Getting on the Transplant List

Clearing out the inbox, I found this long post I had sent to friends last February. It gives an inside view of the process. Yes, I am still on the list.

Dear Friends,
I am writing to those who have expressed interest in my health to let you know where things stand for me. Yesterday I took the very last test for my application for the kidney transplant list at OSU. Chest x-rays, a simple test that had been overlooked till then. It went well, and was a good deal more pleasant than the three sticks required to take eleven (yes, 11) tubes of blood, the PAP test (at my age!), the adenosine stress test Monday that left me radiant – that is, full of gamma rays – and meant I couldn’t have any coffee for 24 hours. No coffee, that was the hardest part.

A couple of weeks ago, having completed most of what was required to begin applying (copious forms, complete medical history, letters from oncologist, family doctor, dentist . . . mammogram) Tom and I went through the all-day interview. This involved no lunch and no rest for the weary from watching scary videos, and undergoing very long interviews with social worker and nurse, and a short interview with The Transplant Surgeon.

“Do you smoke? How long did you smoke? When did you quit?” Every single person asked me those questions. Happily, over and over I told them I quit 20 years ago.

And now we wait. Monday the nurse assigned to me will present my file to the Big Guy, who already told me I looked like a good candidate. (I cried.) Wednesday the transplant committee meets to decide who gets a chance to play the roulette wheel of The List. (It won’t be a smoker, I suspect.)

It will be someone who is likely to live through the surgery, who is healthy and determined enough to “take the graft” (have a kidney attach and go to work). Who will continue taking the very expensive meds the whole rest of their life, despite side effects, even after Medicare stops paying. Someone they believe will be “compliant,” get their routine blood tests, take their vital signs every single day to catch a rejection syndrome early.

If all this sounds too difficult, it’s nothing compared to dialysis. I know from experience. And the thing is, with a successful transplant (about 90% are) not only do you live, say, six years longer, six years, but you feel like a human being. “Quality of life,” they call it. Just one working kidney is all you need to climb Mont Blanc. Once I am on OSU, it will be comparatively easy to get on the list at other hospitals, which increases my odds of getting a kidney. Meanwhile, I have a few days of freedom.

Getting on the list means you become maybe #250 of the type O blood kidney patients waiting in line. When “a kidney comes in” tissue matching starts with the first person in line. If you are “a good match,” you are called. You might just be the backup person, but you go to the hospital and get prepped, in case. The call could be next week or ten years. The average wait for a type O cadaveric kidney on this list is three years.

And to get it you have to answer the phone call. It starts there. That’s why I say I feel free tonight. For five more days I don’t have to carry a charged cellphone everywhere I go, and always answer, day or night, no matter where I am. I don’t have to be packed and able to get to OSU within about six hours. Heck, tonight I could fly to Paris, if my gamma rays didn’t set the machines off. Once I am on the list, no more European weekend junkets. Darn.

For five more days I’m not waiting, hoping, fearing. I can just sit here with my pretty low kidney function contemplating dialysis and sketch the cat’s ears. I am free from the all-consuming work of application, and free from the penalties of success. To tell you the truth, it feels close to bliss. Like that moment after you take the last exam, but before you graduate and actually start to work.

I’ll be in touch. My love to all of you who have asked and cared about this trip.
Jeanne