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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Nicole Reid - phaware® interview 246

May 14, 2019

Nicole Reid, RN discusses her pulmonary hypertension diagnosis, its impact on her nursing career and the importance of clinical trials.

My name is Nicole Reid, and I have pulmonary hypertension.

I was diagnosed in December 2015. For at least four years prior to that, I had been having a lot of vague symptoms. Things like dizziness and exercise intolerance, and I gained a lot of weight. I kept seeing doctors. I see ENT, I saw cardiology, I saw my regular doctor, all kinds of doctors, and they kept telling me, "You have asthma. You're just a little overweight. You need to work out more, and you're just getting older. I mean, after all, you are 36, so you could expect to have a little change." Then in October 2015, I turned 40 and I got married, and two weeks after my wedding, I could not walk up a flight of stairs without stopping, I was so short of breath. I was short of breath sitting on the couch.

So, I made an appointment with a cardiologist, the one who diagnosed me with asthma, and she came into the room after I had my EKG done and said, "If you weren't sitting here in front of me, I would have thought you were dying of a heart attack. Let's look at pericarditis as a possible diagnosis." So, in order to do that, in order to treat that, you have to go get an echocardiogram. So, she sent me for an echo. She called me that day at work and said, "You have pulmonary hypertension, and it's pretty severe."

Actually, I'm a nurse, and so I had heard of it before, and I was terrified. I'd heard of it and thought it was pretty much just a death sentence, and there was going to be no hope for me. My life was over, and I was devastated. Everything I had worked for, everything that I treasured and loved was being ripped away from me.

I went in for the cardiac catheterization the day after the echo. My pressures were very high. They diagnosed me and sent me to a specialty center at National Institute of Health to join a clinical trial, and also to join a registry there. They're absolutely necessary for any advancement in this field of pulmonary hypertension improvement, cures, or treatments. I think that people get scared about going into a clinical trial, thinking, "Oh, I'm being experimented on," and that you don't have any choices in the matter, but that's not really true. You can always choose to be in a clinical trial or to choose to stop it if anything makes you uncomfortable about it. They explain everything to you before you get started. Without people joining clinical trials, we wouldn't have the medications that we have today to improve our quality of life.

I think I'm really, really privileged being a nurse, because I understand the language that the doctors are using. I speak this language myself, and so I understood what they were telling me when they were talking about things like the medication classes and how they worked, and whether or not we should try something like an intravenous line instead of oral drugs. I also understood the meaning of actually taking better care of myself.

Before the diagnosis, I was working a lot of night shifts and all kinds of shifts, and not eating properly, not resting, no exercise because I didn't feel good, and I really was sort of heading downhill that way. I know it sounds weird, but in a way, the diagnosis was a blessing because it made me realize how short life is in that I really need to take really good care of myself in order to live my best life.

So, I started pulmonary rehab. I take my medicines. I'm very strict about a low-salt diet, and I actually get a decent amount of sleep every night. I'm not working myself to death anymore, and I have a really good quality of life. And I'm looking forward all the new things on the horizon.

So, if I had to give some advice to someone being newly diagnosed, I would say, listen to your doctors and do the hard things. You may not feel like getting up and going to pulmonary rehab every day, but it will help you and you need to push through it. Take your medications even though the side effects are terrible. They will get better, or if you talk to your doctor about it, they can help you manage those side effects better. Take good care of yourself, and don't give up. There's a whole new world out there, and research is coming along every day. You want to stay in your best possible condition so that you can take advantage of that research when it comes through for you.

My name is Nicole Reid, and I'm aware that I'm rare.

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