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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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Jeanette Morrill - phaware® interview 243

May 3, 2019

May 5, 2019 (World PH Day) is the 43 anniversary of long-term pulmonary hypertension survivor Jeannette Morrill's PH Diagnosis. She discusses four decades of living with this rare disease. 

I am Jeanette Morrill and I'm a pulmonary hypertension patient.

I first started this journey back in 1976. That was the official diagnosis [date]. About two and a half years prior to that, I noticed that I was becoming short of breath. I was a Phys Ed teacher, so that was really out the ordinary. After another year had passed, I was working out with my basketball team. I was coaching and I fainted after a lap. Once I had that initial passing out spell, I couldn't climb two or three stairs without having to sit down or I was going to faint.

It wasn't normal for me to not be able to do anything to become so fatigued at doing nothing. The funny part about that was an orthopedic surgeon was the one who finally sent me to a cardiologist. Back in 1976, the cardiologist, I was lucky, knew enough to take an echocardiogram which, back in those days, it was a Polaroid camera that they took pictures with. He suspected, after seeing those what it was, but he wouldn't tell me for sure. I was lucky again that he knew to do a right heart catheterization. That's when, May 5, 1976 I got the official diagnosis that I had pulmonary hypertension.

I just laughed because I didn't know what it was or what it meant. Then in my follow-up visit, with my parents with me this cardiologist said to me you have six months to two years to live. He told my parents to take me home and put my affairs in order. Then next 20 years was very difficult trying to adjust at 23 years old, that I had only possibly six months and it was devastating, obviously. I did get through it, with support, but then the cardiologist who had kind of given up on me left the practice and a young cardiologist took over and he took my case. He said to me, "I won't give up and I will work with you as hard as I can for as long as you want to." He called people all over the world trying to figure out if there was anything else that he might be able to do for me.

There was nothing. There really wasn't. He was doing everything possible. Then he went to a conference in 1980 and he found out that Procardia was just being approved or going through the process of approval for use as a heart medication. One of the things that he learned was that it reduces pressure in some patients. At that point, I really literally was on my death bed. I couldn't walk. I was bedridden pretty much. He came back, and I was in the hospital. He came back and he said, "Are you willing to try this?" And of course I absolutely said, “yes.” It was unbelievable.  Within two days, I was up and walking the length of the hallway in the hospital.

He obviously saved my life. I was able to back to work for 15 years. Then in 1997, I got pneumonia and then I got it a second time and Procardia seemed to stop working. That's when I went to Columbia Presbyterian to see Dr. Robyn Barst, because Flolan had just become FDA approved. She immediately put me on that and saved my life. Really again, for a second time. She told me I had to get done working at that point, so I retired for a second time.

I pretty much have been called the history book of the disease by my now Dr. Joel A. Wirth. I've been on all the drugs that came along. Tracleer and then liver enzymes made me stop that. Revatio came along, I was on that. I still am on that, as a matter of fact. Then we added the third pathway, Opsumit, [recently]. So now I'm on Remodulin, and Opsumit and Revatio and I still have Procardia because they said if I reacted to it that sharply then they wanted to keep me on that, as well.

I really have not been able to get into any clinical trials because early on there really wasn't for me to be involved in and as soon as I got on Flolan, I haven't been able to find one that I could get into because I'm already on IV therapy. The thing that I find very impressive is the progression. When I was first diagnosed, I never met another person for 20 years, or spoke to anybody. I lived in a small town of 100 people in rural Maine so I never, ever saw anybody or talked to anybody.

Loneliness, and isolation and just wondering how did I get this disease. One out of 2 million people at the time. Now, I've been coming to conferences since 2002 and I was given the outstanding PH Award, and I cried when it was given to me because I would never have seen 1500 people in a room talking about PH and collaborating as much as I saw. it just raises your spirits and gives you the confidence that I'm going to see the cure, I'm going to live to see the cure for this disease.

Every time I come to conferences, the same thing happens, you get inspired. I've traveled all over the country as a peer mentor telling my story and trying to raise awareness. I have a golf tournament every year and [I] try to raise funds. I try to encourage other patients to tell their story because they have to pitch in and get their faces out there so that awareness can be raised and this disease will become not that rare disease that it was back then. People will know what it is instead of trying to tell you that it's blood pressure and they have it too.

I can tell you I've had many situations where I've seen people who have just become newly diagnosed and they're scared. They're afraid. The first thing I say to them is I've survived for 43 years and you can see, either the tears come or they give me a big hug. I’ve said to a lot of people, I find out what they're on for meds and if they're not on the IV ones yet I say to them, "There's so much hope for you because you haven't had to start the big guns yet." Those are in the background. They are there for you if you need them. I know that I'm making a difference.

Because I'm making a difference, it helps me so much to continue on and be brave enough to tell my story. That's been a hard thing to do. The first few months, year even, I was so lost and not being able to find my way. So now I've come to that point, many years ago, that I stopped feeling guilty, because guilty is a wasted emotion. You're wasting energy that you might not have so I've really learned to stop feeling guilty.

The next thing that I think is so important is that there is hope and that there will be hope. I get up every day and I just make myself, I don't care if it's one of those days where I want to stay in bed. I make myself get up and set one goal. Even if it's making my bed, that has to happen every day not matter how I'm feeling. I do have ups and downs a lot of the days, but I just try to take every single day, make it important.

I'm Jeanette Morrill and I'm aware that I'm rare.

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