How donating a kidney gave me joy, and someone else his life back

October 5, 2016 Swedish Blogger

 

Your imagination will take you all sorts of unexpected places. This year, mine led to an operating room where I donated a kidney to a stranger.

KidneyTransplantHarvey 
Larry Epley and Patricia Harvey stand together in the center. Next to Larry on the left is his wife, Trish. Next to Patricia on the right is her husband, Zach Kramer.

 

My trip to the OR started when I imagined what it would be like to have kidney failure, or worse, if someone I loved, like my dad, had kidney failure. I’d already seen the effects of kidney failure first-hand.

My husband’s grandmother has kidney failure and she spends four hours a day, three times a week having her blood filtered in dialysis treatment. She feels exhausted and sick, and she only gets weaker as time passes. Unfortunately, she is in too weak a state to undergo surgery to receive a healthy kidney.

But I hoped if another family member or friend needed a kidney that someone, anyone, would step forward to help. It led me to thinking about that Gandhi quote, “Be the change that you wish to see.” If I hoped someone would give a kidney to my family, then didn’t it make sense for me to do that for someone else?

Research shows that people who donate kidneys live healthy, normal lives with little impact. And even with two kidneys there are no guarantees in life. I had the strong gut feeling that I had to make the most of the time I have now. I don’t want to find myself at the end of my days, looking back and wondering if I could have done more to make the world a better place.

Taking the first steps

So it felt right in May 2015 to make the jump from platelet donor and Locks of Love gal to donating a kidney to a stranger. Since my teen years, I’d been growing my hair and cutting it every four years for Locks of Love, which makes wigs for children who lose their own hair to serious medical conditions.

I contacted the Organ Transplant Program at Swedish, where I’m the operations manager for the hospital’s foundation. From May to January 2016, the program took me through the donation process, including paperwork, medical tests and a psychological evaluation to determine if I was a suitable donor.

Reassuring loved ones

As I went through the evaluation process, I was selective about who I talked with about donating. I wanted to talk with people who had experience with kidney donation or would be supportive. I avoided the topic with people who I thought would react out of fear and without much knowledge about the risks of kidney donation.

My husband and family were of course worried about the surgery, but I explained that I’d met with multiple Swedish physicians who’d clearly explained the procedure and the associated risks. I’d also talked with experts from national kidney exchange programs and others who had donated a kidney.

My goal: a donation chain

While Swedish took care of the medical side of preparing for a transplant, I researched how to make the largest possible impact with my gift. I learned that often when someone needs a kidney, a friend or family member is willing to give them one. However, because of blood type, antibodies or various other reasons, a potential donor isn’t always a good match.

But a transplant can still work if you can find two sets of people who aren’t matched and have them swap donors. Or even better, have a non-direct donor, also known as an anonymous or benevolent donor, give a kidney and start a donation chain. In this scenario, an anonymous donor gives a kidney to someone and his or her incompatible friend then pays it forward by donating to the next incompatible pair, who pay it forward again. This is what I decided to do.

Helping difficult-to-match patients

It’s important that non-direct donors give a kidney through a national exchange program, for two major reasons. First, using a national pool means there are more possible matches to be made and a better chance of getting the closest and most successful match for the patient.

Second, what tends to happen is easy-to-match patients are matched within their hospital system and only the most difficult-to-match patients are put in a national program. So the national program has the incredible challenge of pairing difficult-to-match patients with difficult-to-match donors. If easy-to-match, non-direct donors are added to the national pool, it eases the difficulty of finding kidneys for the patients most difficult to match.

My husband became more comfortable when he heard one of his favorite podcasts, Freakonomics, discuss how kidney chains can lead to so many people receiving kidneys. “I get why you want to do this,” he said with excitement. “It’s a really amazing.”

I have a match

I spoke with Swedish about my desire to start a national chain and I was delighted that they agreed to go above and beyond to participate in the United Network for Organ Sharing (UNOS) national exchange program.

I woke up at 3 a.m. the morning of my surgery feeling positive and relaxed. My husband and I drove to the hospital, where I said goodbye to him after I was prepped for surgery. The anesthesiologist started counting down from 10 and the next thing I knew I woke up groggy from surgery.

Success and gratitude

I spent two nights in the hospital and three weeks at home, though I was antsy and ready to return after two weeks. I tired more easily for about two months after surgery and dreaded sneezing for a while. Now, nine months out, the only side effect I have is a new and amazing ability to sleep through our cat’s persistent good-morning meowing.

The moment that has surprised me the most about the whole donation process came the day after surgery. My kidney coordinator casually told me that my mystery kidney recipient, a local person as it turned out, was doing well and I started crying. I hadn’t realized until that moment just how responsible I felt for his well-being or how grateful and relieved I was that he was doing well.

I change a life

I recently met Larry Epley, who received my kidney after 3 ½ years on dialysis. Larry, 67, has polycystic kidney disease, which led to kidney failure. On dialysis, he was weak and tired, unable to spend more than an hour at a time outdoors on activities. Now, Larry is right back doing the things he loves: Riding horses, camping, golfing, hunting and traveling.

My donation is a memory now, but it affects Larry’s life every day. We’ve had lunch a couple of times, and it’s gratifying to see how busy and full his life is again.

Enrich a life

From the chain I started, six people across the nation received kidneys. I’m delighted to say that our chain has inspired several other people to step forward and donate a kidney.

I am happy that my kidney has found a new home with a family that loves and appreciates it in a way I never did.  And I’m grateful to our families, Swedish, UNOS, everyone who participated in the kidney chain and anyone who is doing something to enrich the lives of others.

If you are interested in learning more about donating a kidney, I encourage you to talk to the specialists at the Swedish Transplant Center, by calling 1-800-99ORGAN.

Be a donor, start a chain and change a life!

 

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