Welcome, its always helpful to read stories from people who have lived productive lives with kidney failure for years. Looking back how what do you think of your decisions to be on dialysis for 12 years prior to transplantation? (i.e. would you tell you younger self to do something different?)
Quote from: iolaire on March 31, 2016, 05:26:01 AMWelcome, its always helpful to read stories from people who have lived productive lives with kidney failure for years. Looking back how what do you think of your decisions to be on dialysis for 12 years prior to transplantation? (i.e. would you tell you younger self to do something different?)Nope, I wouldn't do anything different. Times were different than today, especially with the sophistication of transplant meds. In fact, if not for having constant access issues after year 9, I would have stayed on hemo another 5 years or so. Hemodialysis was/is predictable and I knew how to take care of myself to do well on the modality. Transplantation, on the other hand, was truly a crap shoot in those days with imuran and prednisone the only immuno/antirejection meds available, keeping cadaver success rates around 50% for 3 years. Cyclosporine was added to the cocktail in the early 1980's, greatly improving success rates, but I wanted to wait until at least 10 years of experience with the med and "getting the kinks out" on dosing levels. That regimen worked well for me for 13+ years.While the current transplant meds are fairly toxic, success rates are in the 95%+ range for 5 years for both cadaver and living related donors. And yes, I would encourage twenty-somethings to look at transplantation as a first modality of treatment. Mainly because the dialysis industrial complex has made it extremely challenging to get good treatment - even if doing it at home.
You might want to ask you neph if adding a Lixelle column to the setup could help your DRA.
My kidney failure a result of bladder reflux not being corrected until I was twelve. By then, over 50% of my function was destroyed. At 19 had ureter re-implants with the hope of slowing progression. Began incenter hemo at the age of 22 in 1978. Stayed on that modality, by choice, until receiving a cadaver transplant in 1990. After a rough first 2 months, I had 13.5 great years with the transplant until going into rejection. Started back on hemo on what would have been the 14th anniversary of my transplant. Relisted in 2005, but with type B blood and a 99% PRA, I knew it would be a long wait for another decent cadaver match. Because of physical challenges related to 25+ years of renal failure and dialysis, I decided to double list to a local transplant program about 2 months ago. The director of kidney and pancreas transplant medicine is my former nephrologist of 7 years who I greatly respect. Have a urology consult left in the evaluation process and hope to be approved sometime in May. I've been on extended hours incenter hemo for the past six five years and continue to work (self-employed since 1993). Yet, dealing with neuropathy in both hands, systemic disease-related pruritus (not from high phos level, mine runs between 2.5-4.0) and amyloidosis in my neck have made living a good life quite the challenge. However, I celebrated my 60th B'day a few months ago with a group of great friends and feel fortunate to still be around.That's me - SutureSelf
The nephrologist who rounds in her place told me that if they did use the Lixelle, those patients would not get high flux dialyzers since the device would compensate for the better clearances.