I want to tell you about my health situation. Some of you know about it, some of you don’t: I have had to be put on kidney dialysis. At first this was very difficult for me to discuss because no one wants to admit that they are dependent on a machine.
This has been life changing. I spend three and a half hours a day, three times a week, at a medical center, with catheters in my arm carrying blood to a filtering (dialysis) machine. The rest of the day I am exhausted, mostly sleep, and am only able to do minimal tasks.
I have had to cut back on activities that I love, such as my charitable work and travel. Travel is challenging because dialysis needs to be pre-arranged at the destination months in advance. Medical records need to be transferred, I need last minute COVID and TB tests to prove I’m not infectious, and there’s the anxiety of showing up at an unknown facility and hoping they’ve correctly got me into their schedule, or otherwise I’m in deep trouble. An impulsive trip to visit friends in Florida or Kenny’s sister in St. Louis is impossible. A trip to Israel seems unimaginable.
Most painful for me, this has been a lifestyle change for Ken too. I depend on him to pick me up and take me home because I am too weak to drive. Ken is now the main cook in the family and does the shopping. Ken is incredibly good natured about this but I hate to be so dependent on him. This is not how he expected to spend his retirement.
So why do I write this letter now? Because there is a way for me to get the quality of my life back, feel better, and hopefully live longer. This can be done through a living kidney transplant donor. Living donation takes place when a living person donates an organ for transplantation to another person. I am looking for a kidney.
A kidney transplant from a living donor is my best option. I am on the wait list to receive a kidney from a deceased donor, but the average wait time is 5-10 years. Kidneys from living donors typically last twice as long as kidneys from deceased donors, because the donor has been selected for good health, because the surgery can be optimally planned, and the kidney is outside a living body for a much shorter period of time.
Unfortunately, Ken cannot be a donor because 15 years ago he lost a kidney due to a malignancy (he and Zeev climbed Mt. Kilimanjaro four months after the surgery).
Please know that the kidney no longer needs to be an exact match due to logistical sharing of kidneys. There is a Midwest kidney exchange program. Kidneys can be given by any age person. Potential donors are carefully screened to be sure they are in good health and the loss of one kidney will not affect their quality of life. The surgery is done laparoscopically, which makes it much easier, and usually the donor is discharged from the hospital the day after surgery.
If you are considering being a donor, you can complete a preliminary medical screening at https://www.nmlivingdonor.org, or you can call the Northwestern University Living Kidney Donor program at 312-695-0828 and ask for Kathy Garbacz, my transplant nurse coordinator. Each potential donor will be assigned to a donor advocate, whose sole responsibility is the well-being of the donor. Northwestern will keep your call confidential and will not notify me about any specific potential donor until the donor has passed a battery of medical and psychological tests.
Asking a family member, friend, workmate, or stranger to consider donating is difficult, but the gift of a kidney will give me a new lease on life.
There are other ways you can help. Ken and I are going to be putting on a marketing campaign to find someone who wants to be a living kidney transplant donor. Ken will be here to help me and be my champion. I am looking to my friends and family to also be my champions.
We will be starting a Facebook page, making up cards and sending out advertisements. We are not well versed on how to keep up a Facebook page or social media. If you have the time and expertise we could use some intensive tutoring. If you have any ideas or know someone who has had a transplant, send them our way.
I have had a good life and I feel grateful to God. I have a wonderful family and now I have a cute granddaughter. I’ve enjoyed the blessings of many friendships. I’ve had interesting jobs and we’ve traveled. I hope I can find a kidney donor, but if not, Ken and I are still happy and we will face the new challenges of our age together.
Honestly, we would love to hear from you. If you have any ideas or just want to give us moral support – that would feel good. It always helps to hear from friends and family.
Thank you for your love and friendship,
P.S. You’ll find below links to a two-page summary of living donation FAQs, plus a superb 27-minute video from Northwestern Medicine fully explaining the process.