my story

Category: kidneys

  • Kidneys in January 2019

    Kidneys in January 2019

    Its happened.  The long awaited drop below 15% has arrived this month when I find my kidney function is 14%.

    For a long time the magic number was 20% and I broke that barrier quite some time ago.  In fact at the time I smashed the 20% mark dialysis was expected within a year.  Since then and as a result of several convesations with different consultants I have found that dialysis may well not happen until I am below 10% or more like 8%.  The 15% mark is now about transplant.  I have been offered a kidney by my son, Anthony, who insists I have it, I dont think I’ll accept.  He has his life in front of him and may need a spare for better reasons than me.  His own children maybe.  

    So 15% needs to be broken 3 times in a row but then I’ll go on the transplant list.  Apparently there is an approx 18 month wait and some more tests, an operation, and a barrage of anti rejection drugs and I may get some life back.  In the meantime I am left with my symptoms which are itching and tiredness.  The tiredness has been markedly worse the last few months and is obviously explained by the drop.

    There may be reasons for 15%.  Firstly I generally have a lower result in January.  This recovers at my next text usually in May.  (So maybe 15 or 16 this year).  Secondly this result comes with a raised calcium level.  I have had other levels raised in the past – potassium being one, which I have managed with diet.  The elevated calcium could me modified by reducing one of the medications I take to supplement the activity of my parathyroid gland, which on reduced instruction from my reduced kidneys produces less calcium?  If I have the dose this may force my parathyroid to work harder and produce a more normal amount of calcium.  You can tell I dont quite understand that too well but something there is true!! In conclusion though reduced calcium (more activive parathyroid) plus seasonal bounceback may result in increased kidney function.  I have a retest in 3 weeks. so we’ll know more then. 

    Emotionally this has been tough.  I have rallied before. Done a lot of work around acceptance.  Thought about choices.  Thought about the previous paragraph stuff etc. but I cant help feeling I have done my best for 6+ years and now the final slope is in sight.  Who knows what next.  I have always thought my condition will ‘get me’ and I cant stave it off indefinitely but it was starting to feel like I was winning.  Maybe not.  Hey ho!

  • Kidney function

    Kidney function

    The decline in my kidney function has been tracked by blood tests since I was diagnosed in 2003.  At that time I had 75% of my kidneys left.  This was below normal for a man of my age.  Over the period between then and 2012 there was more or less a straight line decline towards 25%

    kidney functionThats just short of 6% per year.  The treatment was to keep my blood pressure low so it didn’t force too much IGA through my kidneys.  This was managed at Bradford first but their system was poor as they often didn’t get my blood results in time or were working on results 3 months old.  The blood pressure management was not rigorous.  2% drop per visit didn’t seem a big deal.

    More recently I have been managed by Calderdale via Leeds.  Blood tests were done just before each consultation and responses rapid.  My kidney function got to 25% and I stopped working at the end of June 2012.  I started the 5:2 diet in October of that year and also regular acupuncture.  My kidney function stabilised at around 20% (average of 19.6 over the last 12 results).

    I was originally scheduled to start dyalisis in October 2012, so I have nearly bought 4 years in time so far.

     

  • IGA Nephropathy

    That’s what Ive got.  Its quite common, and often goes undiagnosed.  I might well not have found out if I had not changed doctors and had a routine urine test.

    Its also called Berger’s Disease, and is contracted following throat or chest infections.  I may well have started following a streptococcal throat infection I have in early 2000 or 2001 (cant remember).  I was diagnosed in Feb 2002 following a biopsy.  I have been treated with increasing amounts of blood pressure medication since that time, initially at Bradford St Luke’s (where I was born!) but more recently locally.

    My medication is currently:

    Doxazosin (as Mesilate) 4 mg x 1per day
    Soduim BiCarbonate 500mg x 4 per day
    Lisinopril 20mg x4 per day
    Valsartan 160mg x 2 per day
    AlfaCalcidol 500ng x 1 per day
    Viazem XL 180mg x 1 per day