Living Kidney Donor Potpourri Psychosocial Risks

Being a Living Donor – Nine Months Later

I’ve tried to be respectful of my sister Mary’s privacy (and that of her family) since none of them really asked to be dragged into my little corner of cyberspace. When I naively believed everyone would get their ‘happily ever after’, this was easy. But since the really-real world intruded upon my tidy plans, I’ve had to make some major adjustments, and this is one of them.

Two weeks ago I had laparscopic surgery to remove endometriosis that I didn’t even know I had. Twenty years ago, Mary had a case so severe it necessitated two major surgeries before she was healthy enough to carry and give birth to my two beautiful neices. The diagnosis, on that level, wasn’t a huge surprise, but the fact no one detected it until this point of my life certainly was.

I was overwhelmed by the possibility of enduring another surgery less than a year after the transplant. Alone in the doctor’s office and caught completely unaware, I started blubbering – a complete overreaction – but I couldn’t seem to stem the tide of tears. How I mananged to drive home is a mystery.

(Do I even need to say that Mary was the first person I called after I made myself some hot lemon tea and settled down enough to speak?)

This minor procedure provoked a PTSD-ish episode for me. While my physical recovery from the donation was probably as smooth as one could hope for, it was far from easy. And more so, because I spent a week receiving good and bad prognoses for Mary (sometimes within hours of each other), I could never relax and allow myself to heal. I was on full alert all the time, even in my dreams. When the transplant finally did fail, the full implications of my sacrifice (think amputee), my failure to help my sister, and the knowledge that she was still sick, made me sludgey in a way that no medication ever could.

The prospect of another bout of anesthesia and another doctor poking me with sharp implements, especially through my already beleaguered navel, dropped me right back into the boiling, fetid vat of it. Nine months of concerned effort to get myself back went right out the mother-fucking window.

Two days before the surgery, by coincidence, I discovered my sister’s doctor, looking at the results of her latest blood work, said, “You are much sicker than you look or feel”. I say ‘by coincidence’ because Mary is the type of person who would’ve kept this information from me until I was healthy again (if she’d had the power) but the family grapevine thwarts all good plans of privacy.

Mary’s kidney function is less than 10% of normal.

Mary is blood type O, which means she must have a kidney from a type O donor. The catch is that a type O donor can donate to any blood type so there is no possibility of a paired donation or kidney chain – not for Mary.

(FYI, My other two siblings can’t donate due to non-life threatening health-related reasons, my father is not eligible, and my brother-in-law is the wrong blood type.)

I thought I was coping with this information as well as possible until my dentist, last week, said, “Your dad and I had a talk about you.” (It’s a long story, but yes, we see the same dentist, and have since I was eight years old). I cried, and everything my dentist said to me in an attempt to assuage my feelings or give me consolation was answered with “It doesn’t matter.” What I feel, what I believe, what I know or don’t know – none of it matters, because the end result is the same.

My sister Mary is dying and there’s absolutely nothing I can do about it.

And that’s something they’ll never put in the brochure.

3 replies on “Being a Living Donor – Nine Months Later”

It is so very hard to find appropriate words to respond to such a naked post. Other than to say that I wish I was an O, and that I am thinking of you and your family.

I know it won’t help much, because the worry you have for your sister is real and intense and understandable. But I want to let you know, I have 2 friends who are beacons of hope for me – 1 has been on dialysis for 11 years and the other for 27 years. They both are working, self-sufficient and enjoying as much of life as is possible. That being said, I still pray your sister finds another donor. Best wishes to you as you recover from this surgery, and thank you for being a donor – LIVING DONORS are very special people!

I have no words to offer but I do hope that maybe your sister will find a donor. I also hope that you can find a way to heal.

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