Autumn is here, and along with the leaves falling, news is dropping.
This summer I was told by Duke that I had three individuals who were matches for me. All the folks agreed to wait until my renal function was bad enough to warrant the transplant and prevent me from going on dialysis. It made my summer a bit brighter and a bit easier.
Defining adequately ‘bad’ renal function is challenging as it’s driven by numbers and symptoms, and the symptoms are rather non-specific, including fatigue and being cold. The goal is to identify the fact that my kidneys are failing and hope that 1) I can identify a donor in that window between identifying renal dysfunction and renal failure and 2) that I can stay renally stable for as long as possible.
I have been stable. However, I’m on a tenuous path, and unbeknownst to me, the renal transplant folks decided to re-evaluate my identified donors. Upon this closer examination, they found that there are reactive antibodies between all three donors and me; in short, my matches were deemed not matches. This is a massive disappointment and leaves me without an identified kidney while having renal function inching toward failure.
As you know, my question is always ‘ok, so what’s the strategy here?’
I’m waiting to get more information from the Duke Renal Transplant team to determine a parallel path for living donor evaluation, being listed for a kidney on the national list, and entering the paired donor pool.
I have officially been activated in the paired donor pool. This allow folks who get evaluated for me to enter into a pool in which if I match someone in the donor pool (someone else’s donor that did not match their person) to match someone else. This is entirely up to the donor to do, and I’m happy to answer any questions about this process
Please ramp up the social media machine again and continue to share my website and request for a kidney. https://www.nckidney.com/how-to-help
Getting an organ that matches is a numbers game. The more folks who get evaluated, the more likely a match is found.
I’ll keep you all updated as I learn more. With your support and sharing, I remain hopeful. I know we have to do this together, and I appreciate you running this very strange race with me.
Let’s finish strong and find a kidney.
With all my heart and kidneys, thank you.
Love, carolyn
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