Mental Health Letters of Hope: Episode 11

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In the previous episode, Valen Keefer discussed her experience with health hiccups she has endured through her transplant experience. She provided advice on navigating and coping with these inevitable little blips that happen along the journey.

In episode 11 of Letters of Hope, Valen sheds light on mental health in the transplant community. Part of the transplant journey is being assigned a transplant coordinator, but there is no requirement of therapy or emotional support for the process. Valen remarks that this is a life and death situation, and the inclusion of mental healthcare would really make a difference in how people are able to navigate the journey, recover, and reach a better quality of life post-transplant.

"The truth is, on this lifelong journey, we have to deal with questions and concerns our entire life like, ‘How long will this organ last? Will I need another transplant?’ It is important for us to be able to be comfortable to really share what this journey is like and embrace the things that we have to deal with."

Valen Keefer | Kidney & Liver Transplant Recipient

Valen shares that before her liver transplant, every morning she would listen to the same song while visualizing herself as healthy and happy. This gave her something to look forward to and something to work towards.

There are currently over 106,000 people on the national transplant waiting list. Every nine minutes another person will be added to that list. One donor can save up to 8 lives and enhance 75 more. Learn more about being a donor here: https://www.organdonor.gov/learn/organ-donation-statistics

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:

In the transplant community, one thing that we all have in common is our scars. But the scars that we don't talk about enough are the scars on the inside, the ones we can't see. So it's especially important for our community to shine a light on mental health.

When you're receiving a transplant, you're assigned a transplant coordinator, but you're not assigned a resource or someone to go to for counseling, (or) support for what you're going through. You're told that resources are available, but you have to take the action versus having the support provided and making it easier for you. This is a topic that isn't always easy for people to talk about and it's not just for the recipient ourselves. I think it's for our care system as well, for our caregivers, those who support us like family and friends. I remember having a conversation with my mother-in-law when I was getting close to receiving a liver transplant. I was on the wait list, wondering if I was going to get the call and survive. And I asked my mother-in-law if she thought that Noah was thinking that I was going to die. When you face death, it's inevitable that you're going to look at life differently, that you're going to have things to process that you may never be able to fully process. I think part of transplant evaluation should be an appointment with a therapist, (or) a counselor to discuss what you're going through. This is a life and death situation and it would really make a difference in how we're able to navigate the journey, recover, and the quality of life that we could live post-transplant.

When I was young and I'd see other people without any scars. I think back to when my back didn't have any scars or my abdomen didn't. And I think it's important for us not to look back on our journey and look forward on it. And because of these scars, we're able to have a future and look forward to things. I was the young person that was ashamed of my body, and now I'm proud of what my body has been able to go through. It's important for us to be proud of who we are, proud of what we've been able to endure and overcome and embrace this as a beautiful part of our health challenges. It's completely normal to feel scared and overwhelmed and confused about your future when you're heading into transplant, post-transplant, the long journey of living immunosuppressed.

Group sessions are really impactful because we can share experiences, find common ground with other people, seeing the commonalities between us. The variety of our journeys. And how many people have gone through similar things and how many people are doing well and living a good quality of life post-transplant and these type of conversations really help us navigate the hard times and give us hope to keep moving forward.

Sometimes we have to come up with ways on our own to cope. For me, before liver transplant, every morning I'd listen to the same song and I'd visualize myself healthy and happy and that gave me something to look forward to and something to work towards.

The truth is, on this lifelong journey, we have to deal with questions and concerns our entire life like, "How long will this organ last? Will I need another transplant?" And it's important for us to be able to be comfortable to really share what this journey is like and embrace the things that we have to deal with. And I think that's the importance of us being open about it and having people that will listen and understand to help normalize what we've been through and help give us comfort, and that there's a purpose to this journey and a bigger picture and reason for all of what we're going through.