Writing this essay is an exercise in gratitude. My kidneys failed 12 years ago so I have had all types of challenges. I know it lifts my spirits to appreciate others.
There are many stories that I could tell. The nephrologist who soldiered on after losing his daughter to kidney disease. The 20-year veteran dialysis technician whose wit kept everyone laughing. The social worker who recommended me to a great therapist. The transplant team who offered me a kidney only after I provided my angiogram records. I seemed to have missed that detail and when they did one, my widow-maker artery was 90 percent blocked. It saved my life, of course. So perhaps you can understand why I say it takes a medical village.
Today, I am choosing to celebrate Dr. Pesenson, a nephrologist in Seattle. In Washington at that time, UNOS statistics showed that 95 percent of patients receive a transplant in less than four years. I was in year three on the wait list for my second transplant. The wait time in California averaged nine years. I have family in the area, so I went to Seattle to be dual listed there.
I live in California with my wife and two boys. My boys were 14 and 10 at the time. My oldest has a learning disability and at that time, he needed extra attention in school. My wife was getting her master’s degree and working as a therapist intern. What was I thinking, leaving them?
“So, I have three years on the wait list. I’ll be there for a few weeks to get a work-up, get a transplant, and then I can go back to my family.” It seemed better than the odds in California.
I established care with Dr. Pesenson in December 2017, and she made an immediate difference. In our first visit, she looked at my records and asked me why I was taking an anti-depressant. She suggested that I increase my run time for dialysis to four hours. Since I had some time on my hands, why not? Poof! I felt better within a week, including less cramping and more energy.
Unfortunately, my listing was delayed. I flew home for my youngest’s birthday in February. I went back immediately because I wasn’t officially listed at that time. I checked with the case worker as often as I dared. (Rule One of getting a transplant is: Don’t anger the transplant team.)
In March, I literally broke down in tears on my next visit to Dr. Pesenson. The transplant center had done all the tests except the psych evaluation. “I don’t know why there is a delay, but I am going home. If I have to come back, I will. But I am going home.” I simply could not wait anymore. I was doing video calls with my family, but it wasn’t the same.
Dr. Pesenson listened. After a few minutes, she picked up the phone. She knew the transplant staff and talked with them for a few minutes. When she hung up, she said that the transplant team would have the psychologist do the screening by phone and I was free to return to California. There are no words that adequately express how I felt. I choked up again, thanked her in a feeble voice and stumbled out of the office to book my flight. I received my kidney in July.
There are so many people outside of the medical field that have given me hope by their actions. One was Sarah, a 20-year friend who died with grace from kidney disease. I had two friends consider becoming a living donor for my first transplant; nothing could be nobler. I have known fellow patients who work manual jobs after dialysis sessions. Of course, my wife inspires me in so many ways.
When I donated blood in my 20s, there was a poem on the wall similar to this one from Emily Dickinson:
“Hope is the thing with feathers
That perches in the soul,
And sings the tune—without words,
And never stops at all …”
When I had my first transplant, I thought I was superman again. However, I have learned that no one is a hero by themselves. We all need people, kidney disease or not. My advocacy is part of providing hope to myself. Here’s hoping that you find that thing that inspires and perches in your soul to never stop singing.
Stephen Weed is a 65 year old two-time kidney transplant recipient. His second transplant occurred in July 2018 at Swedish Hospital in Seattle. He receives care currently through UCLA’s post-transplant program. He lives in Ventura County, CA with his wife Bonnie, their sons Gabriel and Jeremy and two cats. He prides himself in laughing often and mentoring his sons. He also spends his time remodeling their home, reading, and advocating with RSN and One Legacy.
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