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I'm Aware That I'm Rare: the phaware® podcast

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Graydon Cawein - phaware® interview 388

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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