Late last Friday afternoon, I got The Letter. The one I’d been waiting for. The one that would tell me if the Multidisciplinary Renal Transplant Committee had approved me for transplant.
I read The Letter three times before I realized that it didn’t say what I was expecting. I was looking for those exact words: You have been approved. After all, I already knew the results of all my tests. I suppose there could have been a reason why they wouldn’t approve me, but it would have to have been something really weird.
What The Letter said, in part, was “…although you were deemed to be a suitable candidate for kidney transplantation, you are too early too list at this time.”
So…was I approved or not? I sent an email to my nephrologist.
It turns out that yes, I was approved. But I’m not sick enough to be listed with UNOS (the United Network for Organ Sharing) for a deceased donor kidney. Here’s why:
Kidney function is measured with the Glomerular Filtration Rate (GFR, sometimes abbreviated eGFR). The stages of kidney disease are determined by your GFR and your symptoms. If you have no symptoms (as determined by lab work), your GFR can get down to 60 without much cause for concern. The highest value for GFR is 130 (technically, it’s 130 mL/min/1.73m2). Most kids have GFR values around 110.
Because the kidneys have to deal with everything that goes into your body, your kidney function progressively decreases as you age. Throw in some form of kidney disease, and that progression moves along at a much faster rate. People with a GFR of 15-29 are considered to be Stage 4; those with a GFR less than 15 are Stage 5, which is also known as End Stage Renal Disease (ESRD). Dialysis is typically started somewhere between 15 and 20.
As of August 4 (the latest set of labs when the committee made its decision), my GFR was 22 (right in the middle of Stage 4). UNOS requires that a possible recipient either be on dialysis or have a GFR of under 20. (And as of September 1, when I had another set of labs, my GFR was 23. However, back in May, my GFR was 19.)
So, to recap:
- I’m not sick enough to go on UNOS for a deceased donor kidney. (The typical wait time for someone with my blood type is 4-6 years. I could have a long wait going this route.)
- I am sick enough to look for a live donor. As with anything, there are pros and cons if I go with a live donor. The pros include a slightly better success rate, surgery according to both our schedules, more immediate reaction following the surgery (that is, kidneys from living donors tend to start working right away), possibly no need to go on dialysis, and no waiting list. The cons include starting anti-rejection drugs sooner (the drugs are my least favorite part of this whole thing), the possibility of rejection, and starting the clock running on the new kidney too soon (transplanted kidneys average 15-25 years before the recipient needs another transplant).
On to the next step! (More on this soon.)