by Tibbs » Wed May 14, 2014 10:05 pm
When I was first diagnosed with CKD I was told 'There's nothing you can do to make it better or worse'. Now that wasn't entirely true, as well-controlled Blood Pressure is important to maintaining kidney function. However, aside from that, there's really not much else you can do.
Part of it comes down to the type of disease you have. I have IgA Nephropathy, which turns my kidneys into scar tissue. No amount of eating right or exercise is going to turn scar tissue back into tubules and glomeruli.
I don't want to be a downer, but the short answer is, no, there're no magic bullets to fix renal failure.
Both transplant and dialysis are very very expensive treatments. If there were a cheaper way, the NHS would be using it.
A big part of my being able to maintain a positive attitude is accepting that kidney failure has happened, it's not my fault and I can't do anything about it. All I can do is make the best of the situation, take my tablets religiously and do all that I can to protect my transplant.
I realise that hitting stage 5 and going through the transplant / dialysis prep is very daunting and very upsetting. Like you I hoped against hope that something would happen, that they'd suddenly find a cure or that they would realise that I was misdiagnosed all those years ago and that it was all a big mistake. Neither of those things happened.
In terms of things that I have seen tried are immuno-suppresants for IgA sufferers (I was on those) though the jury is undecided on their effectiveness, and taking lots of fish oil tablets, with the same inconclusive results. These may be worth investigating with your doctor.
Whilst having kidney failure is part of your life, it shouldn't be your life. A transplant has made me feel better than I have in the past 5 years at least, and I met an inspirational man who had been on dialysis for 30 years, had a wife and child and a full life.
Anyway you probably didn't want this dissertation, but I hope it helps, even just a little.
/edit
I've just read your posts on the welcome page - It may not seem so, but things are rarely as bad as they seem. Whilst I dodged dialysis, lots of people here have gone through what you have an will be able to guide you on your way whatever your decision. There are people on here who have experience of declining treatment (though maybe not directly). You won't find judgement here whatever your decision. We know first hand just how tough this kidney business is, and a lot of people who are in your situation react exactly as you do. Most people decide to try dialysis, and find out that it is manageable and it can be part of a lived life.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life