I’m Aware That I’m Rare: Merle Reeseman (222)

The phaware® interview

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…