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Dianne-Kidney Recipient


I was diagnosed with hypertension in my early 20’s, over 30 years ago. I also was a runner and took ibuprofen and other NSAIDS over the years. In addition to running pain, I had headaches for several years due to a benign brain tumor called a colloid cyst, another condition for which I took more NSAIDS. The tumor was removed in 1996, the same year I married my husband who came with two beautiful bonus daughters.

Over the years, my doctor watched my creatinine creep from 1.3 to 1.6 to 1.8 and then level off for several years at 1.9 to 2.0. Then in 2012 and 2013 my creatinine began fluctuating. In the fall of 2013 my doctor told me I needed to see a nephrologist. I was simultaneously writing my dissertation for a PhD in Engineering Project Management. We held off for six months so I could finish my dissertation.

In June 2014 I saw a nephrologist who said, “Let’s see if we can keep you off dialysis.” I was in Stage 4 Chronic Kidney Disease, and rapidly heading to Stage 5. I began researching kidney disease, including obtaining kidney diets and kidney foods from the nephrologist’s office. We were able to slow the progression through diet and medication – lots of medication. The kidney biopsy in July showed the damage due to NSAID use and hypertension. My physical condition continued to deteriorate. The doctors asked which type of dialysis I wanted. Like most kidney patients I wanted to avoid dialysis. Dialysis is a hard way to live. So I said, none, thank you very much. I’m terrified of needles, so my biggest fear was the thought of a dialysis system inserted somewhere in my body.  I pressed on trying to manage kidney disease without dialysis.

Kidney disease caused me to gain weight; swell everywhere; breathing was difficult; walking was difficult. I was able to continue working through this period, and I successfully defended my dissertation, earning my PhD in October 2014. In summer of 2015 the nephrologist referred me for transplant. We met the transplant team at the University of Cincinnati in September. I was in a hurry to avoid dialysis, so I completed all the necessary testing in a few weeks, and was listed on the national kidney transplant list on October 21, 2015.
One of my bonus daughters, Christina, was tested during the fall of 2015 to try to see whether she could donate a kidney to me. She was not a match for me because I have high antibodies. The transplant team explained I would be a potential match for about 24% of the population, and then a perfect match was near zero. In fact, my “match power” was zero due to high antibodies. Match power is one of the metrics used to gauge potential donor matches.
I agreed to enter a study at UC to try to reduce antibodies through a process called apheresis. The one fear I had of the hemodialysis port came true: the doctors inserted it and used it for the apheresis. Compared to apheresis, installing the hemodialysis catheter was a breeze! Due to the low probability of avoiding dialysis, Christina and I agreed to enter the kidney donor paired exchange program. We were in the database 14 days (!!) when we received the call about a donor for me. The donor was a perfect match! We were witnessing a miracle in action. I received the call on February 18, 2016 of a potential donor, and through the incredible coordination of the UC transplant team, the National Kidney Registry, and teams at other transplant centers, we were successfully transplanted on March 2, 2016. There were 18 pairs, plus the altruistic donor, in our donor chain.
My kidney came on a charter flight from Minnesota to Cincinnati. Christina’s kidney flew from Cincinnati to a patient in Washington State. We don’t know all the other stories yet, although we have asked UC whether they can investigate getting everyone in the chain together at some point to meet.
It has been one year, and my kidney is functioning great. Christina is healthy and returned quickly to normal activities. My challenges include managing the side effects caused by the anti-rejection medications. Compared to dialysis, managing side effects is a breeze, and I enjoy living life, and this new normal taking medications to live. I am blessed beyond my wildest dreams to have been matched so quickly.

Every day is a gift. Living and deceased donors, and their families, are true heroes. Organ donation enables one person to help many others. With respect to kidney donation, healthy people can live with one kidney. The donor surgery, when performed laparoscopically as they did with Christina, enables the donor to resume life quickly. She went home the day after the 3-hour procedure, and several days later she was out with her friends. We take advantage of every opportunity to educate people about the benefits of living kidney donation, and avoiding NSAID use.

Thanks for the opportunity to share here.