Oct 25, 2022
In this episode, pulmonary hypertension patient and Stanford's Race Against PH 2021 Adult PH Courage Award recipient, Graydon Cawein, discusses his long road to his rare disease diagnosis, survivor's guilt, and the importance of finding an expert treatment center.
Don't miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford
My name is Graydon Cawein. I live real close to Stanford in Redwood City, California. I was diagnosed in 2010 when they put me on the Remodulin pump. I'd be dead a long time ago if it wasn't for the Remodulin, no doubt about that.
I’ve been doing all right for 12 years now that I've been on the
pump and some other meds. I do all right. It's not like when I
first got sick. It took about 14 months going to County Hospital
before I got sent to Stanford and before pulmonary hypertension was
ever mentioned. They sent me over to Stanford and they did the
right heart catheterization and immediately said, "Yeah, you have
pulmonary hypertension."
I felt like I was getting old. Shortness of breath real quick. It
got to where I couldn't walk 10 feet without stopping to catch my
breath. That's what got me to the emergency room. Like I said, it
took County Hospital 14 months to send me over to Stanford.
I just kept thinking I was out of shape, getting old, because I was
like 55 when I was diagnosed. Then I blacked out one day from a
sprint down the aisle in a Home Depot. I started getting dizzy and
just blacked out. That's what got me to the hospital, because there
was no explaining it.
The edema started my legs and that's what got me concerned. At
County Hospital, I think they did every test you can imagine and it
still would be like, "Nah, we don't think it's that. No, it's not
that," or, "Let's see. We're going to do this test."
County doesn't do things as fast as Stanford, so it was close to 14
months. Then the pulmonologist at County said that I might have
pulmonary hypertension and that they were going to get me a
referral to Stanford. I went over to Stanford. They did the right
heart catheterization right away and said, "Yeah, you have PH."
I'd never heard of it. I didn't know what it was. I don't know, it
didn't bum me out or nothing. I've always had the attitude, "It is
what it is." If it's something I can't do anything about, I'm not
going to worry about it. I slowly became aware all about PH, just
naturally being that I have it.
It hits some people pretty hard. I consider myself really lucky.
Sometimes I even feel bad because I'm not as sick as all the people
I meet at Stanford. I do all right. I go out and I mow the lawn. I
can't work. It stops me from doing too much physical stuff, but not
too bad. I really can't complain. I still have the pump and there
are two or three oral medications I take.
When I go to the clinic, I'm sitting in the waiting room and I see
other patients in there with PH and they just seem to be a lot
sicker than I am, having a lot rougher time of it. A few of the
people I've met there have passed away since. Just sitting around
like this, you wouldn't even know I was sick.
Sometimes I just feel guilty. They're so sick and they have the
same disease and people are dying, I just feel a little bit bad
about it. I feel like, "How come I'm not so sick?" Not that I want
to be.
At first, they were talking about a transplant, because the
original prognosis, they said, yeah. I think at that time, the
average was like five, five and a half years people survived after
the initial diagnosis. I've gone through the whole team over there:
Dr. Zamanian, Dr. Kudelko, Dr. Spiekerkoetter, Dr. Perez, Dr. Sung.
They're all great people. They really are.
As far as getting sick, going to County Hospital and then going to
Stanford, I compare it to like, if you're going away on a trip
somewhere, taking the county bus is County Hospital and taking a
private jet would be Stanford. I mean the difference is that much.
Everybody over there is great. They really are.
I've done like five or six clinical trials. One of the clinical
trials I did was called DynAMITE. They gave me an Apple watch to
wear. I had to do a six-minute walk test every day using the watch
and the phone and it transmitted the info to them. But I'd go into
the clinic once in a while. They were just trying to see how much
change there was in my abilities to walk the six minute, keep time
of it, every day; as opposed to when I go into the clinic every
three or four months.
They've gotten me very stable. And I think that's the first thing
they look at when they want to do a clinical trial. They want to
know that you're stable on the medication you're taking now before
they start giving you something different, then they won't know
what's changing what. I would definitely say do them. Everybody
should. They wouldn't have the medicines they had now if people
didn't do clinical trials, right? Somebody's got to do it.
I've never really gotten as sick as most of the people get with
this. I'm sure it's to come in the future. I've never really been
that sick. I've always gone there myself. Nobody's ever gone there
with me. I don't have a caregiver. I haven't needed one yet. My
family's all on the other coast. I've pretty much always been that
way. I’m a very solo person. Been married once, that lasted two
years. But now I've always pretty much been a loner, if you want to
say it that way instead.
If you're a parent, your kids are everything and that and that will
motivate you to do more. You'll fight harder. In the beginning,
when they wanted to doing all the testing they needed to do for
transplant, I was 55 at the time. I said anything I really wanted
to do, I'd done by now. I helped one guy, somebody that I met at
the support group at Stanford. A guy named Mark that had PH. He had
the transplant and I was helping take care of him for the like
first three months.
He had a wife and two daughters. I could see where he was fighting
to stay alive to do it. I just never seen that much of a fight in
me, because I'm single. I have no kids. If my quality of life gets
that bad. It's just, "Okay, then I'm finished." Most people don't
think that way. Most people are married with kids and you got a lot
more to think about than just yourself. I don't have anybody to
think about but myself. You know what I mean? It is what it is.
With the transplant, I don't want to do it. It's too much to go
through. Give it to some young kid. You got extra set of lungs?
Given to some kid with PH. I think one year at The Race Against
PH, there was an 11-year-old girl there that a year prior had
the transplant and it brought tears to my eyes. It was like, "Okay,
that's who deserves it. She hasn't had a chance at nothing yet.
Give it to somebody that hasn't had a chance of life yet." That
breaks my heart, kids.
I didn't want to fight. I didn't want to go through the recovery
process. That doesn't look easy. It's a lot to go through. When
they were releasing Mark from the hospital after the surgery, we
were waiting for the pharmacist to bring him his new prescriptions.
The pharmacist walked in and says, "Okay Mark, we got 17 new
prescriptions for you." 17 new ones!? I take four or five and I
have trouble making sure I take those. But yeah, it's just too much
work for me. Too hard to fight, at my age anyway.
Since I've been going to Stanford every year they hold this race.
They hold it on campus. It's a nice course around the campus. I go
there, I volunteer, help out, do what I can. The Race Against
PH started in like 2001 and most of the pharmaceutical
companies have tents set up there with representatives. They raise
a lot of money. A lot of people show up and race. It's a good time.
You get to meet a lot of people. All the doctors are there. They
raise a lot of money for research. They do a lot of good.
I don't really race, because I volunteer to help out with the
registration or whatever they need help with down there. I've gone
for the last six years. To me it's just a way to give something
back. I mean, Stanford's done a lot for me. Like I said, I would've
been gone a long time ago. To me, it's just a way of giving back a
little bit. I'll be there. I can't say enough about the entire
staff over at Stanford. They're incredible, really incredible
people.
My name is Graydon Cawein and I'm aware that I'm rare.
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