This story was written by Elizabeth, two time kidney and liver recipient
Hello, I am a twice kidney (2004, 2021) and now liver (2021) transplant recipient. I am a year out from my most recent surgery and I am doing exceptionally well, working full time, travelling, and spending time with my family. What blessings I’ve received!
My thoughts today are about the connections we have with our family, friends and others such as co-workers, organizational colleagues, faith-based connections, and anyone else we’re associated with. As someone needing or having a transplant, there are three major times that you might want to connect with them personally: before, during, and after transplant.
Those of us who have been through the transplant process know how hard it is to reach out to these folks when you need a kidney. I like many of you was hesitant to just say to people, “I need a kidney, how about one of yours”. I’m kidding of course, but that’s how I felt and why I was so hesitant to even start the conversation myself. My strategy was to use an “informant” in each category and ask her or him to spread the word about my need. I wrote up a short blurb citing some of the numbers (number of people on waiting list, how many die each day, etc.) and then told a little about myself (Polycystic Kidney Disease, mother of two youngish kids, my work setting) and added contact information. You can get the “numbers” on the American Society of Transplantation website and you can get your family to help you write up a blurb about you. You can also ask someone else to be your point of contact so potential donors don’t have to talk to you personally as they’re exploring their options. Then you have these informants spread the word about you and your need in any format they like (email lists, Facebook, other social media sites). As many say, you never know where that donor might come from or when.
The second time you want to be thinking about “others” is particularly as you’re moving toward your transplant date. As an eternal optimist, heading to the first transplant I often said to my husband and children when they brought up my upcoming transplant, “Oh, don’t worry about it, I’ll be fine”. Little did I realize they were all worrying and fearing the worst, but were hesitant to bring it up because I was so positive throughout. It was only later that their stories of anxiety and stress came up and I felt so badly that I had been so cavalier about it. When I had my second transplant (last year 2021), I tried to be much more open to them all (as well as friends and colleagues), ask them about how they were feeling, and talk through their concerns. In retrospect, it was clear that opening up the lines of communication was a much healthier path for all of us.
The last opportunity to reach out to your community of support is with the needs that you might have during and after the transplant. For the first transplant, I had to have both kidneys removed four months before the transplant to be ready for the new one. I knew I and my family would need some help during my recovery, so I reached out with some specific needs in mind (transportation to dialysis, meals, picking up my kids at times, pharmacy runs, etc.). My friends then set up a “Driving Miss Betsy” chain to help me get back and forth to dialysis. They also set up a site (there are many online) for people to bring food and do small tasks (go to pharmacy, grocery store, pick up kids, etc.). These sites also encourage you to post messages to your supports about how you’re doing and provide them with updates (I couldn’t receive flowers because of the potential bacteria, so fruit or other treats were recommended). For all my surgeries, letting people know what my and my family’s need were was very helpful. My belief is that people want to help, they just often don’t know how to help, so tell them!
If you want to read more about the ideas I’ve shared, please see a new book I and a colleague (a donor, Carol Offen) have written, The Insider’s Guide to Living Kidney Donation: Everything You Need to Know If You Give (or Get) the Greatest Gift. In the book we share our stories and those of several others, provide information on the process of donation, list frequently asked questions and our responses, and added a list of detailed resources. The book can be purchased at Amazon or any bookstore.
Elizabeth Crais is a Professor at the University of North Carolina at Chapel Hill. She lives with her husband and son in Chapel Hill, NC.