A True Story

Last week I wrote about My Sister’s Keeper, a novel and movie to be released this Friday, June 26. Today I also tell a story about the need for a kidney transplant, but today’s account is true.

The story I tell is not one of my patients; that would violate a number of rules. No, this tale belongs to someone I know through friends and relatives. If she wishes to claim this saga as her own, she may do so by commenting. I will not “out” her.

The girl entered this world 18 years ago into a loving family. She had hypoplastic left heart syndrome, a condition in which the part of the heart that pumps blood to the body is malformed and cannot do its job. The best therapy for this condition, at that time, was cardiac transplantation. On her first roll of the dice she got lucky. An appropriate infant donor was found, and her life continued.

She grew up like most children. Although she required medicines to keep her body from rejecting her heart, she walked and talked and acted like a normal kid. Unfortunately anti-rejection drugs can damage other organs. After a number of years her kidneys were failing. Once again the gods smiled on her, and her mother was able to give her a transplant.

With high school completed, she dreams of going to college this fall and living independent of her parents, and she has been accepted. Finances are tight, but the dream is still in sight. Except…

Except her tranplanted kidney, like most, is not going to last forever. When the damage became apparent, a work-up for a new kidney began. Unfortunately, she has developed antibodies to a number of histocompatibility loci: the things that the body recognizes as self or not-self. The more antibodies the body has formed, the better the match has to be. This girl now requires a virtually perfect match. No one in her extended family fits.

She has already defied the odds. She now faces dialysis and a long wait for a new kidney. She has relatives willing to donate; they hope that someone who is a match will be willing to make a swap (see page 1 article in May Issue here).

She still holds onto her dream of college away from home. It can be done on dialysis, and I suspect she will figure out a way to make it happen. Compromises may be necessary. But she still hopes for that magic kidney.

No Hollywood ending here. Not even a reality TV ending. Just an 18 year old girl with a dream for a new kidney and a normal life.

Every transplant center has similar stories to tell. Please consider being an organ donor after you die, or even before.

Click here for more information on being an organ donor.

Click here or on the logo for more information on the Alliance for Paired Donation.