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Friday, February 26, 2016

Pushing Towards Kidney Transplant

Borrowed from my CaringBridge Journal

I'm sure a while back I read something my wife wrote about waiting. Cancer is a lot of waiting. Waiting for appointments, waiting at appointments. Waiting for results of tests, some of which can swing your life's course. I wrote about this myself recently in a blog post. Kidney failure is also a lot about its own waiting.

If you read that blog post, you'll know we recently waited on a very important bone marrow biopsy test result. If you haven't read it, please do, but the short version is: it was negative. As in good, clear, nothing. This was again the MRD test, same kind as I had about a year ago, which counts individual diseased cells out of millions of cells in your bone marrow sample. None found. No test is 100%, but this particular test is about as good as it gets, and we'll take it!

We have, over the past several months, been pressing the nephrologists (kidney docs) and the oncologists (cancer docs) to refer me to a local kidney transplant program, either at Duke or UNC Hospitals. Three of my main docs, Dr Christina Gasperetto (Duke Bone Marrow), Dr Pete Voorhees (UNC Cancer Hospital), and Dr Jason Eckel (Capital Nephrology) were crucial in helping push this along. I like my doctors, but out of all Pete is "my guy". He's the one you want looking after you. In the end, we went with Duke's transplant team, not because we didn't like UNC, but because Duke is known for taking on complicated cases. It didn't hurt that my kidney doc knows the head of the transplant program at Duke, and they had discussed my case. He said, sure, write the referral.

Anyway, the referral was written, then came more waiting. Some weeks later I had a feeling one particular day that something good was about to happen. It didn't. But the next day it did: they called me in. So on Dec 4 2014 we went in. We saw many people that day, learned a lot about transplants, getting on transplant lists, donations, recovering, post-transplant drugs, etc. There are many sub-professions interested in you, and how well suited you are for transplant from their perspective. These perspectives are: financial, support-system (social), nutrition, physical health (surgery), nephrology, and the overall risk/quality-of-life. They want a lot of test results, CT scans, heart stress tests, all of which we did.

We're pretty sure we got high marks in all these categories. Except: the Multiple Myeloma is a black mark, the ultimate variable. This is what makes the case so unusual. Few MM patients receive kidneys, although it has been done. Even fewer high-risk MM patients, like me, have had it done. Credit my wife for finding an article arguing more MM patients should get them (we cited it more than once this past year). A year ago I wasn't ready to even entertain kidney transplant, and now here we are. Kidney transplant is no picnic, but it sure has to beat being on dialysis.

We left Duke Dec 4, and didn't hear anything. We knew they were mulling it over; we knew the MM was the variable. We waited and waited, patiently. Well, finally after two months the call came: we'll put you on the list. That is, IF your bone marrow is again MRD negative. Read it now if you haven't yet. Scheduling the test, doing the test, waiting for the results: waiting is the hardest part. It's crushing sometimes, especially in cases like this.

Good things come to those who wait, right? Well, we've done our share of waiting. Finally we got the news just the other day: You're On The List. But wait. You're going to be "inactive" until we do another CT scan to follow up on a little something we saw on your CT scan from last September. We can schedule it in April; it should be fine, but we need to be sure.

So, we're waiting again. Seems like we're always waiting to wait, even with the flurry of activities (and real life) in the in-between. Assuming this scan is clear, there's more waiting, the next real waiting: a donor has to be found. Donors can be deceased or living. Outcomes from living donors are best and the wait times are much shorter. You can wait many years for a 'cadaver kidney'. Waiting for a cadaver kidney is tricky, I think. Main reason: someone has to die. But the fact is people do die. Many die while waiting for organ transplants. One real issue is that so few people are organ donors. Please consider becoming one if you aren't already.

I wrote in another blog post recently about the notion of seeking a living donor. How can you even ask someone for a kidney? It's a big ask with two major surgeries and life-changing impact. I take it very seriously, partly because I've already had one of my own kidneys surgically removed: I know something about that. Mine, however, did not benefit anyone.

One of the moments that's forever seared into my heart and mind from 18 months ago is my then-10-year-old son telling me he'd give me a kidney if I needed one.

I am not comfortable asking people to consider kidney donation on my behalf. How could anyone be comfortable? Time and dependence on dialysis have a way of changing your outlook. I ask because ostensibly I have little choice but to ask. It is a life-changer not just for me, but also for my family. I ask sincerely, and with full faithful, prayerful consideration of what my potential donors are deliberating, and what my ultimate donor is giving, and what they're giving up.

Even if my potential donor isn’t a match for me, they might be a match for someone else whose donor is a match for me. Such arrangements can be made. My currently being 'inactive' on the transplant list is not a hold-up for living donors to be evaluated.

Living donors generally need to

  • Be at least 18 years old

  • Be free of high blood pressure, diabetes

  • Not have been treated for or diagnosed with kidney stones

  • Have a support (social) system

My insurance will pay for the surgeries and donor evaluation expenses.

How to donate or get more information? Call the Duke Transplant Center: 919-613-7777

I've had a few people tell me they'd like to be considered, and it's a humbling experience. God said he is written on our hearts, and this is proof enough for me.

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