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2/5/2016 Latest post:
A little piece of hope crumbled today. I am officially in the last and final stage of Chronic Kidney Disease. I learned yesterday that my kidneys continue to fail - declining from about 20% kidney function last July to just 13% kidney function today (January, 2016). Stage 5 is also known as End Stage Kidney Disease or ESKD. So, I am hanging onto my new normal life – that is, life without dialysis – by a thread.
Tomorrow, although I feel I have prepared myself for this, I am ...getting my veins mapped for a fistula in preparation for dialysis. I wish I could say tomorrow I'm going out for a wonderful lunch with friends and off to a charity event in the evening - what used to be my normal life. I am doing my best to stay healthy, in mind, body, and soul, but in all likelihood it looks like I have missed the window for a pre-dialysis transplant.
For the past year, I have been searching for a living donor match and hoping that I could avoid dialysis because studies show that a preemptive transplant (and never going on dialysis) leads to higher transplant success rates. In other words, the less time a patient is on dialysis, the better the transplant outcome. Studies also show that transplant patients generally live twice as long as those who stay on dialysis. My physicians were encouraging a preemptive transplant because I was relatively young, thin and free from diabetes. In other words, I was a really good candidate for transplant.
Dialysis is not a death-knell, but it is also not a cure for End Stage Renal Disease. Dialysis helps patients whose kidneys have failed stay alive until a donor match is found, but it is not the same, nor as efficient as having a normal kidney. Not to mention that the normal, everyday things in life will change for us. We won't be able to travel far or without finding a dialysis center close by, and it means a lot of time away from my family and my day spent at the center. Gosh, it's just not the normal I dreamed of for my family.
My hope is to find a living donor match within the next few months so that I will be on dialysis for only a short time. A bolder dream is to find a living donor match before I need to go on dialysis – God willing my kidneys hold on just a little longer.
I need to be strong! I have my two young sons and a husband who need me, and I will fight to be with them for as long as I can! Thank you for sharing my story and for helping me to find my perfect living donor match (O blood type).