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Living Immunosuppressed Letters of Hope: Episode 8

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In the previous episode, we followed Valen through her liver transplant surgery to her first steps on the road to recovery. In this episode, she shares her medication regimen and discusses the realities, side effects, and responsibilities of living immunosuppressed. A medication regime is vital for success post-transplant, but Valen shows that it does not have to limit your quality of life.

"I know heading into transplant, it can seem overwhelming to navigate all the medicine, but it becomes a part of your life, and I look at it as an opportunity that I have to take the best care of myself and show my gratitude for the second chance and gift of life that I've been given" -Valen Keefer"

Valen Keefer | Kidney & Liver Transplant Recipient

Did you know? It is vital for pre- and post-transplant patients and their immediate contacts to stay up to date on their vaccines. Even though a transplant patient may not mount the same strong response to a vaccine as a person who's not immunocompromised, it's critical to take advantage of every tool to stay healthy. Learn more: FAQ: COVID-19 Basics for Transplant Patients

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

Receiving a new organ and becoming a transplant recipient is a gift that comes with a whole new set of responsibilities because now you are embarking on a lifelong journey of being immunosuppressed. I think what's challenging living immunosuppressed is that we look healthy but that doesn't equal how well we're doing or how we respond to things and it comes with responsibilities and new normals that we have to navigate. When you receive a transplant, it is a new organ and a foreign object in your body. So, we have to take immunosuppression medicine to suppress our immune system so that our bodies don't reject the organ that we just received but that comes with not being able to fight off colds and illnesses well. I can get more sick than I would if I wouldn't be taking this medicine and wouldn't have a transplant. Also, living immunosuppressed, you're at a heightened risk of skin cancer.

So, I wear sunscreen every day and every six months I get a full skin body check for skin cancer. Our whole world and how we respond to things completely change and we have to respond differently in the way that we care for ourselves and the decisions that we make because of having a suppressed immune system. Another important part is for us to embrace that this is our new world and a big part of this is for us to take ownership and speak up and be okay with this transition in our life and know the importance of us advocating for ourselves every day, even though some days it can feel exhausting to continue to ask if somebody is sick before you go over to their house, or to have to re-explain to a family member or friend that you just think by now they should know and understand.

Being immunosuppressed and navigating COVID has been really, really tough for our community. We started out not knowing if the vaccine was safe or effective for our community, and it hasn't been as effective for transplant recipients. Now more than ever, it has been important for us to take the best care of ourselves and not jeopardize the health that you have.

I take pills three times a day, around 20 total per day. Two of the medicines is anti-rejection. I also have epilepsy so that’s some of the medicine. And when you have a transplant, sometimes other complications come from it. I have high blood pressure from my polycystic kidney disease and take medicine for that as well. So it's a variety. There's some anti-rejection and there's other pills that come along with receiving a transplant like supplements and things for my overall health. I mean, these pills are vital for our transplant, the longevity of our transplants, and it doesn't limit your quality of life in the sense of travel. For me, I'm really organized before we go out in our RV and go anywhere. I have individual pill cases for every day because if I don't have my medicine, I can't go anywhere. It is vital. It's something that's a part of everyday and it's the big component of what's keeping you alive.

I know heading into transplant, it can seem really overwhelming to navigate all the medicine, know the check ups that you have to do, but it just becomes a part of your life and I look at it as an opportunity that I have to take the best care of myself and show my gratitude for this second chance and gift of life that I've been given.

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

July 18, 2022

Series: Letters of Hope (video series)