Dear Dr. Roach: I read your recent column on transplants and dialysis. Fifteen years ago, I found I had polycystic kidney disease and was recommended a transplant. My wife and I discovered that our blood types were incompatible (her B positive to my A positive). I had started dialysis, and she wanted to contribute to a transplant chain swap for me. She felt that it was a way she could help. But her adrenal gland had been removed due to Cushing syndrome in her 20s, leaving a scar on her left kidney and rendering her ineligible for the chain swap.
However, we were offered the chance of an ABO incompatible transplant. Our titers were 16:1, which shortened the prep for the transplant. My wife, Heidi, was happy that she could do this for me. We had the transplant in October 2009, and my native kidneys (37 pounds worth) were removed in 2015.
The surgeon, Dr. L, said my wife’s kidney started working while he was hooking it up to me. I was on dialysis for less than six months total. I lost my Heidi in June 2022, and recently I had my annual visit with Dr. L. My numbers are good, and she’s still taking good care of me. We may have been incompatible, but we were a pair!
D.B.
This is a very touching story, and I hope to help readers understand a few points. Autosomal dominant polycystic kidney disease (ADPKD) is a common genetic disease that leads to end-stage kidney disease in about half of those who have this condition. Transplantation is the preferred treatment for ADPKD.
Paired transplants and transplant chains are where two or more potential donors who aren’t compatible with their friend or family member donate their kidneys to a person they are compatible with. This way, multiple people can get living kidney donations, which are the best kind of transplants for the recipient. You can read more about these on the National Kidney Foundation website at tinyurl.com/KidneyDonorChain.
Since your wife couldn’t donate a kidney due to her surgery, another option was an incompatible transplant. We didn’t think this was possible before, but when a paired donation or chain swap is impossible, a blood-type-incompatible transplant can be considered.
As you’ve identified, preparation before the transplant includes removing as many antibodies as possible from the recipient (a process called plasmapheresis); giving treatment (rituximab) to reduce the amount of antibodies the recipient will make; immunosuppressive drugs; and intravenous immunoglobulin to replace the antibodies removed by plasmapheresis. Obviously, this requires great expertise, and a handful of transplant centers across the country perform these.
Native kidneys aren’t typically removed after a transplant; however, yours were enormous. (A normal kidney weighs somewhere near 250 grams, about half a pound.) In people with ADPKD, the cysts may keep growing after a transplant. These large kidneys can cause pain, press on the stomach, cause weight loss or reflux, and become infected or bleed, so sometimes they need to be removed.
I’m very sorry you lost your wife, but the fact that her kidney is still working inside you is an amazing and precious gift!
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected]
