he said to me "I go to Nursery on Thursdays don't I Daddy?" I replied "Yes and in September you go to big school" to which he responded "And I'm going to wind up Sumika!" Little monster LOL

My work is changing. As mentioned previously the residential home where I work is closing shortly and all the people living there are being discharged from NHS care to the private sector. The non qualified staff are being TUPE'd across but all the the Qualified Staff are being reassigned to new NHS posts. This will be happening mid August. I'm transferring to a Community Nurse post. At present I have been working 1 day a week with the team which will increae to 2 days a week in the next month and finally full time from 10th August. My new collegues have been fantastically supportive and have made me feel at home which is great. For the first time in my Nursing life I will have my own desk, not one that I share with about 10 other people, which is a bit strange. I'm just waiting for the PC to be put on it before I can work on it though. At the moment I just nick any desk that happens to be free. So, initially, no change there then it seems. Obviously, because of the driving I need to get my eyes sorted as soon as possible as my sight will continue to deteriorate. After 20+ years of working in residential care it's going to take me a while to adjust to working as a Community Nurse. My current health problems just add to the difficulties.
One of these days life might start seeming easy but it hasn't for the past 45 years!
A final thought. When I have my op will I be a sight for sore eyes?
Will update soon
Tata for now

And now for some-fling completely different.

2009-09-06T08:31:00.000+01:00

Sumika had her latest dance comp yesterday in Welwyn Garden City and came away with a gold in the Highland Fling and a bronze in the Sword Dance. This was a great result seeing as she was dancing with children up to 3 years older than her.

Whilst there we were told about a former World Highland Dance Champion who has a son diagnosed with Muscular Dystrophy. He is currently trying to raise money for the charity in general and his son in particular. One way that he is doing this is taking his (obviously) immense dancing skills and using them to do an extraordinary dance routine based on the Highland Fling. Normally you would only see a 4 step or 6 step fling but he has videoed himself doing a 40 step (plus an extra 2 for good measure) fling. This is impressive enough but the speed at which he does it as well is phenomenal. It's at least 3 times faster than any competition speed I've witnessed.
I hope he is successful in his venture and managed to raise the much needed funds for his son Logan.
I don't know him but I can only imagine how heartbreaking it is to have a much loved and wanted child born and then discover that it has a disease that will probably lead to a premature death following years of physical deterioration.
It certainly puts my disease into perspective and I am more than happy to post links to the site and video for people to view and donate to if they so wish. I'll just point out that I have not been asked to do this and I am not asking anyone who reads this to donate. That would be rather impertinent I feel and it is each to their own in my view.

http://toeandheel.com/flingforlogan/

http://fortystepfling.blogspot.com/

Next update will probably be at the beginning of May following my next appointment on April 30th.

The Good, The Bad and The Sickly!

2009-05-08T09:28:00.000+01:00

Well the last year finally caught up with me and the stress levels of dealing with F.S.G.S. and proposed changes to my future employment resulted in me going off sick for a couple of weeks. This added to 2 weeks Annual leave gave me a month away from an area that I haven't been happy in for quite a considerable time and the opportunity to recharge my batteries. On the physical front I haven't been doing too badly, weight has been fluctuating around the 90Kg mark and my blood pressure has been well under control. I'm continuing to administer my E.P.O. Injections every week and have commenced my Intra Venous Iron Infusions every Monday morning for a 5 week period. MyHb levels are now 11.2 meaning I'm still anaemic but at least it's heading in the right direction. I asked if this is just a one-off course or will be repeated in the future? I was told they "overload" the system to really boost my Hb levels but because of my reduced kidney function they will eventually fall back and I'll have to go through the process again. Deep joy!
Looking at my copy of my G.P. letter sent by the Renal Dept, my list of drugs takes up half the page!

Cyclosporin 150mg, bd (twice a day) - Immunosuppresent
Prednisolone 30mg, alternate days - Steroid
Metolazone 2.5mg, as required - Diuretic
Furosemide 160mg, bd - Diuretic
Lansoprazole 30mg, od (once a day) - Prevents gastic prblems
Atorvastatin 80mg, od - Lowers cholesterol levels
Ezetimibe 10mg, od (Latest addition to my drug regime, to deal with my cholesterol)
Irbesartan 300mg, od - Lowers blood pressure
Amlodipine 10mg, od - Lowers blood pressure
Rasilez 150mg, od - Lowers blood pressure
Quinine sulphate 300mg, od - Prevents cramps
Nystatin 1ml, qds (four times a day) - Preventsa oral thrush
Corsodyl mouthwash 10ml, qds - Kills oral germs
NeoRecormon 4000 subcutaneous injection weekly - E.P.O. (stimulates Red Blood Cell Production)
Intra Venous Iron weekly

And just to think, a year ago I hardly ever took paracetamol let alone any other drug!

At my last appointment I was expecting my blood results to be a bit iffy, due to the fact that I'd been away on holiday for a week (more of that later) and had obviously been eating all the wrong things and was quite knackered but remarkably that wasn't the case. Apart from my Hb levels improving, there was a drop in my protein leakage and creatinine levels were down to 155. Basically according to my Consultant my Renal function appears to have stabilised but I'm not counting my chickens as I have already been previously told that my trait of F.S.G.S is a particularly aggressive one and the long term prognosis for my kidneys is not brilliant. Having said that the time to my next appointment has been stretched to 6-8 weeks which is a good indication that there is some improvement.

Family News

As previously mentioned I went away on holiday for a week and stayed at a work collegues place in Normandy in France. Thanks Bob. I took Sumika, my cousin Barbara and her 3 y.o. son Thomas and we had a brilliant week. Bob's place was the perfect base for exploring Normandy and we managed to cram a great deal in during the week, including visiting the Normandy beaches where the D. Day Landings took place, American cemetery at Omaha Beach (Saving Private Ryan and all that), Bayeux (home of the famous tapestry), Mount Saint Michel (absolutely beautiful place), The Memorial Museum at Caen (definitely recommended) and a 340 mile round trip to Paris.

Meanwhile, while Sumika and I were travelling around France, Naomi and Sean went to Japan for a couple of weeks. I didn't go as I wasn't sure how I'd cope with the 12 hour flight. After going to France I now feel a lot more confident regarding my stamina issues so may well go in November, finances permitting. Sean hadn't been to Japan for over 2 years and it was good for him to see his Grandma after all this time. It also gave Naomi the opportunity to catch up with her friends.

In this picture of Sean at a place called Enoshima, if you look carefully you can just make out the top of Mt Fuji in the background.

And that's about it for now.
Tata

Good job I get a copy of the G.P. letter

2009-02-02T09:40:00.002Z

Got the G.P. letter a couple of days ago and just as well seeing as it contained 2 things that weren't mentioned at the outpatients' appointment.
Firstly there was a request for the G.P. to commence me on Ezetimibe which is a Cholesterol inhibitor. My cholesterol is still high at 7.3.
Secondly a copy of the G.P. letter was sent to the Renal dietician in order for her to discuss a low phosphate diet. My phosphate level is currently 1.77 (I'm not sure what level it should be at). This will make my overall diet regime look nearly as complicated as my drug regime

No added salt
Low fat
Careful on the fluid intake
Low phosphate

At least it doesn't include a diebetic diet! Thanks for small mercies.
Still waiting to hear when I commence on the 5 week course of Iron infusions.

Had a good chat with a fellow F.S.G.S. sufferer over the weekend. His list of problems put my situation into perspective as he also suffers with Crohn's disease. There's always someone worse off than yourself

Finally, the U.K. ground to a halt today due to some fluffy stuff falling from the sky. With the recession hitting top speed and people going on strike left, right and centre because they feel we follow E.U. rules and no other bugger does, would the last person to stop working (probably my wife) please switch off the lights! Thanks

Iron Man (Not enthused about being Infused!)

2009-01-23T21:42:00.009Z

Had my latest appointment with the Consultant yesterday. This time it was with the Senior Consultant. Maybe my usual one has had enough of me! Anyway my numbers remain quite iffy. I'm still very anaemic (Hb level up slightly to 10) even though I'm now giving myself E.P.O. injections every Thursday. As a result of this I've now got to undergo a 5 week course of IntraVenous Iron infusions. Bit of a pain but at least it will mean getting off work early! It seems every time I go to an appointment I come away having to undergo further investigations or treatments. God knows how much I've cost the NHS so far.
Talking of which, I had my gastroscopy at the start of the week. It went well, discomfort was minimal, and no abnormalities were found. Good job it wasn't a psychological test!
Anyway back to yesterday's visit. My creatinine levels had gone back up to 193 (from 165 I think) and my Cyclosporine was up to 149, which caused the Consultant slight concern. Protein leakage was back to 5g and my GFR (Filtering rate of the kidneys) had dropped again to 34. All in all a right mixed bag of numbers. I was tempted to call "House!" at one stage as they were being fired at me. I'll wait for the G.P. letter to make sure I heard the figures right and amend the blog accordingly
I brought up one issue with the Consultant regarding the Cyclosporine. I am starting to have major problems with my gums. They are starting to grow over my teeth and I am starting to be aware of the impact this is having when I'm eating. Apparently the Amlodipine (blood pressure tablet) that I am taking also has this side effect, so the two of them in tandem can be a bit of a double whammy! The only time I've come across this condition before is with an anticonvulsant (anti epilepsy) drug called phenytoin. We discussed alternatives, the main one being a drug called Tacrolimus. (click on word for info) The side effects are not as severe as Cyclosporine but there is a risk of developing diabetes. When I heard that I immediately thought about Gold Blend without sugar! No thanks. We agreed to continue with the cyclosporine for the time being but I would get in touch with the Renal department if the the problems continued to increase.
Finally I asked if it was possible to form some sort of prognosis for my condition as the lack of knowlege about how it would most likely to progress was proving to be real pain and cause of major frustration. I was told that it would be very unlikely that I would go longer than 10 years without needing dialysis due to the instability and agressiveness that my FSGS seemed to be exhibiting. At last I have something to work on, but there is still a major element of "one day, sometime, never" that clouds the issue. I said that, in some ways it would be easier if I just went into Renal Failure now, as at least I'd have a clearer view of the road ahead. I'll just have to keep bumbling along until this whole process comes to some conclusion.

Other News

Seeing as it's been quite a while since my last blog entry there has been a number of things that have been going on. Prior to Christmas we all went to the Nene Valley Railway (near Peterborough) to see Thomas the Tank Engine and have a ride on the Santa Express. The weather was terrible but we had a great time.

Christmas was a bit different this year as I was working nights all through it (and New Year). We decided to break it up into 2, Presents on Christmas day, Christmas Dinner on Boxing Day (as my mum would be there that day and could keep an eye on the monsters whilst Naomi cooked the Dinner). It worked out well and a good Christmas was had by all. As you can see, Sumika particularly liked her Hannah Montana guitar and microphone (and wig).

And finally, we're all off on our travels next month. Naomi is taking Sean to Japan for 2 weeks to see his Grandma who he hasn't seen for over 2 years. I can't really cope with a 12 hour flight at present so I'm taking Sumika to Normandy in France for a week and staying at the home of a work colleague of mine who works in England for a couple of weeks and then returns to his place in France for a couple of weeks. My cousin and her 3 yo son are coming also so it will be great company for me and Sumi. I was originally going to go by ferry from Dover to Calais and drive across France as the the cost of the Ferry was only £94, however when I came to book it, it had shot up to £163. They must have suddenly realised that it was school holiday week. I'm going from Portsmouth to Caen now. It's £40 more but 3 hours less driving on the continent. I'm planning on visiting the Normandy beaches, Bayeux and St. Michel but gennerally just spend the time relaxing. I haven't had a break since the last time I went to Japan (November 2006). I don't count the Moscow trip last year as a break. Anyone reading my report of it will understand why!

That's about all for now but I'm sure I've forgotten loads of stuff but tough titty!
Will update again next month
By the way, Scouse Mike, I haven't forgotten that I owe you an email. I will get round to it at some stage.

All the best
Dave

Jabber The Gut!

2008-12-21T19:24:00.007Z

Typical isn't it. Waiting for a copy of a G.P. report is like waiting for a London bus, wait for ages and 2 almost come along together!
This has been the case this week as I had to chase up the previous one just a few days before my latest Renal appointment (18/12/2008), the report of which arrived yesterday (20/12).
Anyway it looks like the increase in Cyclosporine has had a positive effect and appears to have stbilised my Renal Function, Creatinine levels have dropped to 167, a decrease of about 40. The Cyclosporine level is 140 which apparently within the required range. Protein leakage remains at about 7 grams and eGFR is 41. Cholesterol remains steady at 7.7
Also on Thursday, I commenced my EPO injections. A simple little subcutaneous jab into the stomach (hence the title of this post) once a week. I got the Nurse Specialist to do it this time but I'll be doing my own injections from now on and the first one will be on Christmas Day! Typical!
So all in all things looked a little more positive this time but I'm not counting my chickens.
Finally, Merry Christmas to anyone reading this and I hope 2009 is a better year for all of us.
Here's a picture of the kids giving out the same message, but in Japanese

Life's a bitch, and then you Di-alyse

2008-12-15T21:05:00.003Z

I've finally got a copy of the latest letter to go to my GP just 3 days before my next appointment! Either they're swamped with work or just on the slow side. It has been quite aggravating as my last visit to the Consultant was probably the most information intensive so far. In fact there was so much discussed I lost my way regarding note taking and have been waiting on this letter to clarify and remember what was discussed.
To save reinventing the wheel, I'll just reproduce the salient parts of the report

Cyclosporine (the immunosuppresent that I was put on following the reduction in Steroid Therapy) being tolerated well but I remain very oedematous (significant fluid retention, especially around the ankles).
Blood levels
Cyclosporine 62 (below therapeutic regime), Creatinine 203 (Significant increase from last time, indication reduction in kidney function), eGFR 32 (Not good), Cholesterol 7.6 (very slight reduction but still too high), Haemoglobin 9.3 (Severely aenemic), Protein to Creatinine ratio 511 (Not sure what this indicates. Would appreciate some help on this one)

Reporting some tiredness and shortness of breath

Conclusions

1. Renal function. Creatinine level has risen further which may be due to several reasons:
a) FSGS is advanced with increased protein leakage which is impacting renal function
b) High levels of diuretic therapy affecting results
c) Recent introduction of Cyclosporine has had an impact on the glomeruli (the filtering part of the kidney) in the kidney
Due to the low levels of Cyclosporine it is unlikely that it has caused toxicity.

2. FSGS appears to be unremitting in nature which increases the possibility (now a probability I reckon) of reaching End stage Renal Failure in the future due to the continued heavy protein leakage
As a result of this several options were discussed
a) Stop Cyclosporine and allowing FSGS to progress its natural course
b) Continue Cyclosporine, aiming for therapeutic levels with close monitoring of Renal Function
c) Replacing Cyclosporine with an alternative drug like Mycophenolate (Some info about it here) which would have lesser haemodynamic effects on the kidney
I asked the Consultant (who informed me that she has read the blog. Good job I've been nice about her then!) about the possible use of Cyclophosphamide (which I had read about previously) but she informed me that there was little or no research info available about its usage in FSGS. She also pointed out that among the side effects was reduced Fertility. I actually liked the sound of that as it could then mean not having to have a vacectomy!
d) We decided to stick with the Cyclosporine and increase it to 150mg B.D. (means twice a day) (up from 125mg B.D.)

3. Due to low Haemoglobin levels, and my stool specimin showing no sign of internal blleeding (although I'm still having the Gastroscopy in January), I'm going to start on weekly injections of NeoRecormon 400 units. This drug is more commonly known as EPO and is one of the things that is tested for in Athletes, especially those doing stamina events as a higher level of red blood cells is advantageous due to the increases levels of oxygen that will be taken around by the blood. The specialist nurses will run through the procedure so that I can then administer the injections myself. What with all the other drugs I've been on (especially the high levels of steroids) and now this, that is definitely me screwed for the 2012 Olympics! LOL

I enquired about increasing my Furosemide (although this wasn't included in the report) due to the oedema and it was agreed to up it to 160mg B.D (from 120mg B.D.)

Next appointment 18th December, when I commence on my injections (Lucky Me!)

There's been quite a lot of other family stuff (e.g visit to the Nene Valley Railway to go on the Santa Express and Sumi's school pantomime) going on in the run up to Christmas but I'll write about that in a seperate blog entry when the photos have been processed.

Will write again soon.
Note to Mike (fellow FSGS sufferer). Sorry for not emailing you but things have been rather hectic and hopefully this blog entry will answer most of your questions. I will contact you but more likely to be after Christmas.
I really appreciate all the comments I receive, either privately, on here or on Facebook. Keep them coming, good or bad.

All the best
Dave

A Relaxing Weekend? What's one of those?

2008-11-17T18:50:00.010Z

Well it all started on Friday 14th November, Sumika's 9th birthday. The fact that it coincided with Children in Need Day meant that not only did she have a big badge saying "Birthday Girl" and she had persuaded me to fork out for bags of sweets to hand out to her school friends but she was also dressed in her pyjamas. All the kids and teachers (except the headmaster!) were in their nightwear and gave donations for the "privilege". Money was also raised through selling Pudsey cakes. Altogether the school raised nearly £450 which was a great effort.
I did a night shift Friday night and after waking up lunchtime Saturday it was full steam ahead to the town for Sumi's birthday party at a place called The Ceramic Life Cafe. There were 5 of Sumi's friends there plus Sean and the daughter of one of my work colleagues. My cousin Barbara brought along her young son Thomas also. All the children were exceptionally well behaved, even the little ones, although at times it didn't feel like a party as the kids were concentrating so hard on painting their ceramics there was hardly any sound! It certainly livened up when the food came out, especially the chocolate fountain. Sorry about the quality of the photo, but I was trying to maintain a gap to photograph the fountain when all the kids wanted to do was stuff themselves with the food! I'll change it when Naomi gets back the pictures she took.

A good time was had by all and we returned home early evening.

Next day, Sunday, up bright and early to go to Welwyn Garden City for Sumika's final dance competition of the year. It turned out to be a very successful morning with Sumika's dance School winning 5 out of the 8 trophies available. This added to the fact that all of the school's dancers won medals, Sumika won 1 gold and 2 bronze. I don't know yet how the afternoon went as we left at lunchtime.

To finish the weekend off I worked both Sunday and Monday night. I would be hoping to slow down somewhat but work itself is going to get a bit more intense, what with the place closing early next year and now Christmas is looming on the horizon!
Ah well, life goes on.

Down The slippery Slope

2008-11-12T11:57:00.003Z

Following my poor set of results last time, I had my fingers crossed that today's outpatients' appointment would be a lot more positive following the commencement of the Cyclosporin and reduction of prednisolone. In truth it turned out to be a mixed bag.
In the plus column the Protein leakage had shown a marked improvement, dropping from over 12 to around the 5 mark.
However on the minus side my Creatinine levels had increased to 159 (from 124), my Glomeruler Filtration Rate had reduced to 44 (from 61), Cholesterol remained at a high level of 7.7 and my Hb (Haemoglobin) levels had fallen a bit further to 9.5 (from 9.9). All in all not a brilliant set of scores. Bit like Man Utd recently, loads of effort but coming up short.
As a result of this number crunching I've now got to undergo additional tests. This includes sending off a stool (not one that you get from IKEA!) specimen and be referred for a Gastroscopy (camera down the throat) to check for signs of bleeding which might be leading to the low Hb. I requested that this be done after Christmas if possible due to me being really busy at present, both at work and home, right up to the New Year. We'll have to see what happens. I joked with my "fantastic" Consultant (who has told me she'll definitely be reading this today) that after every appointment I come away with even more forms, 5 this time, 3 for blood, 1 for wee and 1 for poo!
At this point I'll pass on a joke that was sent to me a while ago

A little boy goes up to his dad and says "Daddy, where does Poo come from?"
His father replies "Well son, food passes down the a tube called the Oesophagus into the Stomach where digestive enzymes induce a probiotic reaction in the Alimentary Canal to extract Protein before waste products descend via the Colon and Rectum to emerge as Poo!"
"Wow" says the little boy, "and what about Tigger?"
:-)

I know this is a bit late but a little mention about Halloween. I have a "Bah Humbug" attitude to Trick or Treat. It is an American concept that is community based and all the better for it, unfortunately in England it's just another form of begging, like Carol Singing, and carries significant risks in my opinion. You see unsupervised young children knocking on strangers' doors and basically begging for sweets and potentially causing a problem if they don't get what they want. This concerns me in 2 ways both for the risk the children may be putting themselves at or the fear and worry that can be caused to certain people when they have what can almost be called threats made to them if they don't come up with the goodies.
I don't let the kids get involved in the Trick or Treat side of things and we had a Halloween Party instead which they really enjoyed (contrary to how Sean looks in the photo).

It's a busy time this weekend. Sumika celebrates her 9th birthday on Friday and will be having a party on Saturday at a place called The Ceramic Life Cafe where the children can design their own cup or plate and the Birthday child gets a personalised ceramic plate signed by all the invited children. Should be fun, in a chaotic sort of way. On Sunday we travel to Welwyn Garden City for Sumika's final Highland Dance Competition of the year. Fingers crossed that she can finish the weekend on a high.

That's all for now. Will probably update next week

Sometimes It's Better To Be Wrong.

2008-10-24T21:44:00.007+01:00

Well I had my latest appointment with my favourite Consultant (Have to say that as she might be reading this, after I mentioned that I was writing a blog and she wanted to know the web address) and unfortunately my blood and urine results were very poor, as I suspected they were going to be. My Protein leakage levels had gone up from 3.8 to 12 resulting in a reduction of my blood/albumin levels of 28 down to 22. The other figures I'll have to wait on until I get the G.P. letter, although I did see that my Creatinine was now 124 (a slight increase on my previous result but not a cause for concern, yet). It was also noted that I was slightly anaemic but that could be due to a dilution of the blood caused by the fluid retention.
There was no obvious reason why things have gone downhill after ticking along nicely for the first few months, so it was put down to "just one of those things". Generally I love roller coasters, but this is one ride I could well do without! I'll just have to keep smiling but the novelty of all this is starting to wear a bit thin (like my skin, somewhat).
Because I've been on a high dosage of Prednisolone for so long, it was time to look at reducing it so a regime has been written up where it reduces from 100mg (alternate days (ad)) to 80mg ad for one week, then to 60mg ad for one week, then 40mg ad for one week and then finally staying on a maintenance dose of 30mg ad from then on.
Tomorrow I commence on Cyclosporin 125mg twice a day. Cyclosporin is an immunosuppresent which is commonly used post transplant to prevent the body rejecting the aquired organ. In my case it's prescribed to stop the body's immune system from attacking the kidney which appears to be what has happened to cause the FSGS (Nephrotic Syndrome). Here's a link from one of my favourite websites that explains in plain English all about the drug. I've just opened the box in which my tablets are contained and there isn't what you would call an information leaflet, more a booklet, the size of which is similar to the instruction manual for my mobile phone! That can be some "light reading" for me later.
In the initial weeks of taking the Cyclosporin I need to be monitored quite closely to get my levels right (similar system to someone being prescribed Lithium) and ensure that they don't reach toxic proportions. Unfortunately the specific tests that are required for the blood sample need to be done in either Addenbrookes (Cambridge) or Whitechapel (London) as Colchester doesn't have the facilities for that particular test. This can result in some delays, so fingers crossed that things go without a hitch. However, knowing how my year has gone I'm none too confident, but what the hell, it's another new experience, and it gives me plenty more to talk/write about. I have to have my first test in a couple of weeks and we'll see where we go from there. There are a few specifics about when to have the blood test and what needs to be recorded but the Consultant has written it all down in a clear and concise way that is easy to follow, which is another reason why I wanted to be seen by just her (where possible). On that subject, I raised the issue at the appointment and it doesn't look like it will present much, if any, of a problem to achieve which is a great relief to me. As well as that, she supported my decision to take the Metolazone even though I'd been advised to stop it and has said that I should carry on "self medicating" which is also a boost to my self esteem. All in all it was a very productive appointment even though it was based on a crap set of blood and urine results.
I'll probably do a small update when I get a copy of the G.P. letter, sometime next week, for those of you that are interested.

And Finally
I've heard that some people have wished to post comments (which is always appreciated) but have been unable to do so. This could be that they have not been registered with the website, which it appears you need to be to carry out that particular activity, although I've set things up so that doesn't have to be the case. Here's a link that deals with this issue. The other way is to email me on

sumisdad@hotmail.com

Whichever approach people choose, I welcome all comments, positive or negative, as long as they're polite and/or constructive, which definitely applies to those that I've received thus far.

Bye for now

Before and After

2008-10-16T19:48:00.006+01:00

I came across a photo of me taken a couple of years ago. The difference between what I looked like then and what I looked like now is quite dramatic. It gives a good indication of what the combined effects of Nephrotic Syndrome and large doses of steroids can do to someone's features.
Today I got one of the staff at work to take a picture of me so that the contrast can be seen.

Here's the one taken when I used to be handsome (haha!)

And now ladies and gentlemen my impression of "The Elephant Man!"

I know Naomi's Japanese, but I bet even she didn't expect to be married to someone who might be mistaken for a Sumo Wrestler!

Ah well. Anyway, things are not looking too promising at the moment. My fluid retention appears to have come back with a vengeance and my ankles are particularly swollen, even though I've been taking Metolazone occasionally. I've got to do my 24 hour urine collection next week, have my blood tests and see the Consultant on Friday. I may then get a better picture of what appears to be going wrong at the moment. I'll update as soon as I know.
By the way Rob, thanks for all your comments. They really are appreciated even though I don't reply to every one.

Blood Pressure, Being Bloated, Breakdown, Bullion and Breadsticks!

2008-09-30T09:34:00.014+01:00

Where to start?
As I mentioned in the previous post, things went downhill somewhat after my outpatients appointment. The fluid retention increased, as did my blood pressure and even though I started taking the Metolazone again I'm still way over 90kgs compared to the 88-90 kg weight I was managing to keep at beforehand. I don't hold the Consultant solely responsible for this as my blood and urine tests showed a reduction in kidney function anyway. After a couple of phone calls I finally got a copy of the the G.P. letter. Apparently it hadn't been requested to be sent to me even though I'd asked. Ah well, just put it on the list of niggles. The reason officially given for stopping the Metolazone was "intra vascular volume depletion due to over diuresis". This seemed to be based on the fact that I'd stated that I felt dizzy when taking it, which wasn't entirely accurate. I actually said I didn't feel well when I took it but appreciated the job it was doing and was being careful not to overdo it. Anyway I'm taking it again, regardless of what's been said but my weight is currently 94kg and the oedema is particularly bad around my ankles and stomach. I've managed to get my Blood Pressure down but it's still slightly higher than I would like.
A couple of weeks ago I was having a bad time mentally and was getting more and more frustrated with my inability to do anything without dropping, knocking over or breaking something. This mixed with a deterioration in my tolerance levels resulted in me having a "10 minute mental breakdown" when I basically just gave up! It actually did me some good as I've felt a lot calmer since but I don't recommend it.
I think part of the problem is an unwillingness on my part to properly accept how potentially ill I am and the frustration I get from my body, -
a) looking bloody awful
and
b) not doing what I expect it to do.
I'm a stubborn so and so at the best of times and a bit of a "control freak" regarding my own path in life (as opposed to wanting to control everybody else) which can be a damaging cocktail. This time that's just proved to be the case. It's just something I have to come to terms with, but I'm determined that it won't control my life completely. There's more important things in life like planning to go the Utd v Aalborg match in December!
On a cheerier note I've had some good luck also. For the past 4 years I've been taking part in a Fantasy Golf League, based on the American PGA Tour. There are 24 of us in the league and it's on a pay to play basis. Going into the last tournament of the season I was in 3rd place but results went my way and I ended up actually winning the thing, the first non-American to do so! I've won a specially minted (1/2 ounce I think) solid gold American Dollar, which should arrive in the next few weeks. Given the way gold is going up in value at the moment it should be worth quite a bit but I don't really want to sell it. Just have to see how things go. I'll post a picture of it when it arrives.
My breadmaking skills continue to improve, although I still have the occasional disaster such as another attempt to make a Panettone which turned out looking more like a large rock cake! Recent successes though have been my Italian Breadsticks and Wholemeal Muffins. Because they're home-made I can control the amount of salt that they contain. Some salt is needed to help with the required chemical reactions with the yeast. If anybody wants the recipe then just send me an email to sumisdad@hotmail.com or leave a comment. Anyway here's a couple of pictures to show off my latest culinary skills.

I finally had my appointment with the Renal Dietician this week. She was not impressed that it was 5 months after diagnosis, neither was I, especially as I informed her of the cock-ups that had been made resulting in me initially being referred to a General Dietician. But that was one of the many problems I encountered when I was discharged from hospital. We had a good chat and she informed me that I didn't need to go careful regarding foods high in potassium, in fact I should be eating more of them because my potassium levels are slightly low. Because I've had experience of looking after people who have had kidney issues and great care was required regarding the amount of high potassium foods they ate that has clouded my view to my dietary needs somewhat.
Generally she was quite impressed with how I'd been getting on with managing my own diet and gave me a few pointers to aid me in the future. She gave me a small pamphlet regarding salt intake and in it there was one very handy piece of info to help gauge levels. On some packaging it states the amount of salt or sodium per 100g which makes it difficult to judge how much salt is in the food, however the pamphlet states that

A Lot is
1.25mg of salt or more
0.5mg of sodium or more

A Little is
0.25mg of salt
0.1mg of sodium

This should help greatly in the future.

She also suggested that I make a couple of additions to my upcoming blood and urine tests ask for additional checks to be made regarding Triglyceride and Urine Sodium levels. Hopefully I'll receive a letter soon covering all the things we discussed and an appointment for 3 months time.

I'm finally back working full-time and have even started doing some overtime. Fitness hasn't come into it thus far which is a relief as we really need the money due to my enforced absences. and with various expenses coming up like Sumika's birthday, Sean's trip on the Santa Express and meeting Thomas the Tank Engine, and me finally going to Old Trafford this season in December! Anyway, so far so good.

Finally I haven't posted a picture of Sean recently so here's one I took when we went to a local car boot sale.

Will write again after my next appointment on the 24th October

Cya.

If it ain't broke, Don't fix it!

2008-09-24T07:01:00.003+01:00

I decided to go against Doctor's advice this morning.
As I mentioned in my previous post, I had reservations about completely stopping the Metolazone even though it does make me feel a bit rough when I take it. I was willing to put up with those issues due to the fact that at least my weight, fluid retention and blood pressure was remaining stable.
It's unfortunate that my blood and urine results came back iffy and were being dealt with by the 3rd Consultant, although his idea for me to have a 24hr urine collection was one I strongly agreed with.
I'll say from the outset, he's a really decent bloke who I like a great deal, but I would rather deal with the other Consultants especially the 2nd one who I saw first after my referal. She's the one who put me on the Quinine and adjusted my Steroids to every other day. Both ideas have worked well. Having said that, the Senior Consultant, who put me on the Aliskiren for my blood pressure has done a very good job too, although he can lack the holistic approach of Consultant number 2. The fact that I'm writing a post about 3 Consultants points to a problem that I've mentioned before. I may well ask at my next appointment if there is any way that I can stick with one as much as possible.
Anyway since stopping the Metolazone my weight and B.P. readings have shown a marked downturn and have pretty well gone out of kilter, as well as clear evidence of fluid retention around my ankles evidenced by some major oedema re-appearing.
Prior to my appointment I was managing to keep my weight between 88-90 kg however here's the figures since the 17th Sept
Date Weight (Kg)

17/09/2008	89.80
18/09/2008	91.50
19/09/2008	91.50
20/09/2008	91.50
21/09/2008	92.40
22/09/2008	93.00
23/09/2008	93.50
24/09/2008	95.40

This morning's reading was the last straw. In "English Money" that represents a rise of nearly a stone in a week! I'm sorry Mr. Consultant but I can't agree with you that it is all down to the steroids, although I accept the slight decrease in kidney function must be playing a part, but primarily to the fluid retention and B.P. I reckon.

My blood pressure has deteriorated a bit as well
Date Time Systolic Diastolic

17/09/2008	6.30	127	78
17/09/2008	22.30	131	66
18/09/2008	7.45	134	84
18/09/2008	23.00	111	63
19/09/2008	6.30	130	76
20/09/2008	8.00	125	77
20/09/2008	23.45	118	67
21/09/2008	8.15	130	76
21/09/2008	23.45	133	71
22/09/2008	7.15	140	82
22/09/2008	22.15	120	69
23/09/2008	9.30	135	82
23/09/2008	22.45	135	73
24/09/2008	7.00	140	85

The other thing that was slightly annoying at the appointment was the fact that he took my BP with me laying down to challenge my figures although I always do mine in a sitting position.
Well the upshot of all this is that I took 2.5mg of Metolazone this morning and will stand or fall by my decision. I'll inform the Renal dept in the next few days when the picture becomes clearer. I haven't yet received a copy of the G.P. report and will chase them up for that if it hasn't come by next week. Watch this space.

One good thing that's occurred this week is I've finally made a perfect (well nearly perfect) loaf of bread, a farmhouse loaf with sun dried tomatoes, mixed herbs and garlic. It was a bit soft in the middle (I'll use strong white flour next time instead of plain), but at least it didn't sink!

Until next time, good luck to anyone reading and please send me your comments. I really appreciate it even if it is constructive criticism.

What a day!

2008-09-18T23:33:00.011+01:00

It's currently 11.30pm and I'm bloody knackered!
The day started with me finishing my first night shift in nearly 6 months, getting 3 hours sleep before having my Nephrology appointment, going shopping and then attempting to cook something I've never done before, picking Sumi up from school and then doing a shuttle/chauffeur service between her dance class and Sean's Kindergarten before collecting Naomi from the station, cooking a birthday dinner to celebrate her 40th (she's reached it at last!), clearing everything away after wards and then sitting down to do this! Right lets try to work through that lot a little slower.

Night Shift - Got the nod that I could do it and apart from making slight adjustments to when to take my meds I flew through it without problems. It was basically a quiet night but there were a couple of things to test my stamina, but that held up perfectly. Good signs for the future when I can start doing some overtime in a couple of weeks.

Consultant Appointment - I saw the 3rd Consultant from the Renal department. I get on with all 3 but I do find it slightly aggrevating that they run this rotation system which means it keeps changing who I see from one appointment to the next. This does bring up consistency issues that I could do without. Although they're singing from the same hymn book you can still notice subtle changes in their approach and as the patient you feel that certain things need to keep being renegotiated. If that is a pain for someone like me who actually is working within the NHS and has a pretty good understanding for how these "work" then it's difficult to imagine how intimidating that might be for someone else who hasn't a clue. The old adage of "Too many cooks......" springs to mind. Anyway, on to the reults, which were a mixed bag to say the least.

Good points - Cholesterol still coming down. Now 5.8 (from 6.1) Fasting Blood Glucose came back with a reading off 4.4 which is well within the desired range of 3 to 6. Brilliant. There is no way I was going to accept being a diabetic and having to drink my Gold Blend coffee without my 2 sugars. I reckon the big fella in the sky took sympathy on me. He'd have had a battle on his hands if he hadn't. I'm not religious by the way, but it's handy to have someone to blame, real or imaginary!

Not so good points - It seems that there is a slight deterioration in my kidney function since my last appointment. My Creatinine levels have increased to 120 (from 111) and my Albumin level has dropped back to 28 (from 32). Apparently my protein leakage has gone up slightly (I didn't get the actual score for that one because he was chucking so many figures at me in such a short period of time. I'll have to wait until I get the copy of the GP letter) This has resulted in an eGFR (estimated Glomerular Filtration Rate) of 64 (down from 71), which means a dterioration in kidney function. That's obviously a bit of a set back, added to the fact that my weight has been going a bit out of kilter in the last 7-10 days and is now over 90kg (nearly 14 1/2 stone, damn!). The Consultant put this totally down to the seroids, not fluid retention and beleived that I was still suffering a certain level of dehydration within the body tissues. I'd like an explanation as to why then my stomach is as large and jelly like as it is if it's not fluid that's responsible. Have to try and get ansewers for that at the next appointment. Well the upshot of that that was to keep on the same Furosemide regime but stop the Metolazone altogether. Not something I'm particularly upset about because it does make me feel quite ill (even on such a small dose), although I have reservations as I think the fluid retention could well come back with a vengeance. Hope I'm wrong but we'll wait and see. If I does, I ain't waiting till the next appointment to see if I can start taking it again. Lastly it was felt that I need to do a 24 hr urine collection, which to be perfectly honest, I'm surprised I haven't had to do one before, especially as the Consultant said that certain results I've been getting have been slightly inconclusive/ambiguous that only a 24 Hr. check will give much clearer results. I did laugh when the Nurse only bought me one container. After pointing out the amount of diuretics I'm on we increased it to 3, just to be on the safe side! Next appointment is 24th October.

Naomi's 4oth! (At last, Pay back time!) - For the last 5 years Naomi has been trying to wind me up over the fact that she is married to some sort of old codger in his 40's while she has sbeen a spring chicken in her 30's. Well today the worm turned as she finally hit the big Four Zero. Sumika and I had already ensured that she would wear her "I am 40 Today" badge at work and there would be a strong possibilty that i would phone her work mates to check that she was carrying out her "punishment". To be fair to her she got someone at work to take a picture on her mobile showing her wearing said badge at work so she kept to her side of the bargain. I don't think she was overly impressed and has already said that next year she's regressing back to 39!
When I turned 40 we had a long weekend in Spain near Barcelona and had a fantastic time, unfortunately, due to my illness having such a major impact on Finances and Fitness something similar like a trip to Paris or Prague has been a no no for Naomi's. As a result I wanted to do something special for her and decided to make a Mocha Panettone (Panettone being one of Naomi's favourite foods) using my new (donated) breadmaker and new (donated) Bread and Breadmaker Book. Basically everything went well until the adding of the butter. At the time I thought the amount seemed somewhat large, which proved to be the case when the Breadmaker finished its dough (or should that be "Doh!"?) cycle and i had quite a gooey/stickey mess. I rectified it somewhat by adding copious amounts of plain flour which meant that instead of ending up with a tall elegant and light panettone I had what would be better described as a fairly squat chocolatey sponge! It tasted alright though.

The rest of the Birthday dinner was nice and the General Consensus was that I'd done a pretty good job, for which I was happy to hear because it had been a bloody long day!
Here's some more pics

1) Sumi and Sean at the Birthday Table

2) Naomi wielding a knife, which she threatened me with if i didn't stop taking the Mickey!

3) Naomi finally admitting she's getting on a bit! (She'll have a go at me with that knife again if she reads this!)

I think that's about it. Congrats, to anyone who's managed to get this far. There's nothing wrong with your stamina levels. I'll update in a couple of weeks unless the GP letter has additional info or something dramatic occurs beforehand.
It's now 1am and I'm going to bed!
Bye for now.

Mixed week

2008-09-14T08:47:00.006+01:00

I finally had a go with my new breadmaker and was pretty pleased with the result. I found this recipe for a loaf similar to Tuscan Bread, added a few things like mixed herbs and sun-dried tomatoes and ended up with this

I was pretty pleased with the result although it didn't rise enough and could have had a bit more flavour. I made another one yesterday, increasing the amount of herbs, water etc, adding garlic, and the result was much better. Thanks to Sandy.
Although the recipe says about adding salt, this is to help with the rising process and is a fairly insignificant amount given the amount of bread made. It's certainly a lot less than the shop bought stuff.

Work wise, it has been very busy and I've been on the go solidly, which is no bad thing, and managed to get through with flying colours, although a waste basket took a battering when I managed to go through a 30 second spell of knocking as many things over as I could. As my frustration grew, I took it out on the unfortunate wicker item, which was full of rubbish at the time. My penance was then to clear up all the additional mess that I'd made. The level of clumsiness (is that a word?) I've been exhibiting in recent weeks has gradually been increasing, including knocking things over, dropping stuff, bumping into things, getting distracted easily. I'm putting it down to the steroids and as a result can't wait to start being weaned off them in October, as my frustration is definitely on the increase also.

My weight has been slightly problematic this week for some reason. On Friday it had gone up to 90.5Kg from 88.7kg the day before (a rise of about 4lb in 24 hours). Don't know why as I'm not eating any more than usual, but I did notice that I'm getting oedema easier on my legs and my stomach ascietes (swelling due to fluid retention) appear to be increasing. Taking Metolazone the last 2 days has had limited success and I was still 89.7Kg this morning (Sunday). Whether this is down to a deterioration in my FSGS I'll find out next week as I see the consultant on Thursday. I'll find out if there's any indication of diabetes too. A fair bit to concentrate my mind in the days ahead!

Just to finish off the week, Utd got beat by Liverpool!
Everything pointed to a Utd victory, Liverpool in disaray, Keane a £20 million misfit, Torres and Gerrard injured, Utd with new signing Berbatov, 1-0 up (Tevez) in the first few minutes and then Edwin did a Barthez. Whatever he was attempting to do didn't come off, just resulting in an own-goal by Wesley and suddenly Utd forgot how to play, Liverpool grew in confidence and the "bad at the office" was completed by substitute Babbel.
I appreciated the fact that my Liverpool born/supporting mate Phil who came with his kids to watch the match didn't rub it in. It was good to see you all mate.

Will update again after next Thursday's Nephrology appointment.

When is a "good deal" not a "good deal"?

2008-09-09T15:38:00.004+01:00

Tescos have been doing what appears to be a reasonable special offer 3 X 1L of their own brand chilled Tropical Fruit Juice (which I really like) for £2.15. However you can actually get 2 X 2L of the same juice for £2.10, i.e. 1L more for 5p less! Sometimes all this label checking I do pays dividends. This has been like this for a month now so I'll have to see if they're still doing it.

I read recently about what percentage of healthy foods the large supermarkets include in the special offers and apparently it has decreased in recent years although they deny it. Believe me, there aren't many and those that are aren't really that special because they invaribly increase the price a couple of months before their fantastic "reduction". It's all a con.

Also check the salt content of sandwiches in Boots, supposedly the type of shop that should promote healthy eating. You'll get a surprise.

Finally I met up with someone I hadn't seen for 20 years today. If you're reading this Theresa, thanks for a really pleasant morning to both you and Sharon. Went to Starbucks and they were selling this panini with salt content of 3G. That is 50% of the daily reccomended dose in what can best be considered a flashy sandwich!
Oh well, looks like renal units will get even busier in the years ahead.

Next appointment with the Nephrologist is next week (Thursday). Blood test on Tuesday. Hope the fasting glucose test doesn't say I've developed diabetes, because I am not having Gold Blend without my 2 sugars! Will post again sometime after the visit.

Another Year Older, Time to Reflect

2008-09-04T09:10:00.004+01:00

45 today and it's hard to comprehend what's happened since I turned 44. A definite mix of positives and negatives for the whole family.

These have ranged from seeing how Sumika has progressed with her dancing and education (both English and Japanese), Naomi got the chance to represent Japan Airlines at an event back in Tokyo, Sean growing up (although the way he is sometimes that can seem more of a negative!), and starting at Kindergarten. This time next year he'll be starting school. Me seeing United winning the CL Trophy in Moscow, plus the wins over Arsenal (4-0 FA Cup, could have been 8!) and Barcelona (CL semi. Best atmosphere I've experienced at Old Trafford)

As for the negatives, well they speak for themselves. The impact my health issues have had have been enormous, ranging from financial due to the amount of overtime I've missed out on to limits I'm currently putting on myself regarding travelling in the next few months. This added to the unsure future at work makes the forthcoming year just as potentially interesting as the one that's just passed.

Who knows what the future holds. To coin a phrase "This time next year we maybe millionaires" (or homeless!)

When I get a bit more time I may add some more to this as I've just written it "off the cuff" so to speak as I'm sure I've forgot some stuff.

Another successful comp

2008-08-26T00:12:00.004+01:00

On Sunday 24th August we travelled to St. Neots in Cambridgeshire for one of Sumi's Highland Dance Competitions.
After a slow start in the Highland Fling she came back strongly and managed to win 3 medals, Gold for the Sword dance and Silvers for the Lilt and Flora.

It proved to be very successful day for her School of Dancing as all but one managed to win medals with a couple getting trophies as well. The one dancer who came home empty handed was injured and dancing at the top level so the chances of success were slim anyway.
Thanks to mum for looking after Sean. Hopefully in the next few months he'll be able to come to the indoor comps as opposed to just the outside ones. See if he settles down first!

The day didn't prove too tiring although I did get muscle cramps in my hands later that afternoon, the first ones since I commenced on the Quinine. A combination of washing them with soap in warm water, adopting the "praying stance" and then applying an ice pack stopped it from becoming an all out attack but there was still a fair amount of pain though. I did notice it occurred about an hour after taking Furosemide which Mike from Liverpool had pointed out was what he thought contributed to the cramps. It's something I'll keep a check on, but I've not had any problems today.

Swings and Roundabouts

2008-08-23T20:22:00.007+01:00

Well, it's been just over 4 weeks since the last update and the roller-coaster ride has continued. As mentioned in the last post I was having problems with severe cramps in my hands, and to a lesser extent, in my feet. The pain was excruciating and completely debilitating. It would last for up to 20 minutes and I was in no position to do anything. The slightest thing would start to bring the cramps on. For example, one Sunday afternoon I was carving the Roast and the pressure exerted on my hands bought on an "attack" that was so painful I was virtually in tears and shouting at myself in anger through the frustration of feeling powerless to do anything about it. This in turn provided scary images for the kids, seeing their dad in so much pain and unable to cope. A thoroughly unsatisfactory situation as you can imagine.
I was getting these severe attacks on an almost a daily basis and apart from Sumi rushing to the freezer to get me an ice pack to help numb the pain there was little I could do. I did a bit of research on the internet and found a couple of recommendations including washing with soap and hot water as this (supposedly) relaxes the muscles. In fact it did actually help, especially if I did it when I felt an attack coming on. I combined this washing of hands routine with what can be best described as going into some sort praying position. This involved putting my hands together (like a child does when they pray) and then interlinking the fingers so they remained separated and unable to go into spasm and start contracting and stiffening. Not being a religious person the irony of this technique was certainly not lost on me!
Because there was a build up to an "attack", I could carry out these techniques as soon as I felt the first twinge. Although reasonably successful in preventing the situation really deteriorating I found myself somewhat living on the edge waiting for the next cramping episode to come along. The stress of this and the thought that whenever I was doing something that applied increased pressure on my hands and fingers (e.g. applying Sean's eczema creams) was starting to get me down. I bought some various tablets including Cranberry, Cod Liver Oil and Multivitamins (including Calcium) to cover any deficiencies that may have been caused by my condition and/or the medication that I was already on. None of them were contra-indicated to my medication and the Consultant (at my most recent appointment) said they were OK.
I returned to work after having a further meeting with the Occupational Health Dr. It was agreed I would return initially on reduced amount of work days with view to again gradually building up to full time, and then look at when I could commence overtime and night work. Although desperate to start earning extra money to make up for recent losses I wasn't going to be stupid and try and bluff my way through some sort of short cut. I've already had too many false starts and set backs. As it is, I've actually extended my rehab time due to medication changes at my last Renal appointment (more of that later).
Returning to work did not go as smoothly as I hoped and I was having quite a lot of problems stamina wise. I'd be ok for about 3 hours and then "hit the wall", requiring me to take it easy for about 1-2 hours before getting my second breath to take me to the end of the shift. Later on that week I attended a course at the recently constructed Primary Care Centre (where the Renal Unit is also based). The day was hot, more people attended than were expected, the place didn't have air conditioning and I wasn't feeling 100% anyway. Needless to say I didn't mange to last the whole day, although I only left an hour early. Even others on the course were complaining about the heat and poor ventilation so I basically had no chance. I've still got to write up my evaluation, but it will recommend that the place not be used for courses if it can't even provide a basic level of comfort. Not bad for multi million pound, supposedly state of the art, Centre!
As soon as I got home I crashed out on the sofa and slept for the next 2 hours and felt considerably better as a result.

Latest Renal Appointment

Saw the Consultant Nephrologist this week, which wasn't without its problems. All my previous appointments had been at the Renal Unit, so I happily made my way to the department and sat and waited. They have a system where you don't actually nee to let them know that you're there, just wait and you'll be automatically called. This is all well and good but trust me to find a way of showing up a flaw in the system. I was used to going into my appointments after the designated time but when it got to 15 minutes late and I'd still not seen a single member of the Renal team walking around I became concerned. To cut a long story short I managed to find someone who informed me that the appointment was in the OutPatients Dept in the General Hospital just up the road! Bloody typical. One day my life may run just a tad smoother, but I'm not counting on it. To make matters worse I've actually managed to lose my diary around that time, probably due to rushing between venues! Anyway enough of the whinging, back to how the appointment went (which they still let me attend, albeit an hour late).

I was obviously interested to find out my blood and urine results, but for me the most important thing was to try and come up with some resolution to the cramps and stamina problems. Regarding the stamina issues the Consultant suggested a "double then omit" approach with my steroids, meaning that instead of 50mg per day, take 100mg one day then nothing the next. She said that this had proved successful with some patients who were experiencing similar difficulties. For the Cramps/Contractures /Spasms she prescribed Quinine Sulphate 300mg once a day. I've been on it 3 days now and so far, so good. Too early to be having major celebrations though. Watch this space.

My blood and urine results were a list of positives with one cautionary note

Urine - Protein Leakage reduced to 3.5g/24 hr from a peak of over 9g/24hr. Was 4.65 previously

Blood - Haemoglobin 10.8, White Cell Count 24.6, Creatinine 111, Albumin 32 (up from 22) and Cholesterol down to 6.1 from the initial high of 15.3!
This added to the fact that my blood pressure was averaging out at 131/77 (morning) and 118/68 (night), my fluid retention and weight were being closely monitored and successfully controlled by myself it was generally good news all the way. However the one warning sign was that my blood/glucose levels were higher than they should be. Steroids can induce diabetes and my next blood test will include a fasting glucose to check that isn't happening to me. As I said to the Consultant if I get to the point that I've got diabetes on top of everything else she might as well shoot me because I can't cope with coffee without sugar. NO WAY, JOSE!!!!!!!!!!!!!!
Fingers crossed that won't be the case.

Other News

Last week the family went to a BBQ being held at the home where my sister lives. Carolyn has Learning Disabilities and is a primary reason/motivation for me becoming a Learning Disability Nurse over 20 years ago. She lives in a beautiful bungalow with 2 other people being provided with 24care and support in a "Social Care" environment. The staff do a fantastic job and have helped create alovely atmosphere within the home and have done so much work, especially where the garden is concerned that their efforts were recognised with a cash reward. Typical of them, their attitude was to hold a BBQ for all the friends and families of the 3 people in the bungalow.
Our family is a little spread out so don't get together that often so it was great having both my brothers and their wives there that day, as well as mum. Sumika nd Sean made up the entourage. The only ones missing were my 2 nephews, niece and their families. At least we managed to get a nice photo of the immediate family.

Tomorrow we're off to St Neots in Cambridgeshire for Sumi's latest dance comp. Hopefully she can carry on from where she left off in Ashbourne. Will update the blog accordingly.

The financial strain of being off sick has resulted in me making a heartbreaking decision. I'm going to have to miss United's first European Home game of the season as I can't justify the expense! Life can be very cruel.

Many thanks to Sandy and Andy for the donation of the breadmaker. I haven't tried it yet but I'm determined not to blow this one up like I did with the previous one.

Finally, many thanks to Evertonian Mike for his kind words and support. It really is appreciated and quite humbling when people you've never known like Mike and Heidi take the time to let you know that you're not on your own and give you a chance to hopefully exchange ideas about something that there is quite limited information available. Cheers chaps!

Till the next post, congrats if you managed to read all of this one

Dry Dock

2008-07-23T18:49:00.005+01:00

It's been a while since my last post and quite a bit has happened in that time, most of it not good.

Well unfortunately the new diuretic regime continued to work a lot more successfully than was probably expected. In 9 days I lost in excess of 10kg (About 1 1/2 Stone) and ended up quite dehydrated. I had virtually no energy and was shambling around the house like an old man.
I had returned to work for a couple of days but it was a real struggle.
The weekend of 19, 20 and 21 July we had planned to go to Derbyshire as Sumi had a dance comp in Ashbourne and it was going to be the first time she had competed at Novice level. In hindsight I should have cancelled because I was quite ill throughout the weekend, especially on the Saturday when we went to Matlock for the day to visit "The Heights of Abraham" There was quite a lot of walking involved and for every 5 minutes of effort I put in I needed 10 to recover. It was bloody hard work!
Still, I didn't want to let Sumi down and on the day of the comp. she excelled, managing to win a Gold in the Fling and a Bronze in the Sword Dance. What made this particularly impressive was not only was she competing at Novice for the first time but there was only one group and it was under 16s. When she was on stage she was dancing next to 2 girls who were nearly twice her age. We were very proud of her.
The guest of honour at the "Ashbourne Highland Gathering" was Geoff Capes, former Olympic Shot Putter, World's Strongest Man and renowned Budgerigar breeder!
We managed to get a photo taken of Sumi with Geoff which was a nice finish to the morning.

The 4 hour drive home after the competition just added to the tiredness that I had experienced all weekend. I was also quite stressed as Sean and Sumika had given quite graphic displays of what Sibling Rivalry is all about throughout the time we were away. As you can imagine, by the time we got home I was fit to drop and nothing else.

I had spoken to the Nephrologist the previous week who had advised to discontinue the diuretics for a few days (which I had pre-empted anyway), but it was going to take a while to get the balance right. By Monday I hadn't taken any diuretics for 4 days but I was still in a bad way so decided to visit Occupational Health Dept. The nurse could see I was in a bad way and advised me to go to the GP and have more time of work in order to get myself straightened out, as it were. She also made an appointment for a follow-up with the Occ. Health Doctor (29th July, 3pm).
I went to the GP on the 22nd and was certificated for a further 2 weeks so hopefully by then I would be right as rain.

As the week progressed I started to regain my strength and was adjusting my diuretics on a daily basis, based on weight, evidence of fluid retention and gut feeling. This is how I will continue because it seems to be going quite well and I'm feeling much better.
One problem that I'm still encountering is my hands cramping up and going into spasm. I seem to be getting an "attack" at least once a day and the pain is getting much more severe and prolonged. It is lasting up to 20 minutes on occasions and I need to discover what is directly causing it and take the appropriate action. Maybe it's related to the steroids as I seem to have a permanent tremour in my hands which I know can be a side effect.

Just recently had a very supportive comment from a lady in America called Heidi who was diagnosed with FSGS a couple of years ago. She has a her own blog which she started when diagnosed for the same reasons I started mine. It's great that one of my initial reasons for starting this blog appears to have been successful and contact from people like Heidi can be nothing but a good thing. I will watch her progress with a lot of interest because there are obviously areas of common ground, except the obvious one which is I'm not pregnant!
Maybe this will be just the start of a bigger world wide community forming as there is still relatively little info about this condition and its causes and there doesn't appear to be a great deal of research being carried out. I'll just have to keep looking.

That just about covers things for now and hopefully the improvement will continue. It's vital that I get back to work as soon as possible as it's cost me a fortune in lost income whilst off and money put aside for the house is now being used for luxuries such as food! Fingers crossed that things will turn around sooner rather than later.

Another Apppointment, Another Drug.

2008-07-14T10:56:00.010+01:00

With the women of the house still away in Japan it was just meant to be me and Sean for the week, however on Wednesday (9th July), I must have had something dodgy to eat which resulted in a severe stomach upset and a call for emergency intervention from my mum to help look after Sean as I was incapacitated. I was completely wiped out and concerned that I wouldn't make my Renal and Occupational Health appointments the next day. It was even more important that I attend as the weight gain and fluid retention were getting out of control. The weight had peaked on Wednesday morning at 96.4kg (15.18stone) and my whole body looked more bloated than ever. Being taken ill reversed the trend somewhat as I had dropped to 95.4kg the next morning. My blood pressure went on a bit of a whirlwind tour, going from 168/106 when I was taken ill to 109/72 the next morning.

Anyway, the next day although knackered I felt healthier and attended said appointments. First off was the Renal dept. My results were quite positive. Protein leakage had reduced by 50% from 9g to 4.5 and albumin had increased from17 in April to 22. I pointed out my concern about the continued weight gain and oedema which it was agreed was a significant problem. I was prescribed Metolozone 2.5mg once a day, another diuretic, which apparently works well in conjunction with the Furosemide I was already on. The Furosemde was increased to 120mg twice a day. The idea was to get me to lose 1kg a day. I could adjust the amount of metolozone between 2.5mg every other day to 5mg daily based on how the weight loss was going. I could adjust the Furosemde also. It was confirmed that I will need to be on a high dosage of Steroids (Prednisolone 50mg) for at least 6 months to induce a partial or full remission but I may still have to transfer to something else e.g Cyclosporin if progress is unsatisfactory.
The only negative from the appointment was that my Cholesterol level had increased to 8.5 but I was told that fluctuations like that are common with Nephrotic Syndrome.
For those that may be interested the other blood results wereSodium 136, Potassium 4.3, Creatinine 115 Haemoglobin 13.3, W.C.C. 25.4 and Platelets 357.
Next appointment in 4 weeks.

Then, a short while after I had my appointment with the Occupational Health Dr. It was agreed that going back to work full time would not present any problems and after a couple of weeks I could then start doing extra hours and/or nights if required. Thank god for that. Being off has cost me a lot of money and the bank account has been groaning somewhat under the pressure. Mind you others have benefited from my enforced absence, both financially and probably emotionally!

I commenced on the new tablets straight away and my relationship with the WC became even more of a partnership. The consultant wasn't wrong about how effective the combination could be.
The next few days showed a significant weight drop over about 6kg

Date Weight Kg. Weight St.

10/07/2008	95.40	15.02	Commenced Metolazone
11/07/2008	92.40	14.55
12/07/2008	90.70	14.28
13/07/2008	89.80	14.14	Furusemide 80mg. Omitted Metolozone
14/07/2008	89.80	14.14

I omitted the Metolozone and reduced the Furosemide on the 13th due to the rapid weight loss and the fact that I was travelling to Heathrow that day to pick up the women of the house.

Things are definitely looking better. Although my face, fingers and feet are still quite swollen, my legs aren't as bloated and I'm not having occasional breathless episodes like before.
I'm still having cramping problems in my hands which is something I'll need to discuss at a later date, probably with the Renal Dietician.

Well that just about covers everything. Just see how things go back at work.

Who Ate All The Pies?

2008-07-07T13:00:00.001+01:00

Just a quick update, covering the past week.

My weight is still giving me cause for concern as I crashed through the 15 stone mark during the week. I put this down to a combination of things, Steroids, Fluid retention and increased appetite. Even though my diuretics keep getting increased there seems to be little or no improvement with regard to the swelling around my ankles and stomach and to my feet. My face is looking different also. Much rounder and fatter. Some people have tried to say I look healthier because of it, as in their opinion I looked quite gaunt previously! Ha! I'm not having any of it. As far as I'm concerned I just look fatter and until the process can be reversed I'm not going to be a happy camper. Here's a chart of how may weight has continued its increase in the last week or so.

Date

Weight Kg

Weight Lbs

Weight St.

BMI

22/06/2008	93.60	206.35	14.74	27.95
23/06/2008	94.50	208.34	14.88	28.22
24/06/2008	94.00	207.23	14.80	28.07
25/06/2008	94.40	208.12	14.87	28.19
26/06/2008	94.40	208.12	14.87	28.19
27/06/2008	94.00	207.23	14.80	28.07
28/06/2008	94.00	207.23	14.80	28.07

01/07/2008	95.20	209.88	14.99	28.43
02/07/2008	95.80	211.20	15.09	28.61
03/07/2008	95.80	211.20	15.09	28.61
04/07/2008	96.10	211.86	15.13	28.70
05/07/2008	95.40	210.32	15.02	28.49

06/07/2008 95.80 211.20 15.09 28.61

As for my Blood Pressure, that hasn't shown any dramatic improvement but it does appear to have lowered a little bit and is starting to level out a little bit. Still early days though, so I'll see what conclusions the Nephrologist comes to at my appointment with him on the 10th July.

Went to the fracture clinic last Thursday morning and was advised to keep the toe strapped for another couple of weeks. Started back to work on Thursday afternoon for 4 days before being on Annual Leave for a week so as to look after Sean while Naomi and Sumika are in Japan for the 1 year memorial service for Naomi's dad. They'll be due back on the 13th, meaning Sumi will go back to school the next day and Naomi will likewise be back at work. They'll both be knackered!
Apart from seeing the Naphrologist on Thursday I'll also bee seeing the Occupational Health Doctor for a review. Both appointments should be interesting because I'll have Sean in tow and he doesn't exactlly have the ability to sit quietly in the background!

Latest visit to the Consultant

2008-06-20T18:50:00.006+01:00

Went to see the Nephrologist on the 19th June. Should have been the 26th but it was brought forward due to the concerns I raised regarding the fluid retention and subsequent major increase in my weight.
The morning of the appointment my weight was 95.1kg compared to 89.8kg on the 1st June, nearly an increase in 1 Stone in less than 3 weeks. That's a lot of fluid!
My appointment with the Nephrologist was around midday as opposed to my usual time of between 4 and 4.30pm. This meant that I was there when they were having the turnaround of the dialysis patients, those that were coming out after their 4 hour morning stint and those that were arriving for their afternoon clean out.
Whether it was an unusual group I don't know, but I didn't see anybody who looked younger than their early 50s and some were considerably older than that. It did make me wonder if younger Renal Patients opted for C.A.P.D. as opposed to Haemodialysis
This is one of the things I'll have to consider, if and when I go into complete Renal Failure. The sociological aspect of spending 3*4 hours (at least) a week with people considerably older than me but with the same condition, as opposed to carrying out my own dialysis at home but 4 times a day! Hopefully that is still a long way off.

I finally went in half an hour later than scheduled but it wasn't a problem. I explained my concerns about the fluid retention and handed over my charts of Daily Weights and Blood Pressures. The registrar who had had a lot of input with me in the hospital was present also.

My blood results showed that my Cholesterol level was continuing to drop, now 7.7 (from a previous reading of over 9) as was my Creatinine level to 99 (from 112 previously). The protein leakage was still high though. I did ask if I could be sent copies of the results and they said that I would get a copy of the report sent to the G.P. As yet I haven't received it. I'll give it to the end of the week and then call them if there's nothing forthcoming.

The main changes to my medication regime were to
a) Increase my furusemide to 80mg at breakfast and lunch to hopefully turn things around regarding the fluid retention. Weight this morning was 94kg, so some improvement thus far.
b) Commence me on a further tablet for my blood pressure in addition to the ones I'm already on. This presented a slight problem as the drug in question hadn't had NICE (National Institute for Clinical Excellence) clearance for that long and Colchester hadn't got round to drawing up their protocols for administering it. As luck would have it, one of the hospital pharmacists was in the Renal Dept. at the time and said that this could be sorted out by the beginning of the following week. I picked up the tablets today (Tuesday 24th June). I hadn't been able to remember their name so I thought I'd wait until I got them before completing this particular post.

The tablets are called Aliskiren (Trade Name Rasilez) and relevant info about them can be found here and here
I'm on 150mg per day, which I will take in the evening along with the other drugs for my blood pressure.
Apparently this makes me the first person to commence on this drug in this Trust!
First time I've ever been a guinea pig

Other news
My broken toe is showing signs of improvement. Although slightly painful, I can walk around ok with just a small limp and driving presents no problems. Biggest difficulty is getting my trainers on due to the additional fluid retention problem. I'm due to go back to work next Thursday ( 3rd July) and I can't see that presenting too many (if any) problems. Naomi and Sumi are off to Japan next wednesday anyway for the Memorial Service for Naomi's father who died last year so I'll only have Sean to run around after. My mum's coming up for a few days to look after him while I'm at work and then I'm on Annual Leave the following week (more time off!)

Found some (very) low salt products this past week. Weight Watchers have produced 3 Pasta Sauce mixes which have less than half a gram of salt per jar and no saturated fats. At £1.28 in Asda they're not a bad price either. Also located a couple of low salt mint sauces
a) Tesco Finest Mint Sauce with Balsamic Vinegar (185g) 95p - Twice the price of other mint sauces but very tasty and safe
b) Gordons Organic Mint Sauce (175g) £1.00 - Available from Asda, but obviously still expensive

Been quite impressed with the standard of matches at this year's European Championships. Sad to see Holland go out as they were really exciting to watch, but this was countered by the fact that the cheating dull as dishwater Italians got knocked out as well. Hard to predict a winner, but the only team I can't see doing it are Turkey (so get all your money on them immediately!) I'm not really bothered who wins it now, but at least it's given me something to watch on the tele, even though they still take every opportunity to come up with latest crap about Ronaldo and the "will he, won't he" saga that has kept all the obnoxious journos frothing at the mouth. Personally I'm virtually losing the will to live as this "story" runs and runs. My view is that, if he goes, he goes and we better make sure we get a bloody good wedge out of Madrid and spend it a lot better than we did the Beckham money. (Kleberson?, Bellion? and Djemba(so bad they named him twice)-Djemba, jeez!

That just about wraps up this latest instalment. Will write again soon.

Sumi's dance video uploaded

2008-06-20T18:42:00.005+01:00

Here's a short video of Sumika dancing the Highland Fling at a recent competition in Colchester. She came 3rd and won a nice trophy, a picture of which is in the "Busy Weekend" post.

RSS Feed

2008-06-16T20:39:00.006+01:00

If anyone wants to be informed when the blog has been updated they need this URL address for the feed

http://humanswimmingpool.blogspot.com/feeds/posts/default?alt=rss

That's about as much technical info as I can provide.

Sorry folks, but how you go about incorporating that info into your email readers is down to you but I know that anyone using Outlook 2007 (which is what I use) needs to click on

Tools - Account Settings - RSS Feeds - New

and then put in the above address.

Tell me why, I don't like Sundays?

2008-06-16T00:34:00.006+01:00

After the bread maker debacle last Sunday I hoped this week would be an improvement. Although I was working in the morning, I was looking forward to cooking a really nice roast lamb dinner and celebrating Father's day with the family.
When I weighed myself first thing I noticed that I had put on another 0.4 kg in 24 hours. I decided that I would need to see the GP on Monday as the fluid retention was becoming a major problem.
Everything was going well. Work was uneventful, picked my mum up on the way home as she was going to look after Sean whilst I went to the G.P. on Monday. Got home and made a start on dinner.
I sorted out a Yorkshire Pudding recipe on the internet and when I was walking towards the PC to double check ingredients disaster happened. Obviously my feet are currently much larger than they're meant to be and I have noticed that in recent weeks I have become slightly clumsy on occasions but that's no excuse for catching my right foot on the skirting board whilst walking into the dining room!
The pain was excruciating for about five minutes and when I finally looked at my foot I noticed my little toe was pointing in a different direction to the rest of my toes. Immediately I suspected that it was broken. I went to A&E, X-Rays taken and suspicions confirmed. The toe is fractured at the base. So just a couple of weeks back at work and I'm now off sick again. Bloody typical!
Still planning to see the G.P. tomorrow but now I'll have 2 things to discuss. I'm not entirely sure how I'm going to get there though.
Fracture clinic appointment is set up for 3rd July. My life is now even more dominated by the NHS than it was before.
Amazing thing though, is although I can hardly walk and I'm in quite a bit of pain I'm finding the whole experience/scenario quite hilarious in a bizarre sort of way, but then again maybe I'm just weird!

Anyway here's a picture of the pesky toe in question. The foot looked bad enough with the swelling caused by the fluid retention, but now it has a mangled toe attached to it, it's like something from a Hammer House of Horrors film.

Next Sunday, maybe I should just spend the day in bed!

Dough! Actually that should say Doh!

2008-06-12T07:50:00.012+01:00

In a week when we've had a Friday 13th my bad luck stated early, last Sunday in fact.
In an attempt to reduce the salt in my diet I've been looking at one of the biggest salt contributors, bread. I found a recipe for Tuscan Bread which contains no salt, perfect. I had a go at making it and the results were passable, although it was a bit labour intensive. Far better to use an electronic breadmaker instead of the human kind. Unfortunately our breadmaker has a paddle missing and I can't locate anywhere that sells replacements. So I decided to hit the Sunday boot sale to see if I could get a cheap one.
The very first stall I came to had one for £5, but instead of buying there and then I thought I would have a look around for other options. Nearly proved to be a big mistake as I saw nothing for the next hour, but did manage to get some bargain joints of meat (Approx £30 worth of Pork, Beef and Leg of Lamb for £15!). Had the pork last Sunday and it was delicious. Lamb tomorrow.
Anyway, I was just starting to give up hope (I'd seen the other breadmaker get bought 10 minutes after I'd seen it) when I came to a stall that had 2, one for £30 and one for £8. I managed to get the cheaper one for £6 and although it didn't have a manual I was sure I could locate something on the internet.
Got home, started searching for over an hour but no joy. I thought I'd go ahead with making the bread anyway and used the ingredients from the recipe I had. Oops! this was where it all went wrong. I didn't realise that the ingredients would need a far greater capacity than my new breadmaker had and when it started to rise it completely filled the inside and started to spill out. As the baking process continued the ever expanding dough spilled over onto the heating element and smoke began to rise even quicker than the bread! At this point all the electricity in the kitchen got knocked out by the overload on the breadmaker. There was smoke, a smell of burning and sticky dough all over the place. It's a good job I wasn't auditioning for Master Chef as I'd have had more chance of becoming the next Mr. Bean. Undaunted, I rescued what dough I could from the breadmaker and transferred it to the oven, to finish the baking process off. It ended up looking like a cow pat and probably didn't taste much different if truth be known. It was probably one of the most expensive cow pats in history, taking into account the time, effort and money put into making it. I'm just glad it didn't burn the house down. I'll make sure the next breadmaker I get will contain a manual!

This is how the bread was supposed to look. I forgot to take a picture of how it actually looked.

I can assure you my effort was nothing like that!

Other news

The fluid retention has been particularly bad this week and as I result my weight is really increasing quite dramatically.

Date	Weight Kg	Weight Lbs	Weight St.	BMI
01/06/2008	89.80	197.98	14.14	26.81478
02/06/2008	91.00	200.62	14.33	27.1731
03/06/2008	91.00	200.62	14.33	27.1731
04/06/2008	91.80	202.38	14.46	27.41199
05/06/2008	91.30	201.28	14.38	27.26268
06/06/2008	91.30	201.28	14.38	27.26268
07/06/2008	92.00	202.83	14.49	27.47171
08/06/2008	92.00	202.83	14.49	27.47171
09/06/2008	92.20	203.27	14.52	27.53143
10/06/2008	91.90	202.60	14.47	27.44185
11/06/2008	91.90	202.60	14.47	27.44185
12/06/2008	93.30	205.69	14.69	27.85989
13/06/2008	93.60	206.35	14.74	27.94948
14/06/2008	94.00	207.23	14.80	28.06892

4Kg in 2 weeks is not good. I'll soon have to change the name of the Blog to OlympicSizeHumanSwimmingPool!

At least my Blood Pressure is staying reasonably stable, although my skin is starting to feel stretched and dry. Probably due to the fluid retention and steroids. It's less than 2 weeks before I see the Nephrologist again so I'll try and hang things out until then but if things continue as they are I might go and see the GP first.
One good thing is my mood has been a lot better this week. I haven't been like the cantankerous old bugger that I was previously and hopefully that will continue.

Sumi was sent a little photo album of pictures taken by my brother at the recent Highland Dance comp. Here's my favourite. Hopefully have some video from the competition uploaded in the next week also. That's all for now.

Michelin Man!

2008-06-07T09:21:00.006+01:00

Weight and Blood Pressure wise it's been a topsy turvy week.
This morning my weight had gone up to 92kg (about 14 1/2 stone). That's the heaviest I've ever been.

Date	Weight Kg	Weight Lbs	Weight St.	BMI
01/06/2008	89.80	197.98	14.14	26.81478
02/06/2008	91.00	200.62	14.33	27.1731
03/06/2008	91.00	200.62	14.33	27.1731
04/06/2008	91.80	202.38	14.46	27.41199
05/06/2008	91.30	201.28	14.38	27.26268
06/06/2008	91.30	201.28	14.38	27.26268
07/06/2008	92.00	202.83	14.49	27.47171

As for my blood pressure, that is still higher than I would like, even though my drug regime has been increased. This is how it has been since the start of June. (Date/Time/Systolic/Diastolic/Pulse)

01/06/2008	6.30	138	85	81
01/06/2008	20.00	147	93	94
02/06/2008	0.30	132	84	79
02/06/2008	5.30	147	88	76
02/06/2008	13.00	134	82	81
02/06/2008	20.00	164	84	84
03/06/2008	6.00	131	88	79
03/06/2008	13.30	153	86	85
03/06/2008	22.00	129	79	80
04/06/2008	6.00	152	92	83
04/06/2008	12.30	145	82	92
04/06/2008	23.45	139	86	84
05/06/2008	6.00	144	94	78
05/06/2008	10.00	139	79	95
05/06/2008	23.45	151	89	79
06/06/2008	5.30	143	86	77
06/06/2008	11.00	154	83	87
06/06/2008	23.45	156	89	82
07/06/2008	7.30	145	88	84

The ongoing fluid retention is proving particularly aggravating. My feet now seem to be permanently swollen and the oedema in my legs now virtually goes all the way to my knees. All this is happening, even though my Furusemide is now 80mg a day (I took an extra 40mg the other day, without any noticeable difference).
In addition to these issues, I had a letter for an appointment with the Renal Dietician. October! Obviously I'm not viewed as a priority.

On a happier note, I've found an excellent website that has a load of recipes for a low salt, low fat, low potassium diet. The site is obviously designed to promote their own products but it is the sort of thing I've been looking for. I've had a check to see if I can get any of the stuff advertised in England. Ebay has some listings of the herbs and spices, but no joy with regard to the marinades, especially the "no salt" Teriyaki. I'm trying to think of a way that I can get it sent from America but I don't know the law regarding importing foodstuffs. I'm sure I'll find a way.
Here's the link to the site anyway

Low-Sodium-Recipes

On the subject of salt substitutes, a little bit of research has shown that something called Liquid Aminos can be used instead of sauces like Soy. Holland and Barrett sell a version called

Aminos Liquid

There is also this one on Ebay which is a possibility

Bragg Liquid Aminos

Well all that has given me food for thought and something to get my teeth into! Decisions now to be made. Back soon

Moscow Videos Finally Uploaded. WooHoo!

2008-06-04T08:37:00.006+01:00

After what has seemed an eternity I've managed to get video that I took of the penalty shootout on Youtube.
For some reason the dvd drive on my PC would not read the 8cm DVD that my Camcorder uses. I tried everything to sort out the problem until someone was able to transfer it to a normal size DVD, thanks Steve.
Anyway, due to the size of the video file, the recording has had to be broken down into 3 parts, just click on the underlined links.
Apologies for the ugly mug on Part 3, but I was slightly excited, as you can imagine.

Part 1

Part 2

Part 3

Busy weekend

2008-06-03T14:42:00.007+01:00

Well the weekend that's just gone has been the annual "Scotland in Colchester" event where Lower Castle Park is turned into a mini version of the Edinburgh tattoo, but focussing specifically on Bagpipes, Drums, Marching and Highland Dancing. It makes for a pleasant day, providing the weather's ok but a lot of work goes into it.
I usually assist in helping put up the dance stages. I was slightly concerned on my fitness levels but apart from a problems in my hands Saturday morning, pain and contractures going on for about an hour until the multivitamins kicked in, generally things went very smoothly. It was handy having more relatives of the dancers helping this year so the stages went up pretty quick. Whilst I was doing this the family were enjoying themselves taking part in the Scottish Country Dancing. Even Sean had a go. Looks like I got the bum end of the deal!

Come Sunday, earlier concerns that we'd had about the weather didn't come into play due to what rain there was cleared early leaving an overcast and slightly chilly day but at least a dry one. We left home at 8 so we could get parked up and prepared for the competition,
Whilst preparing our stuff and putting the changing tent up an unleashed dog ran over to our food bags, stuck his snout in and attempted to nick a load of croissants. I managed to get him away but the food was now inedible. I saw the owner walking over and instead of apologising he just put his dog on the lead and started to walk off! I sarcastically shouted "Thanks for the apology!" to which the dog owner replied "You shouldn't leave food lying around!" Big Mistake. I went potty and fired off a load of expletives at the bloke. Fortunately he kept walking and didn't turn round. If he had done and come back towards me it could have got nasty. As I said to one of the other dads, who had also had a pop at the bloke, don't mess with someone who's on 50mg of Prednisolone a day and is trying to quit smoking!

Anyway, after that things settled down and the competition went well. The other dancers from Sumi's School of Dancing did particularly well with a number of trophies being won and virtually everyone picking up medals of of all colours. Sumi got third in the "Trophy Fling" and got a nice trophy as a result. Will upload a video of her dancing when I can.

I thought she was unlucky not to get a place in at least one of her other dances, The Flora MacDonald, but I'm no judge and may well have missed something. Having said that I was still very proud of her effort and performance, especially as her dance teacher couldn't be present to support her due to having to be in Scotland at the time.
Everybody had a great time and it was great that both my brothers (and their wives) could be there also especially as their stomachs are even bigger than mine, which obviously meant my fluid retention didn't look as bad as usual. A work colleague of mine and her family came along as well which was great also.

Later on we took the dance stages down and although my arms were starting to cramp up it wasn't too much of a problem. A quick game of bowling on the Wii when we got home where my brother managed to get beaten by everybody gave a nice finish to an enjoyable day.

Monday, back to work after nearly 7 weeks away. Nothing much to report. Spent time catching up on what's been going on and gradually easing myself back into the grind. Only working 2 days this week, Monday and Wednesday, then 3, then 4 and then back full time. Meeting with Occupational Health at the end of the month to see how things have gone. Can't see there being too many problems, but I must keep a lid on my temper. Fortunately I shouldn't encounter too many idiot dog owners at work!

Finally, after a number of false starts I might be in a position to upload a video of the penalties in Moscow in the next couple of days. Fingers crossed.

Appointments' Day (BOGOF? Buy One, Get One Free)

2008-05-29T17:11:00.006+01:00

Just got back from the Renal Unit after my latest appointment with the Consultant Nephrologist. This following my appointment with the Dietitian this morning. I'll deal with that one first.

The appointment with the dietitian went well and I finally got some diet sheets relating to a no added salt diet. I let them know how stressed out I had been with the whole diet issue and trying to combine a low salt diet and a low fat diet, and them not getting back to me had added to that stress. Apologies were offered and the slate wiped clean. Some good progress was made. My recent blood test showed that my cholesterol had dropped to 9 which is still excessively high but a bloody sight better than 15! At least all the dietary sacrifices I'm making are showing some results. The dietitian also agreed to pass me onto the Specialist Renal Dietitian, which is what I've wanted all along. Generally they don't get involved until someone has or is about to commence on dialysis, but obviously I want to delay that as much as possible, so therefore if I can get much more condition specific advice regarding my diet then I'll do all I can to receive it.

As for the appointment with the Consultant, that was definitely a much more pleasant experience than last time when I was suffering from that horrendous migraine. Fortunately I haven't had a headache for well over a week, and long may that continue. They pointed out I looked better, well it would have been impossible to look worse than last time. A corpse would have had more life in it! I was weighed, but have no faith in their scales as it came out at 94kg. Even allowing for extra clothing that seemed a crazy figure when my own scales are currently showing me as under 90kg. I handed over a printout of all my weight, BP and pulse monitoring charts, which appeared to be gratefully received, although he still wrote the 94kg in the notes!
He agreed that the reduction in the cholesterol was good but it was obviously still at dangerous levels. Also my BP was higher than he would like and the fluid retention, was still problematic. My blood results showed that my Albumin was slightly higher but obviously on the low side due to the leakage of protein into the urine. Creatinine was 112 (normal range is between 60 -120 umol/litre).
As a result of all this there was a bit of tinkering to be done to my drug regime. Amlodipine to be doubled to 10mg to try and reduce my blood pressure. Atorvastatin to be increased to 80mg to help with the reduction in my cholesterol levels and Furusemide to be split to 40 in the morning and 40 at lunch to see if that would help get rid of more excessive fluid over a greater part of the day. If need be I could take an extra 40 in the morning if there appeared no sign of improvement, but I needed to be careful that I didn't put myself at risk of dehydration. I'll just play it by ear. All other meds. to stay at the same levels, including the Nystatin 4 times a day. That will only be reduced when my steroids come down to a maximum of 30mg per day.
And with that I was told to return in another 4 weeks. Mind you I still grabbed the opportunity to chat about my Moscow trip and when the Consultant informed me his son was a Chelsea fan I resisted the chance of openly gloating but maintained a smug grin inwardly.

Highs and Lows

2008-05-28T09:11:00.008+01:00

Well it's a week since the Champion's League Final, and I still have a slight feeling of disbelief that I went to Russia to see my team play and win. I've yet to watch the match on Sky+ due to having a load of other stuff to get through.
Since I got back there's been a mixed bag of activities and events to deal with some good, some bad, most mundane.
I've finally got an appointment to see the Dietitian, 11am, 29th May (I see the Nephrologist in the afternoon also, which is handy). I had to complete a 3 day food diary. Looking at it, a couple of things come to light. 1) I'm eating a hell of a lot 2) I'm still consuming too many saturated fats. It will be interesting to see what my Cholesterol levels come back as. I had blood tests done last Friday (23rd) so the results would be ready by the time of my Consultant appointment, because it being a Bank Holiday on Monday.
Had friends from Ireland come and visit us on Sunday, so we had a great big roast dinner and although no salt was added, and olive oil was used for greasing the baking tray the amount of potatoes, Yorkie Puddings, gravy and mint sauce I consumed must have had some effect on the fat and salt running around my blood stream. I'm sure the dietitian will take great delight in giving me the third degree. As long as she gives me a decent diet sheet as well then I won't be too bothered!
Haven't had a headache for well over a week, which is great but my temper is getting worse. Have lost it a number of times recently, particularly stroppy outburst from me last night. Something I'm going to have to keep a close eye on. Probably due to the steroids and not smoking, but it is a concern.
Still monitoring my weight, BP and pulse daily. Very little change in all of them. Weight around 90-91kg and BP 140-150/80-90. Both too high but nothing more I can really do. The fluid retention is still severe, especially my feet and ankles, so maybe the Furusemide will be increased again. Watch this space.
Looking forward to this Sunday, as it is the "Scotland in Colchester" weekend (weather permitting!) and Sumika will be competing in the Highland Dance competition from 10am onwards. She did particularly well last year, winning a couple of trophies and a load of medals so fingers crossed for her this time. It will be tough though as she's competing against 5 other girls from her own school of dancing let alone those that are travelling from other areas. Hopefully these photos from last year's comp will inspire her.

Actually, I've just remembered, I've got to clean that trophy as it's got really tarnished over the last year and has to be returned on Sunday. Deep joy. Added to a load of paperwork I need to get done today, looks like I'm in for a fun few hours. So much for being off sick and relaxing!
Ah well, next report should be an update on the Dietetic and Renal appointments. I'm also hoping to upload some video of the Russia trip if I can get my head around the technology side of things. See how it goes.

Thanks John Terry, You made my trip complete (Part 3)

2008-05-25T08:36:00.010+01:00

Day 3 - Post Match Entertainment

After all the celebrations and then being held back by the authorities we finally left the ground at about 2.45am. How surreal is that? First time I've ever watched a football match that lasted 2 days!
Finally got back to the coach, which nearly didn't happen due to a very stupid and awkward local policeman who was determined to stop us going up the road where the coach was parked. In the end, we just ignored him and walked past the police cordon anyway. To be fair, that was the only time we encountered any problems with the police, who generally kept a low profile and didn't hassle us, unlike the police in Spain who are racist scum as far as I'm concerned, especially when it's to do with English football supporters.
When we got back to the coach, Mark, the secretary of our supporters' Club and the organiser of our trip announced that he had arranged for a local bar to be opened for us to continue our celebrations.
We got to the bar at about 4.30am and had a fantastic time. All the problems with the accommodation were forgotten, thanks to Terry's miss and Edwin's save (not forgetting Ryan's penalty, on his record breaking 759th appearance for the club. What a player)
Song's of the night included

About the game

He slipped, he missed,
He must be f***ing p***ed
John Terry, John Terry

John Terry, Terry
Missed a penalty
United made it three
John Terry, Terry

About our Accommodation (To the tune of Oh When The Saints)

The Vataniki is never full
The Vataniki is never full
Except when you play United
The Vataniki is never full

The jokes came thick and fast also

John Terry, Made in England, Bottled in Moscow

What's the difference between The European Cup and a Chocolate Orange?
The Cup is Rio's and the Chocolate Orange is Terry's!

There were loads more, which I texted to my Chelsea supporting mates Bill (who I met up with at the game) and Steve. I thought Bill's reply was particularly rude! LOL

I finally left the bar at about 7.30. I'd only had a couple of drinks due to my health, but I could still hardly walk because of severe leg cramps. My voice had almost disappeared also, to the relief of everyone else also I reckon. After getting a bit lost and completely soaked in the torrential rain I finally found my way back to the "shack" for a few hours shuteye. Got up about 11.30 and went to breakfast. Had a row with one of the staff who kept saying "no milk" when I asked for some for my coffee. As soon as I started losing my rag, amazingly a jug of milk appeared. If I'd known being a right stroppy git gets you what you want in Russia, I'd have tried it earlier!

My intention had been to go into Moscow again to do some shopping. I really wanted Russian hats for me and Sean (son) and a Russian doll for Sumika (daughter), and obviously a decent present for Naomi (wife). However due to the weather, time constraints, pains in my legs and stomach I had to decide against it and keep my fingers crossed that I could get something in the Airport.

A group of us decided to go back to the bar. Good idea.
As luck would have it, the game was being replayed on the T.V. so we all watched it again.

We weren't able to watch all the game as we had to get back for the coach to the airport. We returned to hell and a crowd of us sat around the little T.V. in our lounge to catch the end of the game. The tele was only working in Black and White but nobody cared. Our courier started to get panicky but we were all determined to watch the penalties. The cheers that went up were heard by those who went to the coach earlier. They were not impressed that they had been kept waiting for about 15 minutes, but as our "landlord" had said the previous morning "Life is not always Perfect". On this occasion he was wrong. We had won the European Cup and life could not be more bloody perfect!

We finally left for the airport. I'd had a text from Bill saying that his flight earlier had been delayed by 4 hours so was not surprised to eventually find that ours was going to be delayed by at least 2 hours. At least it gave me plenty of time to get the shopping I wanted. Unfortunately the shopping areas could have been any airport in the world. It was nearly all designer stuff and hardly anything with a Russian theme. There was a stall with a Souvenir sign but the prices were even worse than were being asked for at the football stadium, nearly £50 for a T Shirt! There was one shop selling Russian goods and I decided to get a Russian doll for Naomi and Russian chocolate for the kids.Finally it was our time to leave.

The plane back had even less room on it than the one to Russia, but no worries.
Finally got home about 3am UK time, knackered but totally chuffed.

What could have been a totally disastrous trip ended up being one of the greatest times of my football supporting life. It doesn't get much better than this.

THANKS JOHN TERRY

(and thanks to z for this)

Thanks John Terry, You made my trip complete (Part 2)

2008-05-23T20:33:00.016+01:00

DAY 2 - The Game

Decided to go into the stadium about an hour and a half before kick-off. Had an excellent seat behind the goal, at the top of an isle near the exit. Easy access and egress. Basically the view was as good as can be expected when you've got an Olympic running track, high jump sector and all the other space required that's associated with the 4 year event in front of you. The authorities could have provided everyone with binoculars. It's not as though they hadn't made a few quid out of us!

As the start time got closer, the atmosphere gradually grew and various groups of people were wandering around in either leotards or long red capes. It was obvious there was going to be some sort of cheesy opening ceremony, that the powers-that-be love to put on and everyone else just thinks it's crap! Ah well, it would be good for a laugh, and so it proved. About 15 minutes before kick off the pitch was filled up with a combination of mobile stars (some containing balloons), banners relating to the 2 teams and all the people we had seen earlier. They then started their dance routines. As I was watching them running around the pitch all I could think of was that I was watching some sort of Dom Deluise convention and everyone had arrived dressed as Captain Chaos (from Cannonball Run)! All it needed was someone to shout over the tannoy "Da Da Daaa" and the night would have been complete. The photo I took was too blurred to show, due to my laughing so much at what was being presented. I managed to get a picture online though.

UEFA pays homage to Dom

The teams finally emerged to a crescendo of noise, balloons and poxy press photographers. I hate the press. They couldn't give a toss about who they are writing about or photographing but they make sure they get right in the way of those who actually do care. The penalty shoot-out at the end was a case in point where they were allowed to stand right behind the goal, which meant that any shots hit low you couldn't see enter the net unless you were the Chelsea fans at the other end of the pitch (about 5 miles away it seemed!). At least Terry and Anelka got their shots off the ground so us United fans got a really good view of their tragectory and subsequent failure to find their target!

The game itself was a tense affair, which United dominated first half, Chelsea second half and United shaded it in extra time, before winning on penalties.

Main points to highlight from the match
1) Ronaldo's goal. So much for the rubbish about him not doing the business in the big games

2) Chelsea's equaliser. Why we weren't at least 2-0 (could have been 3) before that happened only God, Cech, Tevez and Carrick can answer. The fact that it came from a double deflection, a Van Der Sar slip and at the end of the first half just made it all the more galling.
At this point, I hope that we will see no more of Lampard's public displays of grief whenever he puts the ball in the net in the future. It's starting to look tacky at best and downright self indulgent at worst.
3) Me making a complete pratt of myself thinking it was Carvalho that had been sent off, not Drogba, and going absolutely potty because he wouldn't leave the pitch! In my defence, he was standing next to Drogba when the red card was shown and someone later on also thought it was him that had been sent off.
4) The abuse given to Ashley Cole throughout the game was certainly warranted and long may it continue.
5) Joe Cole, Makelele and Malouda did well to still be on the pitch at the end of the game. Cole's rant at the ref reminded me of when Rooney told Graham Poll to go forth and multiply. Maybe the ref's English wasn't as good as it should have been.
6) The celebrations at the end were fantastic, especially when Rio led the team away from the security of the playing surface to get up close to the people who really matter, the supporters. The press, as usual, still got in the way, making it somewhat difficult to get really clear pictures. Mind you I was filming at the time and the penalty shoot out came out particularly well. Just trying to get it uploaded to the internet at the moment. (Link will be posted as and when). One person from our group took some great photos with his digital camera and I'll post a link to them when I hear from him. Anyway, you'll have to make do with these 3 (1 nicked from the internet, 2 of my own. I'll leave you to guess which are which!)

I'm famous! (Sort Of)

2008-05-23T20:09:00.010+01:00

Part of my blog has appeared in a Free Russian Magazine that was doing an article about football blogs and the Champions' League Final.
Thanks to Helena in Moscow who sent me the link

http://www.bg.ru/article/7483/

They took the part of " Moscow, Can't Go, Won't Go" where I was agonising over whether to go to The Final.

It looks quite impressive in Russian

«Москва: не могу поехать, надо ехать»
HumanSwimmingPool Blog, 3 мая

Полуфинал я смотрел в больнице. «Манчестер» выиграл! И едет на финал в Москву! И мне, конечно, тоже надо бы! Но увы — прошли те времена, когда я ездил за любимой командой повсюду, по 40 матчей за сезон. Теперь дети, жена, закладная на дом… К тому же у меня болезнь почек. На стадионе сложновато: каждые 10 минут надо ходить в туалет из-за диуретиков, тело раздуло, так что и сидеть не очень удобно. И надо прикидывать расходы. <…> Мой мир рухнул, когда я узнал, что съездить на финал стоит больше 1 000 фунтов. Я просто не могу себе этого позволить! Но с другой стороны… Я мучился ужасно и в конце концов написал список.

Почему надо ехать:

1) Я пропустил финал в Барселоне в 1999-м (и поклялся, что еще один финал с «Манчестером» не пропущу).

2) Когда в следующий раз «Манчестер» выйдет в финал, я могу быть уже настолько плох, что физически не смогу пойти. (Может, я уже умру к тому времени!)

3) Чтобы сказать: «Я там был».

Почему не стоит ехать:

Я не могу себе этого позволить!

В общем, я принял решение. Возьму кредит в банке! А как буду выплачивать, подумаю потом. Жена, слава богу, все поняла и согласилась. Волнуется только, что в Москве очень соленая еда, а мне это вредно. Пообещал ей, что буду следить за диетой и не пить много.

Typical English/Russian Exchange Rate
I pay extortionate amounts for everything (Except the Metro) over there and they get my Blog for free!

Thanks John Terry, You made my trip complete (Part 1)

2008-05-23T15:45:00.021+01:00

Got back home from Moscow at 3am this morning (following a 2 hour delay taking off from Russia), and am still trying to get my head round the events of the last few days. The trip could have been an absolute disaster for many reasons which I'll get onto later, but actually turned into one of the greatest events in my life, and the Chelsea captain (plus Anelka) will have my unswerving gratitude for ever more as a result.

But before I get ahead of myself, I hope you're sitting comfortably as it's going to be a long and bumpy trip.

DAY 1 - The Flight

Everything started well. Got to Stansted ok through check-in no problems. Apparently I was spotted on Anglia TV, so at least I could prove I went to the airport! After some delays we finally boarded our plane. The age it looked gave some indication as to the fact that in many ways we were going back in time. I was lucky regarding seating as I was sat next to an emergency exit so had loads of leg room. I think the guy on check-in took sympathy on me when I was enquiring about possible issues I might have carrying loads of medication into Russia. He obvously thought I might be at Death's door so needed loads of room for any emrgency treatment I might have to undergo during the flight. 90% of the passengers weren't so lucky and had to endure leg room that a circus dwarf would complain about for the 3 1/2 flight to Moscow. I wasn't lucky on the return flight though, so can sympathise with what everyone had to put up with. Having said that, the crew were excellent, food good and the flight was generally uneventful.

DAY 2 - The Arrival

We arrived at an airport with an unpronouncable name of Домодедово (Domodedovo), had some delays waiting for our coaches and finally set off for our 4 Star (sic) hotel. We arrived at the unearthly hour of 5am (Russian time), following a couple of wrong turns into open fields and general confusion all round. However this was minor compared to what greeted us when we finally arrived at our destination. Our courier told us that we were going to a place that the Muscovite workers would go to for their summer holidays. They either had no money or it was some sort of punnishment because it was bloody awful. The website that had been used to book it had showed a very nice looking hotel (4 star as mentioned) but what we were taken to was straight out of Hi De Hi (Eastern European Style). The rooms were shoe boxes with 3 beds squeezed into them, and 2 rooms (6 beds) per section shared 1 toilet/shower. Some people ended up with flea bites, spmeone saw the local wildlife (a couple of rats!). Some people had paid for a single occupancy upgrade but still had the same set-up as the rest of us. When people started to point out how poor it all was the man telling us where we were to go could only come out with these words of wisdom "It is very ice" "Other places are expensive (this was bloody expensive £200 per night), and my favourite, "Life is not always perfect" hehe Classic!
Anyway, due to the time and the fact that everyone was knackered not much of a fight was put up, and people went to their rooms to get some shut-eye prior to having a late breakfast at 11am.

DAY 2 - Moscow

After a thoroughly uninspiring breakfast, people wanted to get into central Moscow. various negotiations were made with various taxi drivers and private car owners. I went with my room mates Andy and his son Ross in a private car. It was one scary ride. Lane laws don't seem to exist in Russia and we were nearly wiped out a couple of times by our driver who we reckoned was taking a sicky so he could make some roubles out of us Brits. He turned out to be a decent bloke, although I thought of the film "Hostel" on occasions. We got to Red Square eventually and did the touristy bit of looking at St. Basil's (smaller than I thought it would be), Kremlin (big!) and the football fan zone area in the Square. Also saw ex Arsenal (talented) footballer and current (completely untalented) T.V. Presenter Ian Wright.

We then met up with some others from our group to go and get something to eat and probably some gifts also in a possibly cheaper area of Moscow as recommended by the Football Supporters Federation. We managed to find a decent looking bar restaurant with reasonable prices. It was busy but not heaving, but that still didn't speed up the service which resulted in us waiting an hour for our drinks and 2 hours for our food! Meanwhile the atmosphere was really starting to build up as the alcohol started to take hold with a number of our fellow Reds, one of which was a mate of ours who had negotiated a good price on a Russian hat. The locals were fascinated by the singing and dancing of the Reds and plenty were taking photos. Our mate handed his hat round and raised the equivalent of about 20 quid! He passed all the money onto the Bar Maids. These are the stories the papers never report. The atmosphere was brilliant and there wasn't a hint of trouble.

DAY 2 - Prior to the Game

By this time we were ready to get going to the Stadium. We took the Metro, which is brilliant if you know what you're doing. Although we made a couple of errors it was the best 19 Roubles (about 50p) we spent per person, for a single trip, however far.
I had been hoping to meet up with a Chelsea supporting mate of mine called Bill in Red Square, but due to delays with his flight (he was doing a one day trip) and coach being caight in the horrendous traffic I'd had to let it go. Pity, but never mind. We got to the Stadium and had some Program sellers trying to scam us out of 400 Roubles for a program that was priced at 260. Closer to the stadium they were "only" asking 300. The locals trying to rip you off is bad enough, but UEFA are an even bigger disgrace. T Shirts and scarves being sold for 1000 Roubles (£25) in the official merchandise stalls, Chicken Burger 300R (£7.50) and a small soft drink 200R (£5). I hope Platini is proud of the organisation he heads and how they don't give a toss to football supporters.
Time was spent in the area just outside the Stadium, including the FanZone , which was quite crap to be honest, and having the occasional (expensive) thing to eat. Suddenly I got a text from Bill, saying he was at the Stadium and we arranged to meet up. Excellent. It was quite a surreal moment, especially as we were engaged in a thoroughly covivial chat while Reds and Blues were verbally ripping eachother apart right next to us across a manmade divide. The local constabulary started to get nervous and moved them (and us) further apart and that was that. Good to see you again mate and have a photo that shows that football is not just about hate and bitterness (unless it involves Kopites!)

Quick update

2008-05-19T23:50:00.003+01:00

In less than 24 hours I'll be in Moscow.

Health wise , a bit of a mixed bag. On the good side I've not had to take any paracetamol for the last 3 days, as the headache seems to have nearly all gone. Everything else, on the other hand is still basically the same, waking up early, B.P aound (145-150)/(80-90), eating too much and as a result weight continuing to rise. Even with the increase in my diuretics, the fluid retention in my feet is still pretty excessive. I wonder if they'll explode at 35,000 feet!

Actually got an appointment through for the Dietetic Dept this morning. It's for 11am 29th May, same day I'm seeing the Nephrologist. Hopefully some positives will come from it and I'll have a better idea how to manage my diet. I've got to do a 3 day food diary prior to the appointment. The amount I'm eating at the moment will make it difficult to fit it all in.

Anyway, busy day tomorrow, preperations for the trip and hopefully a major stuffing of Chelsea to follow! Unbelievably a Liverpool supporter said to me today that he wanted Utd to win. I won't mention his name, as you could see the embarrassment in his face when he said it, but it does give some truth to the comment that Utd took decades to be the most hated team in England whereas it only took Chelsea a couple of years!

Ah well, back Friday with, hopefully some great memories and pics to put in the blog. That's if I haven't been stuck in some Gulag due to the amount of drugs (sorry medication) I'm taking to Russia with me.

Tata for now.

Diet!

2008-05-17T08:10:00.001+01:00

Now I wouldn't class myself as a particularly anal retentive type of person but since discharge from hospital one thing seems to be taking over my life, food labels!
I left hospital with a number of tasks ringing in my ears, keep to a low salt diet, careful about the number of saturated fats I am consuming, try to continue to lose weight (through reducing the fluid retention), look after myself.
Trying to get some sort of diet which combines low salt and low saturated fats is not particularly easy, especially for someone like me that doesn't like that many types of vegetables but does love the following
Chocolate, Crisps, Cheese, Chocolate, Marmite, Salted Peanuts, Eggs, Chocolate, Fish and Chips, Bacon/Ham/Pork, Toast, Soy Sauce, Mint Sauce and in case I didn't mention it - Chocolate! The chocolate issue is a major concern for me. My choc addiction is so bad that the kids have to hide their Easter Eggs from me.
It looks like my life is now over.
I had seen a dietician whilst in hospital, who had asked to see me again after discharge. Although she had given me some verbal advice about diet I could have done with some fact sheets that combined the 2 areas that I was going to have to concentrate on. This is now a future plan for my blog, a diet sheet for someone in the same situation as me.
I start doing some research on the internet and come to the conclusion that my options are severely limited.
Vegetables, no added salt when cooking. Also they need to be fresh or frozen, not tinned.
Fruit, although some care required due to the amount of fluid they contain
Chicken, basically the only meat that ticks the boxes. Tesco's "Healthy Option" beef mince is not too bad though and Sainsbury's seem to have a reasonable selection of healthier cuts of meat.
Fish/Seafood, as long as it's not stored in brine. Also best to keep away from filter feeders like prawns and oyster due to the high salt content.
Nuts, unsalted of course.
No more than 2 slices of bread each day, and try and find a low salt version. Not easy actually and I find a number of comments about how high the salt levels are in bread and the damage it's doing to our bodies as a result. I certainly wasn't aware of this until my recent change in circumstances. Some Danish bread is less than 0.3g salt per slice, whereas bread is generally greater than 04g per slice. For a healthy individual the reccommended daily allowance of salt is 6g (3g for me), so bread can make up a big wedge of that if you're not careful.
Boiled sweets, although they are generally high in sugar content and will make my teeth even worse than they already are, I need something to deal with the cravings from stopping smoking.

I get onto my mate Google and start searching for relevent sites that will help me achieve my new dietary plan.
This site gives some good info about why a low salt diet can be good for you, but little info on the foods to eat.

http://www.davidgregory.org/salt.htm

I started writing this article a couple of weeks ago, so by now I should be a little more comfortable with the whole diet thing. Well I would be if I had been sent the diet sheets or appointments promised by the dietetic department. I've heard nothing, so I continue to plough a lonely furrow through the minefield that is food shopping. I have a better understanding of what I can and should not eat and am sticking to it as best as I can, but it ain't easy. I'm going to start making my own bread (with virtually no salt), which should help with the amount I'm eating at the moment. It's a good filler that provides plenty of options. My weight has gone up a fair bit, a combination of the fluid retention and eating too much so that's just another hassle to add to the list!
I'm going to chase up the dieticians next week as quite frankly I'm not impressed and it's a stress I could well do without. On the subject of stress, or in this case cravings, it's funny but I get more cravings seeing people eat chocolate than I do seeing people smoke!
When I've worked out (or been showed) how to set up seperate sections within the blog I plan to have something relating to diet so that people don't have to go through the same grief I have. Until then I'll just have to carry on reading labels!

Occupational Health Day

2008-05-15T19:38:00.004+01:00

Well today was the day when it would be decided if I would be returning to work. Last few days there has been no real change in my condition, weight hovering between 89 and 90 kg and B.P. averaging around 142/82, although it did shoot up to 171/84 yesterday afternoon after spending the morning in town.
Anyway, I saw the Dr at Occy Health and he agreed for me to return to work when my current certificate runs out (end of May), although it will be on reduced hours, 2 days the first week, 3 the next, 4 the next and then back to full time. I'm not to do any nights (or overtime obviously) during this period of time and he'll see me at the end of June to see how things are going. And that was basically that. He dictated a letter to be sent, regarding his decision, which included that my condition would come under the Disability Discrimination Act. Not quite sure how that affects me with regard to potential redundancy and/or ill health retirement in the future but at least any further in patient treatment and changes in my condition should not be met with any difficulties when needing time off work, not that I would expect any problems anyway.

I've been having a go at charting my B.P., Weight etc on excel. It's not come out too badly. I also downloaded a program for charting Blood Pressure. It's shareware which means there are some restrictions on it unless you agree to pay about £20 for it. I'm still using the evaluation version and haven't decided whether to buy it or not. If interested you can find details about it here

http://www.my-blood-pressure.com/

There is another piece of software that has charts for a whole load of things including blood sugar monitoring. I haven't tried this yet but it looks promising.

http://www.blood-pressure-diabetes.com/health-monitor-software.html

Other News
1) Have heard nothing from the dieticians. I'm getting severely cheesed off about it, as trying to keep to my low-salt, low-fat diet is one thing that is causing me a fair bit of stress.
2) I'm getting to be a right moody bugger! I reckon it's a combination of not smoking and the steroids, and the family have suffered from me on more than one accasion over the last few days. Must watch my temper when I return to work!
3) Still got the headache. It's basically continuous and I'm popping at least 6 paracetamol a day
4) Sleeping slightly better. Managed 6 hours last night.
5) Must contact the secretary of the supporters' club tomorrow to find out what time I need to be at Stansted next Tuesday evening. Hard to think, this time next week, it will all be over. Just hope the Chelsea and Utd supporters behave better than the Rangers fans did in Manchester last night.

Well, to coin a phrase, That's all Folks!

A Good Day

2008-05-12T12:53:00.007+01:00

Although I am automatically getting up early every day, usually around 0500, at least this time I needed to as we had to go to Peterborough for Sumi's Highland Dance Comp. Originally I was going to go to Wigan to see Man Utd's last game of the season there where they would hopefully win the Premiership but, I had to forgo that to help pay for the Moscow trip.
Anyway it all worked out well, as there would have been difficulty getting someone to take her seeing as everyone else's cars were full that day.
I had my now usual headache, but not too severe, took my meds did my weight (89.1kg) and B.P. (142/87) and we left for Peterborough at 0630. We left early as we had got lost the year before. We got lost again this time as the street signs there are absolutely bloody useless but we still arrived in plenty of time. Sumi carried out all her 7 dances in what was a big group of ten 8 & 9 year olds. It was a bit of a mixed bag but she came away with a Bronze Medal for the 6 step Highland Fling, a dance she had completely cocked up at her previous comp, but danced really well this time. She was happy as were the rest of us, and with the exception of one of the dancers everybody who danced in the morning came away with something including a good collection of trophies.
Award ceremony over it was time to set off home and see the match. Utd won 2-0 and claimed their 10th Premiership in 15 years. Next stop Moscow.

Later on, we got an invite to a neighbour's bbq. I love bbq's, especially when there is a multi cultural aspect to them, which was certainly the case this time as 80% of the people there were from the Philipines. The food was fantastic and I'm sure that I consumed a lot of things that I shouldn't have e.g. Higher salt or saturated fat content. Anyway I was celebrating so thought it sensible to have a day off. Have to wait and see if that decision comes back and bites me on the arse!
Anyway, we all had a great time.

This morning I woke at 0500 (again!) and checked what damage I had done to myself. Headache still present, B.P.148/86, P 75, Weight 89.8 (Oops! Not good). B.p had dropped to 132/76 by 1300. Must keep better control

NewsFlash Just had a call from the surgery this afternoon, and finally my prescription is correct on their computer. Only taken a couple of weeks! At least I'll have a correct covering note for my tablets when I go to Moscow.

The course of true health never does run smooth

2008-05-09T21:18:00.003+01:00

After the fun and games of yesterday I was hoping for a much calmer time today although I did have a number of things to sort out.
Day started early as usual, 0515. Weight had gone up to 89.7kg and the headache was still present. Paracetamol taken immediately. After doing the school run, I went and had my blood taken for Renal and Bone Profiles. I then wrote a letter for the G.P. to accompany the request for the changes in my medication, and for a med certificate to carry me through to the end of the month.
As luck would have it, my G.P. wasn't in today, and so the receptionist said that she would pass the details onto the duty Dr. and for me to come back after 2pm. She did ask why the Renal Dept didn't dispence the new medication. I said that she should ask them as I was only acting as a messenger/delivery boy.
Following this I then went on a B.P. Monitor hunt. I secured one from Lloyds Pharmacy that I had seen advertised in the paper. I didn't know what the quality would be as it was so much cheaper than others I had seen, £9.99 compared to over £40. I also had a voucher for 10% off so ended up getting the monitor for £8.99 (4 X AA batteries not included). Used it as soon as I got home. Worked like a dream. Very impressed. B.P. 148/85. Still too high, but hopefully will come down when I commence the new drug regime. Renal dept want my B.P. down to no more than 125/70.
When I returned to the surgery the prescriptions and Med Cert had been done. and off I went to the chemist. Just prior to handing them over i noticed that the prednisolone had been written up as 50mg to be given as 10 X 5mg enteric coated tablets! I said to the pharmacist that this was not what had been requested by the pharmacist and I was taking enough tablets as it was without having to take 10 when 2 X 25 would suffice, The pharmacist phoned the surgery who informed that the only thing they had on computer was the original 60mg dose. They had the letter that I had written but not the Nephrologist's request, which was a bit strange seeing as I had stapled them together. The whole thing was completely confused because the Duty Dr had done everything requested (apart from the mix-up with the type of Predisolone wanted) and yet couldn't locate the paerwork. It was decided to fax the prescription to see if it could be changed but dispense the Amlodipine and Furosemide. I said that I had enough steroids to get me over the weekend. The amount of errors both minor and major that have been made through this whole process doesn't inspire confidence, but I'll keep plugging away. I'm just glad that I have enough knowledge to keep on top of things. Someone else could run into deep do-do if they were not careful.
Ah well here's to my steroids running out before I get the new lot!
It's 10pm and I've still got a mild headache by the way, even though I've had 8 paracetamol today. This new drug regime better bloody well work.

Show me the Prognosis!

2008-05-08T06:05:00.006+01:00

Well today's the day when I hope to get a better idea of how the next few years of my life are going to pan out. I feel I've been in limbo somewhat over the last couple of weeks, although a lot has been going on. Hopefully they'll have the final biopsy report and will let me know the likelihood of me going into renal failure and some sort of time span. All I want is openness and honesty. However bad the news may be, the last thing I want is to be taken round the houses and given a whole load of wishy washy info that leaves me just as in the dark as when I went in. As far as I am concerned what I want to know is just as important as what the Consultant wants to tell me. I see the process as a some sort of partnership and therefore it's best to get the ground rules set at the beginning.

My day has its usual start, waking early, briefly at 0400 and then finally at0530. I seem to be waking earlier every day. Carry on at this rate and I'll be getting up half an hour before I go to bed!
I've still got a headache. Whereas Monday it was just above my right eye, since then it has been above my left eye. Yesterday the pressure was so intense it was making my eye water. Definitely one thing to discuss with the Consultant. I think I'm going to buy a Blood Pressure Gauge at some point. One good thing, since I started taking multivitamins I've had no muscle spasms in my right hand. Could be coincidence but who knows.

Do my daily weight and it's 89.3kg for the third day running. Seems the scales have got stuck,

Anyway I need to start writing down the info I need. I hope I see the dietician as well today, as I still haven't received any dietary sheet and I'm getting fed up with the whole process of label reading and combining diets. Did invest in a book yesterday that claims to have recipies covering low salt and fat. Just waiting for it to be delivered.

It is now 1030 at night and what a bloody day I've had.

Half an hour before going for my appointment with the Consultant Nephrologist I get a phonecall confirming I'm on the flight for Moscow - Get in! All potential problems with visas and names on match tickets have been ironed out so all I've got to worry about now is paying for the thing. Minor irritation.

Anyway, back to the kidneys. Whilst having a shower this morning I noticed a stinging sensation on my right arm. At first I thought the water temperature had changed and that I had scolded myself but there wasn't any residual pain afterwards. Maybe it was a bit of sunburn from the day before? I'd mention it to the Doctor anyway.
I'd taken some paracetamol this morning but didn't intend to take anymore until after my appointment, so that if the headache returned I could explain it in detail. Whilst waiting in the lobby for my appointment my headache did return and with a vengeance.
I went through to see the Consultant, a Dr. I had not met before who asked me if I had recently had my blood tests. I said that the last blood that I had taken was when I was in hospital. Seems like this was another cock-up with my discharge as I should have had Renal Function tests done prior to this appointment. I did take a urine sample with me, which was required but had not been requested. I reckon I should claim half of the House Officer's salary seeing as I seem to have done most of her job!

I told the Consultant about the headaches, rash and muscle spasms. He noticed that I had a tremour in my right hand also. This was put down to the steroids and my blood pressure (which was 150/85). He was also concerned that the fluid retention in my legs and ankles was still quite excessive.
A number of alterations were made to my medication
Furosemide to be increased to 80mg per day from 40mg to reduce the fluid retention
Prednisolone reduced to 50mg per day from 60mg to help alleviate the suspected side effects
Prescribed Amlodipin 5mg per day to reduce my blood pressure, but also continue with the Irbesartan

I then asked about my condition and prognosis. basically the upshot of it all is this.
The FSGS appears to be of a non specific origin, which probably explains why my actual kidney function is unaffected at the moment, just the leakage of protein due to the damage to the glomeruli. What constitutes success in my treatment is a reduction in said leakage. The Consultant envisages me being on the steroids for at least 6 months (as opposed to the 3 I was originally quoted) and will have a better idea of progress then. From what was said it seems that Renal failure is probably inevitable although it may not happen for another 10 years, however if things take a turn for the worse (e.g. My blood pressure not settling down) then it could even be just 3 years. At least I now have some figures to work with even if they cover a long period of time. There was then a short discussion about my diet and the fact that I was still waiting to hear from the dieticians. It was agreed that a formal referal would be made but I might not get an appointment for at least 2 to 3 weeks. Finally a couple of blood forms were written up, one for tomorrow and one for a few days before my next appointment, May 29th 4.20pm. The Consultant advised me not to return to work until I had seen him again.
By this time the headache was getting particularly intense. I barely made it home, popped a couple of paracetamol and collapsed on the sofa. The headache intensified to the point of resembling a migraine and the pain was so great I was in tears. A phonecall was made to NHS Direct for advice, which proved to be a waste of time to be fair. 2 of the things advised were drink plenty of fluids and if the paracetamol wasn't working try Ibruprofen. This was said even though they had been told that I was diagnosed with Nephrotic Syndrome and those 2 courses of action are contraindicated. Good job I have a reasonable understanding of my condition even though I was barely compos mentis by this time. I took my self to bed, probably fell asleep about 7pm and woke at 9pm feeling better, but very weak. Took another couple of paracetamol, sent a couple of texts to update people on my condition and then wrote this,

All in all a memorable day, especially due to the fact that I now know i'm going to Moscow! I have to get my priorities right

Nurse, Heal Thyself!

2008-05-06T06:02:00.009+01:00

Tuesday 6th May
Wake up at 0500 (getting earlier), with yet another headache. Go and take some paracetamol and do my daily weight, 89.3kg. That's a bit better, down 0.2 from yesterday. Return to bed and have a think about my current health situation. Due to having a runny nose it could just be a cold. This would be understandable with the amount of bugs in the household at present and my suppressed immune system, but those contractures/spasms I was getting yesterday do focus the mind somewhat. Best go and see what Google says about Hypocalcaemia. Nice little link to wikipedia that seems to confirm my suspicions.

Hypocalcaemia

The following webpage shows the

link between Hypocalcaemia and Nephrotic Syndrome

"Measurements of 25-(OH) vitamin D (calcidiol) are more informative in most patients with hypocalcemia than measurements of 1,25-(OH) vitamin D (calcitriol). This is because vitamin D deficiency causes hypocalcemia and stimulates PTH secretion, which in turn stimulates renal conversion of calcidiol to calcitriol. Low dietary intake, poor absorption of vitamin D, and lack of production of calcidiol in the skin will result in a low serum cacidiol level. Calcidiol will be low also in patients taking phenytoin, those suffering from nephrotic syndrome (loss of vitamin D-binding protein), and patients with hepatobiliary disease."

The following article (somewhat technical) also mentions the link

http://jcem.endojournals.org/cgi/content/abstract/52/1/116

There is also a link between use of steroids and reduced vitamin D levels.

http://ibdcrohns.about.com/od/relatedconditions/a/fdavitd_3.htm

"Corticosteroid medications are often prescribed to reduce inflammation from a variety of medical problems. These medicines may be essential for a person’s medical treatment, but they have potential side effects, including decreased calcium absorption. There is some evidence that steroids may also impair vitamin D metabolism, further contributing to the loss of bone and development of osteoporosis associated with steroid medications. For these reasons, individuals on chronic steroid therapy should consult with their physician or registered dietitian about the need to increase vitamin D intake through diet and/or dietary supplements."

Looks like I'll have to get in touch with the renal department for advice. Just shows how things like this can move along so quickly. 2 months ago I was fine, now I'm a walking Medical Journal!

Well I contacted the Renal Unit but they didn't seem particularly impressed with my self diagnosis and suggested that I wait until I see the Consultant on Thursday. Fair enough, but I''m not entirely convinced.

Sod it! I like my theory, so I go and invest on a container of multivitamins and one of Cranberry tablets. Shouldn't do any harm (fingers crossed!)

May Bank Holiday

2008-05-05T06:10:00.009+01:00

Regardless of the fact that I didn't go to bed until after 1 am I still wake up around 0530. This appears to be due to a combination of insomnia induced by the steroids and the need for the toilet induced by the diuretics! What's different this morning though is I've got the headache from hell.
My wife hasn't been well for over 2 weeks (cold/flu type symptoms) and I assume I've picked up some kind of bug from her, or maybe from my son whose nose has been running since birth! Anyway I get up, take a couple of paracetamol in addition to my regular meds and do my daily weight. My weight id 89.5kg, up 0.6kg from yesterday. Bugger it, this is not a good start to the day. The fluid retention in my body, especially my feet doesn't look as bad as usual, so I assume the extra weight could be down to my excessive eating as a result of stopping smoking.
As the saying goes, for every action there is an equal and opposite reaction, and this morning I seem to have been bombarded with a whole load of reactions. When hit with some sort of adversity I tend to take a step back, have a look at the situation and its implications.
1) Headache could be due to a cold or increased blood pressure. See how things go, ring the out of hours medical service if no improvement.
2) Weight increase, try to cut down on the eating a little today and maybe I can head back towards 89kg for tomorrow.
3) Aim to achieve what I had planned to do today, finally get my daughter's bedroom painted, health permitting.
4) Watch the football this afternoon, and hope Chelsea get beat, thereby securing the Premiership title for Utd. Actually this should have been number 1) in the list. Maybe my health is starting to take on more significance. I'll have to look at rectifying that particular oversight
5) Make a new entry for the blog (and here it is), plus finish off one that I started at the weekend (I'll do that later)

Things start to look up. The headache is gone within 30 mins and I can relax somewhat, contermplating when I'm going to start painting my daughter's bedroom. Then another shock to the system. I get an email from the secretary of the supporters' club saying that there's a problem with my application for Moscow. He has been unable to get the money from my account and there are issues relating to the ticket and visa. He asks me to call him in the afternoon. This means I am now on the reserve list for Moscow. My guarantee for going to the game has been taken away! Does life get any worse than this?
I quickly get onto my bank to find out what's happened and basically the wrong security numbers have been given. At least the fault is with the supporters' club, not me or my bank but it does cause concern. No idea what the problem with the ticket or visa is though. Just have to wait until after noon to find out what the hell is going on. For someone who needs to keep his blood pressure under control this will sorely test that resolve!
Anyway, I speak to the secretary and explain what has gone wrong. We have a discussion about match tickets and visas, but things take a turn for the better when it's announced that supporters with match tickets can waive the need for a visa. Not sure how this now leaves me but it definitely seems an improvement over what was being discussed a couple of hours earlier.
I finish painting my daughter's bedroom and sit down to watch the Newcastle v Chelsea game, Newcastle in general and Owen in particular let me down and Chelsea run out realtively easy winners 2-0. All down to the last day then.
Whilst watching the game, I notice a couple of times my fingers stiffen up and I have to force some flexibility in them. Whether this is due to the reduced salt in my diet, reduced protein in my blood or something else I don't know but it's just another thing to keep in mind, especially after the headache this morning.
During a phone conversation with a friend I have further episodes of muscle spasms in my right hand. After the call I check out the internet and come up with a possible diagnosis, Hypocalcaemia. It seems this is common in blood that is protein deficient. Looks like I might have struck on something. As long as the situation doesn't deteriorate further I'll mention it to the Dr. on Thursday. I'm sure they'll be doing a load of blood tests anyway so they might as well check that also.
All in all an interesting day, with a number of aggrevations I could well have done without. Roll on some sort of normality tomorrow

Moscow, Can't Go, Will Go

2008-05-03T07:36:00.004+01:00

Tuesday April 29th 2008. Man Utd v Barcelona European Champions League Semi-Final. After a 0-0 draw in Spain the previous week (whilst I was still in hospital, but got parole so I could go home and watch it on Sky TV) Utd needed a win to take them through to the Final in Moscow, May 21st.
I had already pre-booked to go to the game with the East Anglia Branch of The Manchester Utd Supporters Club. I try to get to as many Utd European home games as I can, as they are midweek and it's generally easier getting a ticket because of a number of supporters who can't make the +450 mile round trip due to work commitments. As I do shift work it's easier to arrange. Having said that it still works out bloody expensive (about £100 a time, to cover coach fare, match ticket, programme and refreshments) so I still have to limit how many games I go to. Long gone are the times (pre mortgage, pre marriage, pre kids!) when I would be travelling all round the country watching my beloved team about 40 times a season. I struggle to make double figures nowadays. Added to that the time it takes, usually leave Essex about 11am and get back at around 0330 the next morning, you can probably appreciate what a complete obsessive I am about my football club. This emotional attachment was going to cause undue mental torture over the next 24 hours, which led to A decision that I could be called to task for in the next few months.
Anyway, I don't want to get ahead of myself, so back to the game in hand. I'd been looking forward to the match and discussing it with some of the other patients in hospital, a few of which said they'd look out for me on TV (some chance of finding a single face among 75000, but I did help them by saying I'd be in the lower stand of the Stretford End!). I had a few concerns about needing the toilet every 10 minutes due to the diurectics I was on but at least the coach would have a loo, as well as comfort issues relating to my bloated body (especially my stomach), but at the end of the day I was going to Old Trafford so physical health issues needed to take a back seat. As I may have mentioned previously, I'm not much of a worrier. I'm far more pragmatic and fatalistic than that so it came as a great surprise to my mum (who had been staying at ours to help look after the kids) hearing me on the phone to a friend saying how worried I was. She then heard the next sentence, "I don't know if we're going to beat Barcelona!" Even she now appreciates that in the competition between my health and football there will always be one winner.
Prior to going to the game I went round Tesco's to stock up on refreshments. I allowed myself double the time due to the amount of label reading I'm doing at the moment (but more about that in another post). Low salt/low saturated fat refreshments duely bought I caught the coach to Manchester. Following a generally uneventful trip up apart from the usual hold-up on the A14 between Cambridge and Huntingdon we got to Manchester about 5.30pm. I had consumed pretty well all of my stocks by then and was still hungry. Apart from the diet and fluid restrictions I was on, I had also stopped my 20 a day smoking habit on the morning of going into hospital. I was till getting the cravings and eating like there was no tomorrow. I certainly like to make life difficult for myself. I decided to get something to eat before meeting up with friends in the pub. I got myself a chicken burger, as this seemed the least of the worst options I could have, went to the pub, had half a pint, chatted to the others about my condition and the game ahead and then went onto the game.
The atmosphere in the ground was the best I have ever experienced at Old Trafford and that helped carry the team onto a 1-0 victory and a place in the Moscow Final. Generally I was fine throughout. It helped that the whole of The Stretford End stood through all of the game so I wasn't having to sit in a squashed position like usual. Old Trafford is a great ground but the seat and leg room is absolutely crap. It pains me to say it but they could learn a lesson from Arsenal and their new Emirates Ground!
On the way back to the coach I had a meat bagguette and then suffered with stomach and leg cramps all the way home. It was worth it as I had more important things to consider, the fact that I couldn't go to Moscow!
In the previous weeks leading up to the games there was wide coverage about the costs that would be incurred for supporters having to go to Russia for the Final. Loads of comments about how prices were being hiked and that basically us supporters were going to get screwed out of every last penny. This was best shown by the fact that our club secretary had already chartered an aircraft and arranged hotel accommodation prior to the semi finals being completed and not knowing what the final cost was going to be. Those of us that had shown interest had been asked to pay a returnable £200 deposit. I had calculated that the final cost would be between £700 and £800, a figure I couldn't really afford, but I had promised myself that after missing the Final in 1999 I would ensure that I would attend the next one that Utd won through to.
However, my world came crashing down when I heard the final figure was going to be in excess of £1000 and that didn't include the cost of the match ticket or visa! There was no way I could afford that and I resigned myself to the fact that I would go to Utd's last 2 league games (Home against West Ham and Away against Wigan) hopefully see them lift the Premiership Trophy and then watch the CL Final on the TV. I was bloody well cheesed off all the way home, even though Utd had won.
When all seems lost, I somehow find a solution to a problem. It might not be particularly sensible or practical but I can rationalise it and it is a solution after all. Moscow had now become one of those situations. I drew up a list of issues relating to why I had to go and why I couldn't go.

Why I had to go
I missed out in 1999
I might not be well enough to go the next time Utd reach a Final (I might even be dead and that would be particularly regrettable!)
To say "I was there"

Why I couldn't go
I can't afford it!

The list showed that it wasn't a problem at all as there was only one thing stopping me from going, money. A quick review of finances, costs of loans etc. and I came up with a solution. The bank was going to pay for my trip (plus I'd save money by not going to the league games) and I'd worry about paying it back, later. Hurrah, problem solved! All I had to do now was sell the story to my wife.
As usual my wife was very understanding as I threw loads of facts and figures at her about what it all meant to me and how we could still pay it back. Her biggest concern was the food in Russia and how salty it was going to be. I gave assurances, as best as I could, that I would be very careful regarding my diet and that I wouldn't drink too much (alcohol or any fluid for that matter). Agreement was reached

I'M GOING TO MOSCOW!

FSGS Day! (25/04/2008)

2008-04-29T07:31:00.008+01:00

Friday arrived and as I thought I probably wouldn't see any doctors until late morning at the earliest I strolled off for a leisurely shower. On return there were the three Doctors from the Renal team waiting to see me, Typical!

The Consultant sat down with me and informed me that the diagnosis was FSGS. He explained a bit about what it was, the treatment regime I was going to follow and specific things I needed to do, especially following a low salt diet. I was going to be seen in a couple of weeks, when hopefully the final report would be through and I would know the extent of the problem.

Now this threw me somewhat as I had only been given info about Minimal Change Disease, the crux of which seemed to imply that there would be a good chance of success with treatment by steroids. FSGS on the other hand, the Consultant was saying there was a less than 50% chance of success and I may have to move onto even stronger immunosuppressants.
Some bugger had moved the goalposts and I wasn't impressed. I couldn't wait to get home, access the internet, and find out all about my new diagnosis.

Here are some links (just click on the underlined words) to the info I was originally given about my condition

Nephrotic Syndrome

Minimal Change Disease

Kidney Biopsy

Treatment with immunosuppressents (concentrate mainly on the Steroid section)

and finally here's one that gives some info about FSGS

As luck would have it, the hospital had introduced a new discharge procedure that week , which was presenting a few problems to the doctors accessing it. This meant that instead of getting kicked out early afternoon, it was after 5pm that I finally went home. Some errors had been made including not giving me an additional Medical Certificate to cover the time to when I would need to go to Outpatients and not giving me enough steroids to last the same amount of time.
It was a Friday and therefore I would have to wait until Monday to sort these problems out. If they'd listened to me in the first place, this wouldn't have happened, but they know what they're doing because patients get discharged all the time! I work for the NHS and believe me, the things that are done the most seem to be the things that are cocked up the most. Discharging prople into the private sector is one thing I've personally had to deal with on a regular basis and it has inevitably eneded up being a right pain in the arse!(obviously) .

Anyway, nothing I could do about it until after the weekend, so my main focus was information gathering as soon as I got home. I walked home as I only live 10 mins from the hospital (will be handy should I go onto having dialysis). As soon as I got home, I switched on the pc, accessed Google, typed in FSGS and waited for the millions of pages giving me all the information I could ever need. There wasn't quite as many as I was expecting (164000) and the level of duplication was very high. Well I trawled through quite a few and reached a number of conclusions

1) I was/am ill but don't yet know quite how ill I am. The follow up appointment with the Consultant should hopefully give me more info as the Final Report from the biopsy should be through.
2) I've convinced myself that I will end up requiring dialysis and a transplant.
3) I will remain as positive as possible about my predicament, but won't get complacent about the gravity of the situation.
4) I will try to carry on living as normal a life as possible bearing in mind the restrictions that will be placed on me (My diet is proving to be a major cause of hassle for me at the moment. I'll write about that seperately). This included driving to Slough the day after I was discharged in order to take my daughter to a Highland Dance comp and going to Manchester the following week to see Utd beat Barcelona to get into the Champion's League Final in Moscow (see later post)
5) I was going to start this blog.
6) I was going to learn as much as I can about my condition and give myself the best chance of success in it's treatment. I just haven't yet clarified what constitutes success. Is it cure, stopping the progress, slowing the progress or some other derivative? Maybe these answers can be provided on May 8th when I have my outpatients' appointment.

Here's some links to some other websites I found interesting to read

A forum for those on Dialysis (or not far of it)

More info about FSGS

Types of FSGS

Somewhat heated discussion about Kidney Failure

The Last Couple of Months

2008-04-27T07:55:00.000+01:00

I thought it would be a good idea to go over the journey I've followed in recent months from being basically a healthy person to an individual who's facing up to the prospect of potential dialysis and transplantation. I don't know if this is the same for other people who have gone through this but generally people have similar stories to tell I would imagine.
Anyway, enough waffling. Let's create the scene and then get on with the poxy story.
I'll start off by saying that I'm a Learning Disabilities Staff Nurse. I qualified in 1989 and primarily have worked in long term residential units providing care for people with complex needs e.g. Severe Learning Disabilities and associated challenging behaviours / mental health disorders.
The reason I mention this is because it obviously gives me access to information and resources on a day to day basis that others wouldn't normally have. I believe this helped in getting my original diagnosis of "Nephrotic Syndrome" from my G.P. so quickly.

Approximately 6 weeks ago I noticed I was beginning to suffer from fluid retention, especially to my left foot. Although I like pork, I wasn't happy that my feet were beginning to look like pig's trotters! Also my stomach was starting to take on pregnancy proportions. One day my feet were particularly swollen and I decided to see the out of hours doctor as it was a weekend. I shouldn't really have bothered. He basically said that it was unlikely to be heart failure at my age and to keep on eye on things. If there was no improvement then contact my G.P. Thanks for that!

A few days later I had a word with one of my Dr. colleagues at work, about my condition and she said immediately that I should get my kidney and liver function checked out and looked somewhat concerned.

I was doing a couple of night shifts and decided to do a urine analysis on myself and was somewhat shocked at the results. It showed that I had excessive amounts of protein present and high levels of blood. Everything else was in normal range. I made an appointment to see my G.P., did another test to confirm the original results, and then went to see the G.P.
He listened to my story, took my B.P. (which was high, approx. 150/95) and blood and said that he suspected nephrotic syndrome. He asked me to come back 2 days later when I would then get the results of the blood tests. I duly returned to find out his initial diagnosis was accurate and that he was referring me to the renal team.
At this point I asked if my condition was unusual and he said that it was only the 3rd time he had come across it in 25 years of G.P. practice. Other health professionals that I have spoken to say that it is not that an uncommon condition. Going by the relatively sparse amount of information about it on the internet I think I'll side with my G.P.'s view at the moment.

When I received the results of my blood test, apart from it showing my protein levels were low (due to the amount of protein that was being excreted by my kidneys), my cholesterol levels were excessively high, 15.3! Cholesterol should be below 5. I subsequently had a fasting cholesterol done and that still came out at over 14! Just another side product of this condition that I have to contend with.

Following a big mix-up where I was admitted to hospital one day, discharged the next without even seeing someone from the renal team I finally went into hospital a couple of weeks later and the tests to find out what specifically was wrong with me commenced. The specialist I had seen the day before felt that I maybe suffereing from "Minimal Change Disease" and she handed over a number of things that she had printed from the Internet covering this, Renal Biopsy and some info relating to Steroids.

I was currently being prescribed a cocktail of drugs

Ramipril 5mg a day for high blood pressure. I subsequently came off this and started on Irbesarten due to the horrible dry cough I developed which is a side effect of Ramipril.

Atorvastatin 40mg a day to lower my cholesterol

Furosemide 40mg-80mg a day to help alleviate the fluid retention

After admission there was some changes to my drug regime. The Furosemide was going to be given to me Intravenously as there was a possible absorption problem of the drug due to my fluid retention.
I commenced on a high dosage of steroids, Prednisolone 60mg per day.
Because of the steroid therapy I was also prescribed Lansoprazole 30mg per day and Nystatin 1mg 4 times a day (plus mouthwash) to reduce the possibility of me picking up mouth and gut infections due to my immune system being suppressed.

Yep, drugs are like busses, wait for ages for one and then hordes of the buggers arrive!

Whilst in hospital I was subjected to virtually daily blood tests, my weight was monitored, as was my fluid input/output. Because I felt well I tried to do as much of my care for myself as possible, including my own fluid charts. This helped prevent me from going stir crazy. I also negotiated the occasional home leave, seeing as home was only 10 minutes walk away and I couldn't see the Man Utd v Barcelona game at the hospital! I always make sure I get my priorities right.

I was admitted to hospital Tuesday 15th April 2008 and as previously mentioned underwent various tests and investigations in the first week including an ultrasound of my kidneys which showed them to be somewhat enlarged, unsurprisingly.

The following Monday I went for my biopsy. There was a small amount of trepidation. I wasn't sure how painful the local anaesthetic jab would be, but it only stung a little and the whole process was a breeze, although it did take a while to get me in the right position for the procedure, by use of pillows, bending and stretching me. I ended up in a sort of contorted recovery position which was slightly uncomfortable but basically ok. I had one major concern prior to the procedure and that was the cough I had developed due to the Ramipril previously prescribed. I had visions of having a coughing fit right at the moment of the biopsy and losing half a kidney in the process! The Dr. reassured me that it would be fine, and he was true to his word. I coughed like hell before the procedure and immediately afterwards but not a thing during it. The power of positive thinking does work on occasions.
A couple of hours after the biopsy the anaesthetic wore off and it felt like mild bruising to the side of my ribcage. This was short acting though, so all in all the whole process was no problem. All I had to do now was wait for the preliminary results, which I would get on Friday 25th April 2008

Why I'm Here!

2008-04-27T07:28:00.001+01:00

Hello,
My name's Dave. I'm a 44 year old father of 2 monsters and 2 days ago I was diagnosed with a kidney condition called FSGS ( focal segmental glomerulosclerosis). I have a follow up appointment with the renal specialist in a couple of weeks where hopefully I'll find out a bit more about my prognosis.
I've decided to set up a blog for a number of reasons
1) I'm basically a positive sort of bloke and can cope with most things that are thrown at me with stupidity and humour. I think this will be a great help in the months and years ahead.
2) This is a way for me to keep in touch with family and friends about my condition
3) I spend ages on the pc so I might as well use it for something meaningful once in a while
4) I'd like the chance to liaise with others who have the same condition so we can share notes and support eachother about a condition that on initial inspection seems to be little known about.
5) I'm at the start of a magical mystery tour, with my condition, so I might as well complicate the issue by doing something else new and set up this blog.

I have no idea how this is going to develop or even if I'll have the stamina to keep it going but we'll see.

Should be fun

Dave