It must be fate - Phosphate

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)

or

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.

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!

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

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!)

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!

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

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