The Kidney Project is a digital short‐form documentary that uses five interwoven storylines to provide a compelling portrait of organ donation in the United States. Currently, there are nearly 88,000 people awaiting a kidney transplant in the U.S. Recipients can expect to wait a national average of four years for a transplant, and spend years undergoing taxing and time-consuming dialysis in the meantime.
The National Kidney Registry (NKR) is out to transform the field of transplant medicine. By creating chains of donors and recipients, the NKR facilitates a kidney transplant in less than six months, saving any number of lives in the process. Transplant chains begin with an altruistic donor who willingly gives up his/her kidney to a complete stranger whom they may never meet. Donors and recipients are then coordinated from that initial pairing through The Registry’s living database, creating chains that can save 30 lives or more. Here’s the story of Karen Willis, one of those altruistic donors:
This story started many years ago when my husband and I began talking about doing a good deed for someone else. Over the years, the idea of the deed changed, but the one basic idea stayed the same: the desire to help a complete stranger or strangers in a big way. I don’t mean just doing something nice, such as volunteering for a nonprofit or giving money, which are valuable in their own right. I mean doing something life-changing. We put this goal on our bucket list and then left it to simmer for a while as we raised our two daughters and pursued our careers.
A couple of years ago, a friend of mine who is in her early 40s was diagnosed with breast cancer. I have always been relatively healthy and decided that the deed would be to do something to improve someone’s health. Once I decided on a health-related good deed, the idea of donating a kidney came very quickly.
I immediately found the NKR website, obtained information on the donation process, and completed the NKR initial screening questionnaire. I am lucky enough to live near Ronald Reagan UCLA Medical Center, one of the most successful hospitals performing kidney transplants and part of the NKR network.
I cannot say enough about how great NKR is! This is what I learned: Many patients who need kidney transplants have family members or friends willing to donate but are not a direct “match.” So the patient/donor pair go into the NKR database in hopes of finding other pairs that will match them. Frequently, “chains” of pairs are created such that one donor could potentially trigger a chain of donations. I liked the idea of starting a chain that would help many people with my single donation.
Kidney donors must complete a comprehensive physical and psychological screening, which took me more than a year to complete. Although a good percentage of people don’t pass all the requirements and ultimately are unable to donate, I knew that I would pass all the tests. I was determined to move forward with this and refused to accept rejection. My tests revealed that I had a “fatty liver” and an abnormally shaped adrenal gland. Both of these needed further testing and review by the UCLA experts to determine they were within an acceptable range. The UCLA tests also found that I had several unusually large gallstones. I was told I could not donate unless I had my gallbladder removed. I agreed and within a few weeks my gallbladder was out. My surgeon said that my gallbladder was highly infected and that if I had not had it removed when I did, it may have burst. If not for my kidney donation, I would have had a serious medical problem with my gallbladder. My donation saved me as much as it helped my recipient.
I will always remember the day that I was approved for donation: After months of medical tests and a gallbladder surgery, Suzanne McGuire, the living donor kidney transplant coordinator at UCLA, called to tell me that I had passed all the final medical hurdles and was now approved to donate. She input my file into the UCLA kidney database and within minutes found a match. She said that NKR would also input my data into their nationwide database to possibly find a better match, but I was happy that I was an acceptable fit for at least one person from UCLA.
NKR agreed that the UCLA patient was the best fit, and so my match was confirmed. I was told that my match was a male in his 40s from Orange County, California. That was all I knew. I could find out more about my recipient only if he agreed and only after the operation. If he did not agree to give me more information, I would never know anything more about him.
Four days before the surgery, I went to my temple for Shabbat services and the president of our temple announced my donation to the congregation. During his announcement he gave me two bottles of wine—one to enjoy before the surgery and one to enjoy once I had recovered. Members of my synagogue, many of whom I had not spoken with before, came over to wish me well.
The day of the surgery, I was more excited than anything else. I knew I would be okay—after all, I was the healthy one and had survived one Caesarean delivery and one gallbladder removal. I trusted the surgeons at UCLA. As my husband and I drove to UCLA at 5:30 a.m., I sent a text to one of my close friends in New York telling her that I was on the way to the hospital to donate my kidney; she said she was proud of me and that she would be thinking of me during the operation. I went into surgery thinking about her note, knowing that I would be okay, looking forward to drinking my second bottle of wine, and eager to one day meet the person who was receiving my kidney.
The day after the surgery I was weak, uncomfortable, and in pain, even with the painkillers I was taking. Around noon I was told that my recipient wanted to meet me! It seemed like a mile from my room to his, but the walk was worth it because there he was: Joe Felix, my recipient!
Joe is a great guy: friendly, energetic, considerate. And like me, he has two daughters, though his are young and mine are young adults. Joe told me that he had kidney failure when he was 19, and that his younger brother had given him a kidney that had lasted 17 years. He was on dialysis for a year and was told it would be difficult to find a match for him because second transplants are harder to find than first transplants. He was surprised when he was told that a match (me!) was found only a few months after he went on the NKR list. His ex-wife was his “partner. When I heard this I thought, he must be a great guy if his ex would donate a kidney on his behalf!
I thought meeting Joe would be the highlight of this story. Meeting him was everything that I expected and more. He was gracious, appreciative, a great father, and an all-around nice person. I loved hearing his story, hearing about his struggle with kidney disease, and the birth of his two daughters. And we have a lot in common: For instance, we both have trouble sleeping. (Joshua, my husband, attributes Joe’s insomnia to my sleepless kidney.) When I am up late at night I think about Joe who, many times, is also unable to sleep, and we write each other on Facebook or email. As I have gotten to know him, I have become happier and happier to have helped such an overall thoughtful and caring person.
A few months after the surgery, a documentary producer asked if I wanted to meet the other people in my chain. Of course I said yes. Joshua and I met the three donors and two of the three recipients in our chain. It was a magical event; we had lunch and shared our stories. I am so grateful for that day, truly one of the most memorable days of my life. I helped to give three people back their health, their dreams, and their ability to have a high-quality life with their families.
Although my donation was a few months ago, it seems like a lifetime ago. I have fully recovered from the surgery and am back to my life as it existed before. I have met the recipients in my kidney chain, shared their stories and know that I made a difference in their lives. I am so grateful for that experience.
Have you considered doing an altruistic organ donation like Karen did?
Karen Willis lives in Los Angeles and is married with two daughters.
If you live in the Los Angeles area and want to learn more, please visit the UCLA Kidney Exchange Program.
These are solely the author's opinions and do not represent those of TakePart, LLC or its affiliates.