I had a living donor kidney transplant in April 2019, and it changed my life for the better. The journey to that operating room would have tested the patience of a saint, and as anyone who knows me can tell you, I am not a saint.
People with kidney failure become eligible to register for a transplant once their kidney function drops below 20%. Just because your kidney function makes you eligible to register, though, doesn’t mean a transplant hospital has to take you. In fact, transplant centers have very broad control over which patients they accept, because kidney transplants are considered elective surgeries. (Yes, really — there are other treatment options for kidney failure, e.g., hemodialysis and peritoneal dialysis, so a transplant is a “treatment option.”)
Dialysis is only about as effective as a kidney running at 15% of normal function, it’s extremely expensive and it’s extremely hard on bodies.
When I was on dialysis, I had regular shots of a hormone to keep my body producing red blood cells. I took expensive speciality medications to keep the levels of calcium and phosphorus in my blood from building up and poisoning me. I took medications to keep my body from absorbing phosphorus and potassium in my food. I limited my fluid intake.
Most mornings, I woke up, threw up and then went to teach high school. Luckily for me, people with kidney failure are automatically eligible to sign up for Medicare no matter what age they are, so at least the expensive part was less of a worry.
Transplants require strict compliance with a regimen of anti-rejection drugs, but in general keep patients much healthier than dialysis and offer greatly improved lifestyles for the lifespan of the kidney (8-20 years, on average). That said, kidneys are in extremely short supply, so anyone trying to get listed to receive a kidney must pass medical, psychological, and even financialevaluations.
The logic behind these requirements checks out, because of course you don’t want a commodity as precious as a kidney to go to a patient who can’t take care of it properly. But, what if that patient can’t take care of a kidney because they are sick with something other than kidney disease?
Patients have to pass a barrage of cardiovascular tests, meet BMI requirements, and be screened and scanned multiple times to make sure they are healthy enough to give a transplanted kidney a good chance.
Again, this makes sense, unless you’re someone who got diagnosed with a hidden cancer during the screening process. You’ll become ineligible until you’ve gone through treatment and been in remission for a certain amount of time. (You know what really helps cancer patients improve? Working kidneys.)
I was lucky enough to get through all of this testing and get on the list at Oregon Health and Science University’s transplant center in Portland. I am lucky enough to live in the Pacific Northwest — we have the shortest wait times for organ transplants in the country.
I was even lucky enough to have a dozen folks who wanted to give me an organ from their bodies. OHSU was extremely picky and denied potential donors left and right. They want donors to have absolutely no risk factors to their kidneys, so friends of mine who had had gestational diabetes or been on medications that cause kidney damage were rejected out of hand.
My father ended up having a blood antigen that would make my body work extra hard to try to reject a kidney from him.
My sister-in-law went through months of invasive testing only to be told that her kidneys were too small for them to be comfortable with the idea of each of us using only one of them.
Finally, a long-time friend whom I had met in the Moms-to-Be swim class at the YMCA was approved to be my donor. After over a year of waiting, we suddenly had to prepare for major surgery that would keep both of us away from our homes and small children for weeks.
Since my donor’s parents and my parents-in-law lived in the greater Portland area, they agreed to act as support people and take care of us while we recovered. (Transplant patients are required to stay within a certain distance of the transplant center after surgery.)
We also had to figure out how to keep our households running and our children cared for during this time. In a time-honored tradition, we turned to grandmas. My mom and my donor’s mother-in-law flew in to keep our households together as our husbands had to head back to work well before we would return home.
All of this was disruptive and complicated. It was also the most perfect example of unconditional love I’ve ever experienced.
My donor chose to take a risk by giving me a kidney, and the people who love her supported her in that choice.
Her friends brought each of our families dinner once we finally got home. My in-laws postponed their retirement plans to make sure I was taken care of. My friends made us coordinating quilts.
The entire community came together to make sure I got the best treatment available. Best of all, the five children who were involved in this process will grow up understanding what it means to love one another.
Kidney patients lose their Medicare entitlement three years after a transplant, so they need to prove to the hospital actuaries that they have a good chance of being able to afford the expensive anti-rejection drugs after that three-year window is closed. I’ve known people who have been “temporarily suspended” from the process of getting listed because their cash reserves were too low.