Jul 14, 2020
Pulmonary Hypertension Patient, Kathleen Grady discusses her road to diagnosis, her optimistic view on her rare disease and how she navigates the impact of #covid19.
My name's Kathleen Grady, and I live in Cleveland, Ohio, and I
have pulmonary hypertension for the last 11 years. My older
brother, David Grady, has pulmonary hypertension. He was diagnosed
a year before I was, but how I got diagnosed was kind of a
fluke.
I had ulcers, and I went in to have them scoped and my oxygen
dropped. The doctor sent me to my doctor, because he was very
concerned. When I went in, it just happened to be a little medical
center. I was living in California at the time. If it had been a
regular hospital and I had to make an appointment, I would probably
be dead. But he had said, "Oh, can you pop down to see my friend,
the cardiologist?" I said sure because I didn't have to make an
appointment, because I was really busy at work, and of course, work
was much more important. I went down and he did an echo and called
me that afternoon, pretty much hysterical, because he was like,
"You have pulmonary hypertension. It's very severe," et cetera. I
had not put anything down on my sheet that my brother had it, so
they weren't even looking for it.
I actually went to a specialist in San Diego. They just put me on a
couple medications. David was living here in Cleveland and he kept
getting better and I kept getting worse. I eventually moved back to
Cleveland so that I could be treated at the Cleveland Clinic. By
the time I got there, I was in really bad shape. When they did my
right heart catheterization, I basically went from the table right
to heart failure ICU. Basically, if I didn't get the pump, I
wouldn't probably live like two more weeks.
About 10 years ago, I got the Remodulin pump, much to my dismay. I
really did not want it. I was not happy that it was going to make
such a huge change in my life. But little did I know that without
it, I would be dead, which I know, but it took a long time to be
okay with having it. They weren't really sure I was going to do
that well, because I was really very sick and my heart was really
failing at a high rate.
A couple of months ago, I ran into one of my old nurses. She works
in a completely different department and she hadn't seen me in a
long time. When she came out to see me, she couldn't believe it was
me. She was surprised I was still alive and I was looking good.
They basically consider me one of their miracle patients, because
my heart has regenerated itself. It will always show the symptoms
of pulmonary hypertension, but it's basically minimal damage at
this point.
I actually declined the pump when I was in the hospital. When I had
the right heart catheterization, they left in the tubing. My
jugular was still open so they could just plan on putting the pump
right in. When my doctor came in and said he wanted to give me the
pump, I declined politely. They had a family meeting out in the
hallway without me. My family basically said, "You have to get
this," and my doctor, he said, "I'm not releasing you from the
hospital." I really did not go into this with a good attitude. If I
could have checked myself out of the hospital, I would have, but I
could not.
At first, I was really sick. I had to reach very high dosage before
they could let me out. I couldn't even think about what the pump
was doing to me because I was so sick from the medicine. But then
when I got out, I had asked for help because people had to come
over and help me because I was still so sick from the medicine. It
was a struggle, I really learned to live one day at a time. I
really had to be grateful I was just alive. I knew that it wasn't
the quality of life that I wanted right then, but I knew down the
road it would be better. I knew that I could get better, I just had
to plug away at it.
Within a couple months, I was doing better. I mean, mentally, I
literally look at it as, yes, I have a disease, but I'm not going
to let it define me. That's what I struggle with from a lot of the
PH groups, because I think people, they wallow in their disease.
For me, I don't, I can't be that person. If you asked people who
really don't know me, if they couldn't see my pump, they would
never tell you I was sick. My friends know I have it and that I'm
sick, but I don't let it define me. I don't live in the fact that,
yes, I have a chronic disease that will eventually kill me, because
I can't live like that.
I choose to look at the positive things about what it's taught me,
how to be grateful that I have a different opportunity in life. If
I can look at life a little bit better. I don't take it for granted
as much. I'm sure I did when I was much younger. I look at it every
day that I have the opportunity when I wake up, I have a different
chance at making every day better. Part of that is because I know I
struggled in the beginning, but I refuse to let it just beat me
down. That's not how I wanted to live my life. I don't want people
to feel sorry for me or anything like that. If I don't want people
to feel sorry for me, then I can't feel sorry for myself.
When I saw my pulmonary hypertension doctor, we discussed how well
I'm doing. He said that I'm a lot different from most of his other
patients because I have a better outlook on my disease. I look at
life as my glass is full, it's not half empty ever. That motivates
me to do better in life. He knows that has made a huge difference
in how I've recovered from this disease.
I would say there are going to be good days and bad days, but the
good days are going to outweigh the bad days. Technically, try not
to look at them as bad days, I try and have bad moments. I would
tell somebody that I don't look at it as the extended period of
time, I really keep it you've got to focus on what you're doing
that day. I would tell the person to focus on how they can make
their life better. Sometimes that just means there were days that
it was hard to walk up and down the stairs, but I made sure every
single day I got out of the house. Knowing that it was going to be
really hard to walk up the ... I lived on a second floor, it was
going to be really hard to walk up and down those stairs, but even
if I did it once a day, it got me out.
I made sure that I kept in contact with friends and that even if I
had to ask for a ride to a place, I got somewhere so that I met up
with people who were not focused on the fact that I was sick. For
me, that's really important. I need to be around people who are
positive about life. None of my friends treat me like I am sick or
a victim. They just treat me as Kathleen. For me, I would tell
somebody, those are the people you need to surround yourself with.
I was really lucky that I already had those people in my life and I
didn't need to surround myself with necessarily people who have the
same disease as I do. I just needed to surround myself with
positive people.
That, I believe, makes the most difference in my life, continuing
on for the last 10 years, because when I have struggled or there've
been times, yes, that I've had to go up on the medication and
started getting sick again or I've had days where I really didn't
want to go out. I have those positive people who are going to say,
"It's going to be okay, but what can we do to help you? But you
need to get your butt out of bed and meet us for coffee. We're
coming to get you."
When it comes to the coronavirus, I am not necessarily the
excessive worrier about it. I'm not concerned too much that it's
going to make an impact on my life, because I do already take care
of myself. I take the precautions as necessary. I work part time,
and before they were closing down the businesses and stuff like
that, I reached out to both my doctors and asked for their opinion
on whether I should be working with people, et cetera, et cetera.
They both said just take your regular precautions as necessary. My
one doctor, he said, "Truthfully, I'd be more worried about you
sitting at home for your mental stability," because he was like,
"You need people." But even my PH doctor, he goes, "You're smart,
you know what you need to do." He goes, "Just take the necessary
precautions and live your life." Of course, then they shut down the
world. I'm not one of those people that is going to think, "The
person breathed on me, I'm going to die of COVID-19." I'm already
one of those people that has tons of antibacterial stuff and I
obsessively wash my hands. I already have done all the things that
we're supposed to do. It's just life continued for me. The only
difference is now I wear a mask out, when I'm out in public, but
that's about the only difference, because I didn't have to really
change anything. I'm not really a worrier. I'm not going to go out
and a group of a hundred people, but if I have to go to the grocery
store, then I go to the grocery store.
My name is Kathleen Grady, and I'm aware that I'm rare.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. 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 #phaware #ClinicalTrials