There are many people who have made a difference in donating organs to others in need. Here are three stories from those who made the decision.
Melissa Bein, a transplant center administrator who worked at the Mayo Clinic in Phoenix and is now with UC Davis as an executive director. She donated her kidney to Risa Simon, head of TransplantFirst Academy.
“Though I didn’t realize it at the time, my journey to become a living kidney donor started early in my career at the bedside of the first patient I knew who died waiting for a life-saving organ transplant. Baby Bibbs was 18 months old and his mother and I stood by and watched his life slip away from end-stage organ failure.
I keep a photo of him in my desk and mark the passing of what would be his birthday every year.
If a viable organ had been available to provide a life-saving transplant, Baby Bibbs would be 22 today. A preventable death of an 18-month-old boy in the United States of America. I was appropriately outraged.
Working as a health care professional in the field of organ transplant I’ve had a front row seat to two extremes:
- celebrating with patients who received a life-saving or life-enhancing organ transplant
- grieving with family as a loved one died waiting for a life-saving organ transplant.
It’s the faces of those patients who died waiting that outrage me into action.
I believe the measure of a life is impact. Using this metric, the questions became:
- Why wouldn’t I donate a kidney to a person in need?
- If not me, who?
- If not now, when?
The decision to become a living kidney donor was important to me because I value walking the talk. I had spoken many words advocating for organ donation but putting actions behind the words was a different level of commitment.
Donating a kidney was a gift to my recipient, but it is also an ongoing gift to me. To know that another person’s life is improved as a direct result of my actions? That’s impact.”
“I did not plan on being an organ donor of any kind – deceased or living. My husband was my inspiration to act otherwise. In his family, most had PKD – himself, both of his only siblings, his mom, his only aunt and one of his two cousins. As a result, he witnessed kidney failure his whole life.
We both had international careers that took us all over the globe. When we weren’t on the road, we enjoyed regular workouts, hiking and anything active. But as our wonderful life continued, my husband’s kidneys starting failing. Working out became more challenging. He didn’t have as much energy. His days were not as productive at work. He needed to rest––more each day.
We saw his nephrologist more and the outdoors less. His diet was changing every few months to accommodate the limited kidney function. When his kidney function dropped to about 10%, we started dialysis and went on the kidney donor wait list. We were fortunate meanwhile to have about seven people test as potential live donors. But for one reason or another they were not suitable donors. Now we were tethered, in more than one way, to peritoneal dialysis three times daily.
“I became his nurse. I took and recorded his vitals throughout the day. I learned to give him iron shots. I maintained a bathroom that served as a dialysis warehouse with boxes stacked to the ceiling full of dialysis solution bags and cabinets full of syringes, gauze, tape, masks, hose clamps, and the list goes went on. Next to that room was a converted bedroom. This was our ‘sterile’ room. It is where the peritoneal dialysis took place. There could be no air flow, no pets, no visitors. The room was not used for anything but treatments. It was where we sat together for hours each day. We were grateful for this treatment option but hoped it would be a short-term solution.
After a few months, I grew anxious for a kidney donor. I hated to see my husband go through this uncomfortable routine every day. But that year for his birthday, I told my husband I was giving him one of my kidneys. He never asked me to donate. I was inspired to donate when I witnessed his quality of life diminishing. He lacked energy. He didn’t look or feel healthy. He worried about his future health and lifestyle. But I knew a kidney transplant would be his second chance––our second chance to reclaim the life we had and wanted for our future.
Although we were compatible in love, we were not compatible in blood type. But through paired donation, I was able to donate one of my kidneys to my husband indirectly. I donated one of my kidneys to somebody with whom I was blood compatible. In turn, my husband received a kidney from somebody with whom he was blood compatible. Through paired donation, I saved my husband’s life and somebody else I will never know.”
Personally, I had never really thought about organ donation other than checking that box on my driver’s license. However, one day in January 2013, an email came out from the Cave Creek Unified School District, where we live and where our two children attend school. Our elementary-school principal, Nancy Shaver, had polycystic kidney disease and needed a kidney. Polycystic kidney disease is hereditary at a 50/50 rate. Nancy’s two children and two siblings were tested for the disease and fortunately, all were in the clear. However, they were also tested as potential donor matches and unfortunately, none was a match. This was when I felt the first nudge.
It’s important to note that Nancy and I were not close at the time. We knew each other, as she was the principal of Lone Mountain Elementary School where my kids attended. She knew more about me, having known my kids through school, but I knew very little about her.
I called Nancy’s assistant and found out that the response from the community had been overwhelming. There were lots of people who had called inquiring about being a donor and this list of non-family members was long. Insurance companies usually test potential donors one at a time, so the waiting time can be considerable. At this point, Nancy was concerned about the progressive nature of the disease and was staying off dialysis through diet, exercise, and medication. But eventually her kidneys would fail and she would need a new kidney.
Fast forward to May, when I found out a donor had not yet been found. I just knew I was going to be her donor.
I contacted Mayo Clinic and learned about the steps to becoming a donor. Around Sept. 3, 2013, I found out that I was medically cleared to be Nancy’s kidney donor. This meant that based on my test results and from my team’s perspective, I was a good match for Nancy. I wasn’t surprised. I was excited.
Nancy and I decided on a date of Jan. 7, 2014, with the understanding that if it became medically necessary for her health, we would go sooner. I would have to take a month off from work, while Nancy would be at home for about eight weeks…hard for both of us, as we both love our jobs and don’t do well at sitting still.
The surgery went great. I recovered in the hospital for one night, and Nancy stayed two. My recovery was smooth and I had a little pain and discomfort the first week, but was mostly just tired. The doctors insisted that I take walks every day to speed recovery. And I ate when I had the appetite. Emotionally, I was on a high.
We just celebrated another Kidneyversary in January. Three years post transplant, Nancy’s new kidney is doing great. She is back at work, doing all things principal and loving every second. We have formed a crazy bond, which is hard to put into words. We were acquaintances at one time. Now, she is my family. She walks around with a new organ in her body, which is giving her strength and health. I’ve returned to a normal life working, working out, and not missing a bit that little organ – I’m right back to my old self.
Living kidney donation provides immediate positive results for the recipient: the new kidney usually begins to remove toxins from the recipient’s body within hours, and recovery time is shorter, compared to a post-mortem transplant. Also, many of the side effects of kidney failure reverse or slow. It is a joy to have watched the glow come back to Nancy’s face and to hear the energy and laughter in her voice. She is back to doing what she loves to do.
What’s more, the entire experience has changed me. The decision I made was a no-brainer; there was a need that I knew I could meet. I had the faith to know all would go well, the health to recover quickly and the hope that my recipient would be just fine. It made me realize just how important it is to give to others in this life. Life is a journey, and we are called to be our best selves and love our neighbors.
Organ donation allows you to give the gift of health and a new life to someone else in this world. You will forever change their lives, the entire experience will forever change your life, and you will carry the joy of serving another person forever in your heart. If you’re ever lucky enough to be a donor match…just do it. I did, and have not regretted it for a second.
I’m sure that my recipient feels like she was the one blessed, but really, I feel like the winner.