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.
Learn more about pulmonary hypertension at www.phaware.global Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate @antidote_me @accpchest #phaware @ClevelandClinic