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I'm Aware That I'm Rare: Camille Frede, RN

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Camille Frede, RN is from Grand Rapids Michigan. She was diagnosed with pulmonary hypertension at the age of four. Camille became a nurse because she wanted to give back to her community and advocate for her patients. She uses the gift of being a patient herself to mirror her empathy for others.  This interview was conducted while Camille was in the hospital awaiting a heart/lung transplant.  After 48 days in the hospital and 23 on ECMO, she received the call on 3/25/18. 


My name is Camille Frede. I am from Grand Rapids, Michigan, and I am 24 years a survivor with pulmonary hypertension. I was diagnosed at the age of 4, and it was discovered that I had an atrial septal defect. That means that the wall between the two atria of the heart was basically gone, so the heart had a hard time pumping oxygenated blood to my lungs and then out to my body.

The only reason why we were diagnosed so early on was because we went to the University of Michigan, and there was a doctor there from Germany doing a sabbatical, and he somehow recognized my pressures were super high. So, we were then diagnosed with pulmonary hypertension and was on one oral medication until I was 7, and then I was put on IV medication, and I’ve been on IV medication since.

This summer, I began to decline, and I noticed that I wasn’t able to walk as far as I could without breaking or bike as far as I could without having to do multiple inhalers. My activity level decreased a lot. We decided to list for transplant in October and have been waiting ever since, and then, in December, I couldn’t work as a nurse anymore. So I dropped out of my job, and I was hospitalized recently in February.

I had always loved science, and I was always a really good student with science, and my mother was a nurse. And I saw that it was an awesome profession, and you can do multiple different things with nursing. So, I just decided to go into nursing. I got my BSN, or bachelor’s in nursing, and from there, I worked as a surgical nurse for 4 years. And then, I decided I wanted to go back to nurse practitioner school to become a family nurse practitioner, so I moved out to Boston in August to go back to school.

It began to be really, really tiresome. I would get off from my shift, and I would be so exhausted that I couldn’t come home and cook for myself or I couldn’t walk my dog. It began to decline this past December and mostly in the winter, because every winter since I was diagnosed was super hard on me. I would either end up in the hospital with pneumonia or infections or whatnot, so I kind of knew that the decline was going to happen in the winter, but I didn’t think that the decline would be as drastic as what it was to lead to me being hospitalized.

I was always super active, and so when it became evident this December when I couldn’t bike or couldn’t walk my dog, it was a mind change. And you really have to wrap your head around thinking about transplant seriously, because there’s a difference between being listed and being out of the hospital and not having to wait for organs to live and having to be hospitalized and waiting for organs to live. So there’s that emotional, mental mind change that has to happen between those two periods of time.

It’s not really a depression for me. It’s more of a frustration. My family has always been really big into biking, and I have always struggled with biking. I have not been able to keep up with them for a long time, but recently, I haven’t been able to bike at all. So it’s more of a frustration for me to not be able to exercise, to not be able to do what I want. And there’s like that transition where you’re like, “I’m frustrated right now because I can’t do all the stuff that I want to do, and I’m not feeling great,” to, “Let’s get transplanted so I cannot feel that frustration.” And then, I know that transplant comes with its own frustrations of itself, but at least I’ll be able to breathe and exercise when I want and how I want and not have to worry about holding myself back because of my illness.

I learned early on that if I’m going to do this head on, then I need a lot of support, and that’s where the whole social media came in, because I learned that through reaching out, through social media, I could open my support system up to hundreds of people instead of just the people that I have in my phone or my family and friends back home. And it’s also nice to update people all at once, so I’m not constantly texting individuals, or everyone’s updated and that people feel a part of it.

I love my job. I cannot express to you how much I love being a nurse. I’m very adamant that no matter what it takes or how long the recovery period is or even if I have to wear a mask all day at work, I will be there for my patients and be there to help and advocate for them, because I really, truly enjoy it to my core. And it’s important for me to bring that gift to the profession, because I have that patient side. I can assure the patient and help the understand concepts from a different perspective, because I do have that patient perspective.

I’m a nurse. I like to see the variables. I like to see the outcome, and with transplant, there are no certainties. If a nurse says to me, “Well, we can’t do this,” then I know, because I’m a nurse, that we actually can do this. But most of the time, we work together as a team with our nurses and our healthcare providers, but it’s interesting, because it’s helped us and it’s saved us a lot of anguish.

My name is Camille Frede, and I am aware that I am rare.

Learn more about pulmonary hypertension at Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: #phaware 

Originally published: April 9, 2018
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