Lisa Emmott is the creator of the Kidney Warrior project, an effort to raise awareness about living organ donation while encouraging people to become living organ donors. Lisa and her husband, Neil, sat down with CKF to tell their story and talk about why living donation is so important.
When Neil Emmott was diagnosed with Polycystic Kidney Disease and was approaching kidney failure, the only solution was dialysis or a kidney transplant. Once placed on the deceased donor list, Neil’s wife, Lisa, feared that it would take too long to find a match. Lisa turned to social media to look for potential living kidney donors for her husband. To her surprise, these living donors were much closer than she thought. Two teachers from the Emmotts’ daughter’s school, Britani Atkinson and Allison Malouf, volunteered to donate their kidneys. Although Britani and Allison’s kidneys were not a perfect match for Neil, their organs were put into a kidney donation chain that subsequently saved seven lives, including Neil’s. That’s how the Kidney Warriors began.
Lisa: We found out that Neil has Polycystic Kidney Disease (PKD) by accident, through a routine physical in 2001—unrelated to his kidneys. With this disease, you can manage your lifestyle accordingly and plan for the inevitable day when your nephrologist says, “It’s time to look at transplant options.” We knew that was coming. We were in a watch, wait, and hold pattern for 15 years.
Neil’s brother was more than willing to be his donor. That is something we would never take for granted or take lightly. He went through the testing process but was denied due to a minor medical condition. The team at Johns Hopkins Hospital elected not to approve him as a kidney donor for Neil. At that point, I became Potential Donor #2. I’m healthy, fit, and lead an active lifestyle. However, due to a minor condition in my renal arteries, I am unable to donate a kidney, period—to anyone.
After Door #1 and Door #2 closed, in terms of potential donors, I went into panic mode. I had this “warrior wife” mentality now that we were in this “what are we going to do?” scenario. Up until that point, we had been very private about this, hoping to wash our dirty laundry in our own backyard and move on with life. In hindsight, perhaps, having to go public was one of the best things to happen because it not only jump-started this chain that saved seven other lives, but now, hopefully, our story will inspire others to do the same. This is one medical situation where a living person—friend, family member, acquaintance, stranger—can actually do something to help, rather than just saying, “I’m thinking about you.”
I had only known Allison Malouf for a couple of years. She was our youngest daughter’s teacher and the best teacher our daughter has ever had. This was before she had even stepped up to donate a kidney for Neil. I confided in Allison because her husband is also a living kidney donor. When I told her about Neil’s situation, her immediate reaction was, “I want to give my kidney to Neil.”
I knew Britani Atkinson for over a decade. We were always close friends. I went to Britani to let her know what secret I had been keeping from her, so to speak. I wanted to tell her before we went public with the news on Facebook. Without my knowing, she went through all of the testing and evaluations at Johns Hopkins and was approved to be a donor. Britani and Neil were what they call an “incompatible pair.” Say, a husband wants to donate one of his kidneys to his wife, however, they’re not a good blood and tissue match. They are both entered into what is called a paired exchange, which is sort of like a dating pool for kidneys—to find a better match for one’s blood and tissue type. With paired exchange, it can be a minimum of two pairs (a minimum of four people) or a chain of 2-46 pairs and counting!
At the same time, Allison was approved as a potential donor for Neil as well. Both Allison and Britani entered into the paired exchange program with the National Kidney Registry (NKR) at Johns Hopkins for Neil. Because Britani is blood type O, a universal donor, she matched more quickly and was the first one to have the transplant surgery on Neil’s behalf. Two months later, Allison went ahead with a non-directed donation, also at Johns Hopkins. In effect, Britani and Allison kick-started two organ donation chains through their acts of kindness.
Neil and Britani’s chain consisted of four donors and four recipients. We weren’t allowed to know anything about the others in the chain, due to HIPAA. All we knew was that one of Neil’s kidneys was coming from California and Britani’s kidney was going to Boston. Since then, Neil actually met his donor—the kidney from California. She is a mother of three who donated one of her kidneys on behalf of her friend, who needed a kidney in the same situation. Like Neil and Britani, the two were an incompatible pair, which is why they were entered into the exchange as well.
Allison’s donation was also a part of a chain reaction of sorts. She donated her kidney in a non-directed donation and the hospital paired other donors and recipients in need. Unfortunately, we don’t really know anything about the rest of her chain. We do know her kidney was flown to California and there will certainly be more chains because of her generous donation—more people in need of transplants getting paired up with the best-matched organs from donors willing to give.
Because we had living donors, Neil didn’t have to wait on the deceased donor list. The deceased donor list means you are looking to receive an organ from a deceased donor. This can take five to seven years—sometimes up to ten years if you live in a densely populated area, like New York City. We chose to bypass this list because we just simply could not say, “Okay, I’ll sit and wait for my phone to ring in six years.” The waiting list is exactly that: you will sit and wait. That is not an option, which is why I am adamant and passionate about encouraging others to consider living donation.
Another advantage to living donation is, not only do you bypass that dreaded waitlist scenario, but a living donor’s organ lasts twice as long as that of a deceased donor’s organ. There are so many advantages to living organ donation. I guess the biggest disadvantage is letting go of one’s privacy through the process of donating an organ, but it’s all risk versus reward in that scenario. If you take human emotion out of it, it’s a no-brainer—but human emotions are strong things. The statistics are clear and valid and real: living donation gets rid of the wait time and living donor organs last twice as long.
Neil: Life post-transplant has been great. You go from very high toxin levels, very low kidney function, and very low energy—then, immediately, your energy is back and everything is back to normal (other than the recovery from the surgery). As far as the “Kidney Warrior” project—Lisa’s initiative was born out of her disappointment at not being selected as one of my donors. Now, she is donating her voice, time, and effort to do everything she can to raise awareness about living organ donation. She chose the word “Warrior” and she’s done all of the branding. She is involved with a lot of different organizations and has been in touch with various media outlets. She’s very active on Facebook—she didn’t even have an account before we went public with my medical condition. She is a team member of Donor to Donor, a group consisting of both donors and recipients who aim to raise awareness about living kidney donation. She attends events for the Polycystic Kidney Disease Foundation—events focused on PKD, my particular kidney disease. She also educates others about the National Kidney Registry (NKR), the private organization that arranges all of the exchanges. Lisa’s initiatives are passionate and multipronged, but she’s still in the process of finding where she can be most effective in seeking out living donors while helping people who are struggling with how to ask—because that isn’t easy for many. It certainly wasn’t easy for me. Without Lisa, I would’ve waited and suffered much longer before finding a solution.
It’s a supply-and-demand. If we can’t help the “demand” side, which is helping people learn how to ask, we can perhaps help the “supply” side by getting more people to donate. Whether they do it altruistically or if they see our story and are inspired to make the decision to step forward and help someone they know in a similar situation. However hard it is to ask, if you can’t personally ask, find an advocate—someone who is not afraid to ask the question. Find someone else who will be your warrior.
Lisa: No one on Earth was probably more determined than I was to do something about Neil’s situation. I wasn’t going to sit back and wait while he deteriorates. You do need an advocate—or what I’ve termed, a “warrior”, waging battle on your behalf—to keep going and raise awareness. Once you raise awareness and make the problem known, people will rise to the occasion and knock on your door.
There are also some misconceptions about organ donation. People say, “Oh yeah, I’m an organ donor on my driver’s license,” which is wonderful and we encourage people to continue registering as organ donors. However, less than 1%—or one in 500 people—die in a manner where their organs can actually be used. My goal is to raise awareness about the living organ donations, specifically kidney donation, which has the highest waitlist and longest wait time—over 100,000 people are currently waiting for a kidney. The total waitlist of organs is about 115,000, so kidneys are the huge frontrunner there—the biggest area of need. They are also the easiest to give while you’re alive. A living kidney donor can function just as well with one kidney and, often better.
Obviously, I’m quite passionate about increasing living kidney donation. I also recognize it is major surgery and it’s not for everyone. But, it is for someone, or the programs wouldn’t exist as they do. Our story didn’t unfold overnight and it didn’t pan out the way we envisioned. However, more people benefitted and will hopefully continue to benefit if they can learn from stories like ours.
Original interview transcribed, edited, and rewritten by CC Cunningham, CKF Program Coordinator.