So, since this whole thing has begun, the question that I've been asked over and over again is "How long is the wait?" This can be a very frustrating and anxiety ridden stage of the transplant process, especially for people who are very sick. I am one of the lucky ones (yeah ...me...lucky....right?), I have surrounded myself with doctors and healthcare professionals that, through my research and investigation, I believe are some of the best. These people have been evaluating me for some time now and in seeing the type of activities I enjoy, and the sort of life I live, have taken a bit of a proactive stance on the need for a transplant. Rather than the reactive approach of waiting until I am real sick, need dialysis, etc. So the waiting time for me right now, while still rife with anxiety and a lot of sleepless nights, is nowhere near as bad as it is for someone who is currently extremely ill and on dialysis 3 times a week.
My Transplant Coordinator at Pinnacle, Rebecca Brown, B.S.N., R.N., C.C.T.C. wrote a great article in the latest newsletter from the transplant center explaining the wait process which I will share here over several posts. (I am still apologizing for the epic, chapter length of the last post but I had to get that off my chest.)
So, how does the transplant list work? The United Network for Organ Sharing (UNOS), is responsible for the sharing of organs nationwide. They have established criteria for placement on the transplant list. When a patient has completed transplant evaluation and has been approved for transplant, their medical information is entered into the UNOS database. This medical information includes the recipient's blood type, HLA (genetic markers), the date they started dialysis or other laboratory data. Per UNOS regulations, you cannot accumulate any waiting time until your GFR (glomerular filtration rate / kidney function) is 20 ml/min or less.
As mentioned in a previous post, with the help of some new meds, dietary changes, and staying hydrated, my latest GFR had rebounded to 22 ml/min but at one point had been as low as 16 ml/min. So, because I have been below 20 at one time, I am currently accruing wait time credits.
That's enough for today but tune in to the next post to see more on The Waiting.
