After receiving a diagnosis, finding your voice can be an important tool to help you navigate your path to and through transplantation. In episode two, Valen Keefer and her mom share her journey from growing up with no voice, to discovering her voice post-transplant. Valen discusses the varying ways we can find our voice and the choice we have to turn take our challenging times and turn them into something meaningful and beautiful.
This docuseries is hosted by our Patient Advocacy Consultant, Valen Keefer., Tthe series describes the ups and downs, the challenges, and the hope, that someone might experience before, during, and after receiving a transplant.
VALEN: Polycystic kidney disease goes back as far as five generations in our family. Growing up, I had no voice. I didn't know anyone else going through our disease except knowing my mom had it and I had family members that passed away. But the unique thing is we didn't even talk about it within our family. It's like I got sick, and we dealt with it. As a child, finding my voice could have been if I just saw someone else that was going through the same thing. And that could have made me not feel alone.
VALEN: So, there (are) different levels of finding your voice, whether it's seeing commonalities in somebody else, whether it's the ones that are actually standing up on a stage and advocating for the community as a whole. And I think no matter what level it is, there's importance to it.
MOM: When things appeared because they did, I can't describe how devastated I was. In her adolescent years and teenage years, I'd find we'd go to doctor's visits and the doctor would say, well, how is she? And I'm like, well, and then I'd explain how she is. Like, you'd sit there and then, or even if the doctors say, "Valen, how are you?" She'd go like, “Mom, go ahead, answer for me.”
VALEN: She was my mom, my friend, and took on the caregiver role.
MOM: I was still the person that answered the questions, took the notes for her medicines, and everything. And your dad, you know, he’s…he's a rock.
MOM: She got her voice right after she got her transplant. And when a nurse came in and she told Valen the medicines to take and I'm like, “Okay, what's that and what's that?” And she's like, “No, no, this isn't – this is Valen. And if she wants to succeed with this, it's your role." I actually trusted it because she was, by this time onboard, and she was absolutely ready to handle it.
VALEN: Now I feel (with) Noah being my caregiver, it's more of a partnership because I'm an active member. And I think sometimes finding your voice could be as simple as seeing yourself in someone else, meeting others that walk in your shoes, about to go through what you are. The comfort in that is huge, just that you feel seen and heard and see somebody that's post-transplant and say, "Okay, if she can do it, I can do it." And that in itself can give you hope.
NEWS REPORTER 1: A young York County woman has spent most of her life struggling with incurable kidney disease. Now her story is being told.
NEWS REPORTER 2: Valen Keefer, she's a patient advocate.
NEWS REPORTER 3: Valen Keefer, she's had not one but two organ donations.
VALEN: Finding our voice doesn't necessarily mean it’s speaking and sharing. I think it can come out in other beautiful ways. For me, I learned of my love of writing and that has become so therapeutic. I've seen many in the community who paint and draw and do all kinds of art, and that's just a time for us to escape in a healthy way and get to a positive place and separate ourselves from all that we endure. It's almost like we have these pent-up experiences and challenges and these emotions that build up. That it's like we don't know what to do with them. So they need to come out, and we have that choice. We can take these dark, challenging times and we can turn them into something meaningful and beautiful and help other people, you know, whether that's finding our voice to share it with just one individual, to help them on their journey or many individuals or create something beautiful. I think there (are) a lot of opportunities to do it, and it doesn't have to be on a large visual scale. It can be small and intimate.
Multi-organ Transplant Recipient
Thermo Fisher Scientific
MAY 28, 2022
Series: Letters of Hope (video series)