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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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Melanie Brown - phaware® interview 334

Jul 21, 2020

Pulmonary Hypertension Patient, Melanie Brown discusses her complicated road to a proper PH diagnosis, counseling to cope with not being able to get pregnant and the power of giving back to the community by participating in PH trials & studies.

My name is Melanie Brown and I live in Portland, Oregon, where I was diagnosed with primary pulmonary hypertension.

That was the spring of 2006. I believe I was 23. I was basically just starting out in life and trying to figure out the world and one day I was walking up some stairs and I got shortness of breath and my heart started to race. I felt dizzy and I had to sit down. I knew at that point something was not right. I ended up going into the emergency room, because I passed out shortly after that and that's where my whole journey started.

With that situation, I was seen by a cardiologist in the emergency room. I was out of town, and so he told me that at that point I needed to go to my local cardiologist and have them start running some more tests. I remember that when I went to my local doctor, my local cardiologist, I explained my symptoms and what was going on and I left that appointment feeling like I wasn't being taken seriously. They basically just told me that it looked like it was asthma after doing some routine testing. At that point, I knew in my heart that it was more than just asthma and they needed to do some more testing.

From there, I had another appointment and I remember sitting in this doctor's office begging and crying for more testing to be done to me. There was just no reason for this to be happening to a 23-year-old that was fairly healthy at the time. From there, they agreed to do some more testing for me and I went on for weeks to do everything from CT scans, the EKG, MRIs, blood work, had a Holter monitor put on me where they did catch an episode of me passing out. At that point, they finally took me when I felt like seriously, and they ordered a right heart catheterization to be done.

When I went in for my right heart cath, I did not know for actually a couple of days after the test, what was actually going on. My family had actually been told before me and went to the doctor's appointment with me where I was told that I had this disease and that it was severe pulmonary hypertension. That is when they told me I had two to five years to live. At that point, you just don't even know what to do. I couldn't even cry. Everything was a complete blur. I was on my way home from that diagnosis and it finally just hit me, your life just changes in an instant. I just remember that I felt like this was it.

At that point, I decided that it was time to find a new team of doctors. I didn't feel comfortable with the team that I currently had, because I had to advocate for myself and fight with them to have more tests. I ended up finding a new pulmonologists and cardiologists that were actually educated with the PH disease and I went on to have two more right heart catheterizations, where they finally determined that I had mild pulmonary hypertension and that I would respond to the oldest drug that was made for this disease. It's a calcium channel blocker.

Their findings during my right heart catheterization determined that my pressure's dropped significantly when they administered the medication and so that's the treatment that they ended up putting me on and that is the treatment that I've been on this whole time.

After I met with the new team of doctors and we finally nailed down the actual diagnosis, it no longer was, you have two to five years to live. It was now you have a long life to live, but you have to be on this oral medication for the rest of your life. It's still a very scary situation to be put into, but then you feel very fortunate that you're in that rare class of PH patients where you get to have a fairly normal life. Every day you still feel like something is wrong, something's not right. You can't do the activities that some people can do. Again, you're very fortunate that you're in this situation and then you kind of find out that life still has purpose and you still have life to live. It's not the end. You can definitely go on and try to live a full life.

I was advised to not have children, So, that was a very difficult situation to try to comprehend and to try to deal with that. After years of counseling, I've come to the realization that's never going to happen for me and that I can get that fulfillment from my sister who has children and my stepchildren that I have.

Pre-diagnosis, I met my husband. He's seven years older than me and he had two kids. I never thought this was going to be my life, but I met a guy who I fell in love with and fell in love with his children and it almost felt like it was meant to be. They're now my step-kids because we got married years later. So, I'm fulfilled with that motherhood with my stepchildren.

I continue to work through the whole diagnosis and for the years after. I work full time as an office manager for a company that I've been with for 18 years now. Definitely, I feel very blessed and very lucky. I had spoken with a lot of people with PH that don't have this diagnosis and are not this lucky. In fact, my doctor only has two patients that are in the class that I'm in and I am one of them. I mean, I wonder why it even happened to me and I wonder why it hasn't progressed and I'm not on multiple therapies. I know it was caught fairly early. I definitely had to advocate for myself and fight with the doctors to have them continue to do more tests on me because again, they only thought it was asthma at the beginning and in my heart I felt like it wasn't that. I do feel like I got a handle on it fairly quickly before it caused irreversible damage to my heart and lungs and that I feel very fortunate for that.

I do believe that the medical community could be educated a little differently on this disease. [It] just feels like the doctors that I saw at the beginning did not know anything about this disease and they weren't educated on it, which then made me have to do several more tests prior to the actual right heart catheterization.

My advice to anyone going into the doctors that feels like something is seriously wrong is to advocate for yourself, fight for yourself. Definitely ask a lot of questions and if you feel like more testing needs to be done and ask them to do more testing, it's your life you're dealing with. You are the one that has to live with the consequences to everything, so definitely advocate for yourself and fight for your life.

I am an identical twin. I have an identical twin sister who currently does not have PH. She's been tested, but has absolutely no signs of PH. I know this kind of sounds crazy, but in a way I feel like this diagnosis was kind of meant to be for me. Just recently, my family and I participated in a familial study for PH. This familial study was done out of the University of Vanderbilt. They took my whole family and sent test kits out to everybody for blood work and a few other things. Then, we had to send them back to them. We'll wait to see what the study comes out with for the community as a whole.

For me, I feel like this is important just because of the rare situation where I have an identical twin sister who doesn't have it and I do have it. I feel like we could potentially make a big difference with this disease if they can just somehow determine why it presented itself in my body and not hers.

I went from the first right heart cath being told I had severe pulmonary hypertension to the second right heart cath being told I didn't have pulmonary hypertension to then the third right heart cath, where I was told that I did have pulmonary hypertension, but it was a mild case. It was quite the roller coaster of emotion and diagnosis in basically two months span. It was incredible. It was quite the journey.

I feel like I was put here to do something in life and I feel like this has kind of in a weird way given me a purpose to help others. I feel like I'm in a good position where I can travel if I need to to do studies and I definitely want to help the PH community and hope that I can be a part of more studies and have a nice long life to just be me.

My name is Melanie Brown and I am aware that I am rare.

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