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Advocating for Yourself Letters of Hope: Episode 3

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In last week’s episode, Valen dove into the importance of finding your voice. In this third episode, Valen shares how you can use that voice to be your own patient advocate. She found that knowing her body, explaining how she felt, following her intuition and expressing to her medical staff the care that she wanted positively impacted her patient care. 

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: 

Advocating for yourself can feel like a full time job sometimes. You're dealing with your sickness and your appointments and your normal day to day life of cleaning your house and making dinner. And when you're navigating all of this, you're doing this a lot of the times not feeling well, and it's hard to find the energy to do everything.

Advocating for yourself is speaking up, knowing your body, explaining how you feel, explaining the importance of certain care that you need. When I go to the emergency room, I advocate for myself by having a spreadsheet that lists out all of my medicines and allergies and surgeries – having tools like that to be able to help others understand my health history really quickly when I'm in an emergency state. And when we meet a doctor or a nurse for the first time and we're in critical need of of emergent care, it's really important for us to be able to be confident to share what we go through in our condition with other people because we've lived this journey for so long.

We know it best. We know how we feel. We know how our body has handled certain instances. Like when I had repeat sepsis episodes, I knew how my body would respond to that, and it was important for me to be vocal and be able to share that with the doctors caring for me of: this is what happened in the past and this is how I usually respond to it. And they can't predict that when they're just meeting us for the first time. And I can tell you from personal experience how important it is for us to listen to our gut and follow our intuition.

There's been instances where I just had a feeling something wasn't right. One of them was when a nurse was changing the bag on my IV pole, and the room was dark, she left, and I just had a feeling something wasn't right. So I told my parents to turn the lights on and they turned the lights on and my IV tube wasn't primed. And if I didn't follow that gut and take action on it, there could have been severe consequences that I would have had to deal with.

When I was really sick and kept getting repeat sepsis infections, we were doing test after test and we just couldn't find the root cause of them. It got to a point where I had suggested getting a PET scan done. That was the one of the only big tests that wasn't done yet. And everyone said that usually is only when they think you have cancer. And I kept saying, well, let's just try it. And it was my intuition that we needed to just try something else and that determination to just keep going, and eventually the PET scan was approved, and the PET scan results showed that my liver lit up. And that's what led us down the path of looking into my liver, which was the root cause of my sepsis infections. And if I didn't listen to that inner voice and follow my gut and really push and be an advocate for myself, it could have taken longer, or we might never have found the reason for my repeat sepsis episodes.

So I think just hanging on to that and not giving up, even if it takes a while to convince others to listen to you or even believe what you say. Our voice, our patient voice is so important in this journey because it's our path. We live it. We understand it better than anyone else, and it's important for us to just continue to speak up.