The Transplant Waitlist Letters of Hope: Episode 6

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More than 106,000 people are on the waitlist for an organ transplant in the United States, and on average 20 people die every day waiting for a transplant. In this week’s episode of Letters of Hope, we focus on Valen’s experience with the transplant waiting list and the internal struggles that came with waiting for the call to get her liver transplant.

"It’s not just waiting for that call but wondering what all is connected to that. Will I get a transplant? Would I ever be a strong wife again? Would I ever be healthy? You just have all these questions going through your mind every day and that limbo, that wondering if you're going to make it to the next day, make it to get the call, it is such a challenging space to be in. You feel like everybody else’s world is continuing and yours is just standing still."

Valen Keefer | Kidney & Liver Transplant Recipient

Did you know? Every nine minutes another person is added to the transplant waiting list, but just one donor has the power to help more than 75 people. To learn more about becoming an organ donor visit: https://www.organdonor.gov/sign-up

This docuseries is hosted by our patient advocate, Valen Keefer, the series describes the ups and downs, the challenges, and the hope, that someone might experience before, during, and after receiving a transplant. For those considering donation, you can access several interviews with living donors who talk about the process and the positive impact it’s had on their lives.

Read Transcript

VALEN:

When you’re in need of a lifesaving organ transplant, the wait list is something that we all deal with. You sit and wait in limbo for the call. When you're on the waitlist, you're in need of a lifesaving organ. So you're in a very fragile state of health. Some people can sit on the list for a week or several years.

From my experience, I was so sick that I remember a day where I called my health care team to remind them of how poorly I felt because I just wasn't sure I would survive much longer. During that timeframe, you have such a close connection with the possibility of death, knowing that you're in a stage that if you don't receive a new organ, you're not going to survive. 

I wasn't the strong wife anymore that I wanted to be, and I would strive to walk around the grocery store with my husband, Noah and I was so sick that it got to a point that I couldn't do that anymore, and I'd have to lay in the car while he grocery shopped. And it was so hard for me to stop doing things like that. 

A moment I'll never forget is when I got to a point where Noah would be talking to me and he asked me a question, and I felt so exhausted that I felt like I didn't even have the energy to answer his question and communicate with him. And at that point, I thought, I just don't know if I'm going to survive. I don't know if I'm going to make it to receive the call. And that's a really scary place to be. 

And it's not just waiting for that call, but wondering what all is connected to that. Will I get a transplant? Would I ever be a strong wife again? Would I ever be healthy? You just have all of these questions going through your mind every day and that limbo, that wondering if you're going to make it to the next day, make it to get the call is such a challenging space to be in. You feel like everybody else’s world is continuing on and yours is just standing still. 

Waiting for somebody to save your life, waiting in a sense for an organ to become available, which means that someone has to pass away in order for that to happen. Those are really hard emotions. I think you need to separate yourself and realize that someone isn’t dying for you to survive, but it's somebody that their journey, their passing away, and they made a decision. They said "yes" to organ donation, so that they can save other people's lives when they pass on. 

And I think looking at it from that perspective helps because there's a lot of people that endure survivor's guilt. My husband and I, we would still try and find some type of joy in every day and some type of connection to reality in the outside world because we felt so disconnected at this time. We were just kind of suspended, waiting for hopefully something to happen to continue our lives. We knew that in order for our lives to continue forward, and for me to get healthier and us to have any type of future together would be for me to receive a liver transplant. 

We found this sweet little coffee shop that we really loved, and we would try and go there when I was feeling well enough. And I remember that week before transplant, my phone is next to me at all times. I had a little carrying case that I would carry it with me all the time so it wouldn't be in my purse, so I wouldn't miss a call. I mean, that's how important it is. If you missed the call, you missed the transplant. And I remember saying to family and friends, don't call me. I didn't want my phone to ring and have it be anybody else but the call. So that's how vital this time period is in the transplant journey. You’re just so relying on your phone to ring. 

But if we could get a moment or two each day, a healthy escape to bring a little bit of peace to ourselves, it was helpful. I don't know that we were successful in doing it every day, but I know that these small moments helped just let us breathe for a moment and give us some hope and to just trust the process and that everything would be okay. And it was good for us to get out, to get some fresh air, to feel like our world was normal when it was the furthest from normal than it's ever been. And I think being able to have that healthy escape was really helpful for us. 

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Speaker:
Valen Keefer
Multi-organ Transplant Recipient
Patient Advocate
Thermo Fisher Scientific

Recorded:
June 27, 2022

Series: Letters of Hope (video series)