The Crucial Care Partner Letters of Hope: Episode 5
Having physical and emotional support during your transplant journey is crucial. In the first few episodes, Valen Keefer leads you through her personal journey of receiving the diagnosis and finding her voice. This week, Valen and her husband, Noah, joined together for a heartfelt and open discussion on the important role of a care partner.
"You want to be there to be a champion for them, even if it's just to hold their hand. And the reality of the situation is you can't care for somebody if you're not at least caring a little bit for yourself."Noah Keefer | Husband and Caregiver
Noah guides you through the responsibilities of a care partner and provides advice on advocating for your loved one to ensure they are getting the care they need. Valen shares how it’s hard for a patient to navigate being sick and receiving support without feeling like a burden or experiencing guilt. The caregiver-patient relationship is a two-way street, and both need to care for each other.
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.
VALEN:
What I always find interesting about growing up with health issues is that I don't think I ever expected to find someone like Noah to be able to step up and join in on this journey. Because as you hear when we talk, we say "we" like I even say, "when we got a liver transplant" because it feels like we did because he was there every step of the way, and I think that exemplifies the power of a patient and caregiver partnership in this journey.
I feel extremely lucky to be able to not only have had great parents to care for me and help keep me alive and keep me going but now having Noah as a caregiver. There's so many things that he brings to the table. He gives me something to look forward to. And I think when you're sick, you need that joy. And even when you're healthy and on the other side of transplant, you need still that forward-thinking of positivity because you know things can come up.
NOAH:
Really, you know, the caregiver role is one that's always in place. I mean, it really starts at the moment of diagnosis. And from there, it becomes more of an official role as your loved one, as the patient has more health hiccups, more hurdles to overcome. And you really have to start to fill in a little bit.
You have to start to help them advocate for themselves, to help speak out on their behalf, to make sure that they're getting the care that they need. You might answer kind of how they're feeling, how they're doing day to day. The patient might be like, I'm doing fine. They might not realize that they're starting to slow down a little bit, that they're starting to be in pain more often or withdraw a little bit more. And you're that independent voice that can say, well, actually, remember you forgot where your keys were or that you couldn't go get the mail the other day. Having that perspective and giving the reality of the situation to the healthcare team is a really important one.
VALEN:
It can be really hard as a patient to be navigating being sick and receiving all this support without feeling like a burden or having guilt associated with it. Being 39 years old and us navigating health issues now for many, many years – there are times that, of course, I wish I was 30-some without any health issues, we'd be able to have children and lead a life like that and give Noah what I think he deserves.
And those are emotions that are really hard for me to navigate at times, and I have to go through trying to be confident and tell myself that I didn't do anything to cause these issues that I have and just know that I deserve love and care. And I think it's important for all of us to know that and that we need to lean into the fact that we need support. And when we do need it. to speak up and ask for it and be willing to accept it. And that's been very hard for me to do.
NOAH:
Yeah, and that's an ongoing life lesson or an ongoing progression of being somebody that has a chronic illness is being able to admit that you need care and accept care. And I know, Valen, it's something that we've struggled with as a team. And there's times where I want you to do less and you want to do more because you're trying to take some ownership of your care.
But like you said and like you and I've talked many times, this isn't something that you had done to yourself. This is a disease that has caused this issue. And, you know, there's there's nothing you could have done to prevent it.
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