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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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Merle Reeseman - phaware® interview 222

Feb 19, 2019

Pulmonary hypertension patient Merle Reeseman discusses her PH diagnosis and the importance of being seen by a PH specialist who understands the disease and can diagnose and prescribe the proper medication.

I'm Merle Reeseman and a pulmonary hypertension patient.

It was back probably in the late 90s. I wasn't feeling well, I was a very active person [who] went from this doctor to the next doctor. And one doctor says, "You need to see a specialist." I went to a cardiologist and he said, “whoever read this EKG, or echo, doesn't know what they're talking about. You need to go to the Cleveland Clinic.” That's where I went.

When I first went to the clinic, they said, “you have a clean body,” which meant I was not on any kind of medications. And would I mind trying to this and mind trying that. They went through a lot of trials, and I got to the point where they said, “that's it, you need to be on medicine,” because they first tell you [that] you have two to six years to live without medications. And too many patients don't hear the without medication.

So, my two to six years went to two to three months. And then they put me on the only IV medication that was available at the time. The only medication that was available at the time. And I was on that for about 10 years, and then we decided because of the distance from my home to the clinic, (which is two and a half hours), and only has what I call a 15 minute shelf life. So, I had to be put on a different IV medication. Now there are three IV medications. There’s 14 medications now available. And as I mentioned, there was only one when I was first diagnosed.

My one doctor said he's going to change Murphy's law to Merle's law, because if anything going to go wrong I would be right in the middle of it. And it's proven to be true. I just happen to be one of those people that if something's going to go askew, I'm there. I went for a right heart cath, and I had a fellow, not quite a specialist, but a doctor, and he went up through my heart for the catheterization, and he went up this much further. And he found an anonymous pulmonary vein return. Your blood goes from your heart up through your lungs, back down into the left side of your heart, and throughout your body with fresh oxygenated blood. Well, mine didn't. It came back down into the right side of my heart, which caused the right side of my heart to enlarge, which basically gave me the PH.

So, rather than having idiopathic PH, (and I always said I had to be an idiot to get it), I had a cause, a reason. So, I had open heart surgery, and they said I'd be in the hospital four to six days. Three months later, I was sent home. I could not walk, I could not do much of anything. Had rehab and everything at home for six months. Then I got out the door and went to PT and all that for another six months. So I lost a whole year there. But I'm here.

People think well a specialist is a pulmonologist, or a cardiologist. Sure, they're specialists for certain things, but they may not be a PH specialist. And that's the difference. We need to find a PH specialist who understands the disease and can diagnose and prescribe the proper medication. I mean now there's 14 medications out there with more on the way.

Years ago, I was doing some search on the internet, and the local TV station had a little thing, if you have some kind of a disease and would like to tell us about it, contact us. So I called, and I just wrote, I said I have this rare disease, they've told me I have three to five years to live. And I stopped right there. I got a phone call. I mean if you make it sound scary, they will call you. So, I had the TV reporter come. I showed them all my medicine, how I have to line it up, how I have to mix this, and do that, and everything. And I said, "Can I say this on TV?" And she said, "What?" And I said, "Well I don't want people to end up like me, with a hose in the nose and a tube in the boob." That went viral.

I want to leave you with an exert of a poem that I wrote. I used to be healthy, I used to be strong. I used to work most all the day long. And then it hit me without even a clue, I wasn't quite sure just what I could do. I saw many doctors, I had many tests, and then I was diagnosed with IPAH, and you know the rest. Now, there's three pages, and I'm not going to go through all that.

But that gives you an idea, because I was healthy, I was strong, I did work all the day long. But, you know, now I can't. You go from here to here in little or no time at all. And to some people it's overwhelming, they don't understand why, and that's when you need to ask your doctor, "Why? Why is this happening? What is this disease about?" And then learn as much as you can.

Now, a lot of people said they don't go on the [world wide web], well some people need to. But you have to get an updated version. Check the dates on anything that's on the internet. And last but not least, remember to smile, because smiles are contagious you see. And when you feel down and put on a frown, turn that frown upside down, just for me. Because smiles make us happy and will help us cope with having this dastardly pulmonary hypertension disease.

I'm Merle Reeseman and I'm aware that I'm PH rare.

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