“The Letter” arrived…

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.)

7 Comments

  1. Ouch!

    Being “not sick enough” would be tough to handle, and the same goes for wondering when a transplant might be best performed.

    I’m sure you’ll handle it with typical CharJTF aplomb.

    -Matt

  2. LOL Thanks, Matt :-) The last several months have been interesting, to say the least…

  3. This is the most confusing case of good news/bad news. I’m glad you’re not “sick enough” but it sure would have been tidier to hear “You are approved.”

    Does this mean you’ll have to go through all those tests again if just the GFR changes? That would suck.

    Well, in any case, I’m happy to hear that you are well-er than you were in May!
    you were in May!

  4. Thanks, Sarah :-) Yeah, I didn’t realize how much I was hoping for “You’re approved” until I didn’t get it.

    I don’t have to go through the tests again until next August, and that’s only if I haven’t had the surgery by then. These results are good for a year. (Well, except for my labs, which get done every month.)

  5. At least there wasn’t a clear “You were not approved” line. Very odd how they arbitrarily decide on timing and approval based solely on a test number. Puts a lot of faith into the accuracy of the test and the consistency of the health level, doesn’t it?

    At any rate, good to hear you weren’t flat out denied, and sorry to hear that you still have some unknowns to contend with and decisions to make regarding the transplant. :-/

  6. It’s really not arbitrary…people can function with a GFR of 20 (as I’m proving!).

    BTW, the GFR is an accurate test of kidney function. (And thank heavens for that…I had a test about 10 years ago that required that I only have water from midnight on, and then I spent 7 hours the next day at the lab getting blood drawn and peeing in a cup every hour so that they could analyze my kidney function. Getting one blood test done is so much easier!)

    I must not have explained it well…I was only denied from being put on UNOS. I can proceed with a transplant if I find a live donor. And I will go on the UNOS list as soon as my GFR goes under 20 (and stays there…mine tends to fluctuate, but the low range gets lower every couple of months. It used to take six months or longer for the low range to drop.).

    With 112,000 candidates on UNOS (almost 90,000 just for a kidney), they have to come up with a value for the cut-off.

  7. Thanks for the detailed explanation. You know you have cheerleaders around the world cheering you on loudly! Denmark has an ongoing campaign just to raise awareness of the need for organ donations: http://tagstilling.nu/ The title is literally “take a stand”. Make the decision now about organ donation – don’t let the family struggle with the decision when you can’t. Denmark seems to have a very low level of donation compared to other countries. Cremation is far more common than burial, so to be brutally frank – why should people be concerned about having the body complete at burial. Why not let useful organs continue to give life to someone else? That seems like such a beautiful thought, but it’s apparently too emotional an issue for some to consider. Another area where good communication and probably storytelling is in its place.

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