Carla Kinsey - phaware® podcast interview 577

She Went Looking for Answers and Ended Up Building a Lifeline

Before Zoom, before Facebook groups, pulmonary hypertension patient, Carla Kinsey, had only a voice on a phone line. That loneliness pushed her to do something terrifying: start a support group herself. What began as a need for connection became a lifeline for countless patients navigating rare disease.

My name is Carla Kinsey. I live in Rochester Hills, Michigan, which is a suburb of Detroit. I was diagnosed in 2013 with idiopathic pulmonary arterial hypertension. After four years of progressively worse symptoms to the point where I couldn't even sit up in bed without passing out, I finally got a diagnosis. After a few years, I kept looking for a support group in the area. When I reached out to somebody, they had just tried a support group for a couple of months and it had shut down. My doctor and the previous support group leader and the nurse practitioner at my pulmonary hypertension clinic all kept suggesting that I start up a group.

In 2015, I started a support group, and it's been in existence since then in one incarnation or another. Right now, we're mostly Zoom after the pandemic, because we did lose a few members, but we've also gained some new members along the way. In 2019, I actually took over as facilitator of the patients' telephone support group for the Pulmonary Hypertension Association. I always say that I get more from the group than I give to them.

I started out with a diagnosis of high blood pressure and was treated for that in 2009. The blood pressure didn't change at all with any medication, but my inability to breathe, especially on exertion, got worse. I was sent from one cardiologist to another. I saw seven of them. I can't do a chemical stress test, because I had a bad reaction and almost died from one. I'm physically challenged, so I can't do a treadmill stress test. So all seven of those cardiologists just looked at me and said things like, "Well, you can't do a stress test. There's nothing we can do for you. You are getting older and you could lose a few pounds. That would help."

I finally changed primary care physicians after four years of hearing those results from the cardiologist and people he was sending me to. Within five minutes of my new primary care physician, we were on a conference call with my pulmonary hypertension specialist, whom I've had for 11 years, and the cardiologist, whom I've also had for 11 years, said, "She doesn't need a stress test. She needs a heart cath."

Two weeks later, I had a right heart catheterization. The week after that, I had a diagnosis. Within a couple weeks started medication, and my whole world turned around. Just the fact that I could actually sit up in bed without passing out and having to pick myself up off the floor or whatever else I landed on. I could stay conscious. I could move about. I could actually get up and not only move around my house, it was just a whole new world again, because for four years I had been pretty much bedridden. It turned everything around for me.

I know I did the same thing everybody else does. I got the diagnosis. I came home. I went to Dr. Google and saw what the NIH had to say. My jaw dropped and I said, "Well, I survived four years. I'm still here, so let's pick it up and keep going."

It took me about a year before I went looking for a support group. Then I thought I needed to be in person, face-to-face with other people who had this. I knew there were many in the area, because of my specialist in his clinic. I went looking for a group and they had informed me that, "You know, that's funny, Carla. We just had a group. It went for a few months and then the leader had to let it go because she had family obligations and other things. We need to find a new group." I said, "When you find one, let me know." Then, they just kind of kept plotting and saying, "You know, Carla, you could start a group. If you want a group in the area, the best way to get one is to start one yourself." With their help, I put one together at the hospital where the clinic was located. We've been at it ever since.

It took me another year after I started looking for an in-person group. I think what it took me was having to have emergency surgery to have the fluid removed around my lungs and my heart that had accumulated, because of the pulmonary hypertension. I suddenly thought, "There have to be other people that are having these kinds of experiences." That was life-changing for me, that surgery.

I hadn't met one patient face-to-face up to that point. I had been on the patient support calls once a month that the PHA sponsors, but I had not met anybody in-person that I could actually just sit down and talk with. That's why I wanted to form a group. It was two years after my diagnosis. I went through everything, got the training and found a place to hold the meeting, and formed the local support group.

Although you know that there are other people out there because of things like Facebook and the patient calls and stuff like that... And we didn't have Zoom back then, so we didn't have virtual meetings. We had the telephone for one hour, so there were no faces. It was hard to put names with a voice on the phone.  To actually see people coming in who were wearing supplemental oxygen, who were dealing with the same thing, taking the same medications or different medications, finding out what they were going through, it was, I have to say, illuminating, but that's only because I haven't got a better word for it. It was really kind of freeing, because now I knew that there were all these different faces, all these different things people were going through, and they were still getting on with their life.

That gives you encouragement when you see other people. Because even though you tell yourself to get up every morning and do what you've got to do and get on with your life, it's different when you see other people going through similar situations and also getting on with their life in different ways. We all have that "new normal" phrase stuck in our head. When I saw people in person, then it dawned on me, new normal is not new normal. We make adaptations throughout our entire lives. When we start a new school, when we start a new job, when we have children, when we get married, we're always adapting. So why was this different?

I kept seeing people who said, "Well, it's different, but it's not different, because I still do this. I still do that." I'm not a person who, when they hear a diagnosis of pulmonary hypertension, they go home, look it up, and go, "Oh my God, 2.8 years from the onset of symptoms and you're dead." or, "Oh my God, I'm going to die." I am this kind of person that says, "Well, I lived this long, so I can beat this." But you still had to work at it.

It didn't seem like so much work, because I wasn't alone anymore. There were people that I knew, people I got to know, people I call friends to this day that I would never have met if it hadn't been for this disease. They're the people that I can call on a bad day and tell them, "I'm having a bad day. Blah, blah, blah." They don't say, "Oh, well, just get over it," or anything. They know what you're doing. They know what you're dealing with.

It doesn't really take anything special to be a leader except the fact that you want to be with other people who have similar problems. I mean, even though we all have pulmonary hypertension of one form or another, we also have different health problems. We could still sit and talk about those different health problems. Like I said earlier, I'm mobility challenged. There were people there that aren't challenged in that way, but they had other challenges. So we could sit and talk like with my friend Christy, whom unfortunately we lost in the early days of the pandemic. She and I could sit and talk about her Hodgkin's disease and my neural limitations because my spine is collapsing. We could sit and talk about it. Even though I don't have Hodgkin's and she doesn't have the neural problems, we still felt comfortable opening up about what we were feeling and what we were dealing with. That was because we were dealing with something that was common between both of us, which was the pulmonary hypertension. We were 35 years apart in age, but we became very close, very fast friends.

I think the first advice I would give somebody who's newly diagnosed, if they don't feel comfortable going to an in-person support group at first, because it can be intimidating... And I was one of those people that said, "I'm not a support group person. I don't want to talk about myself in front of other people." But I joined the patient support call. Most of the time I would listen, but every once in a while I would talk. Then, I decided I needed to be able to talk to people about my disease because of that.

But what I tell people if they're newly diagnosed is just join the patient support call. You don't have to talk. You don't have to partake. You don't even have to turn your camera on on Zoom. You can call in on the phone. You can turn your camera off. You can sit and listen until you're comfortable talking.

I know we have one person who joined our call shortly after she was diagnosed, just a couple of weeks after, and that was like three years ago, I think. She is now a support group leader, but when she first joined, she thought her life was over. That was it. She had this disease. It was terminal. She's going to die. She is so different nowadays. She laughs. She didn't laugh, she didn't even smile in the beginning. But now, she not only smiles, she runs several charitable groups, because she is retired, but she's gone out and run several charitable groups in her area. She started her own support group. She is always, always on the monthly call. She said she felt like she was not only a deer in the headlights, but like she was standing on the ledge and this group talked her down. She didn't say anything for the first three months, she just sat there and listened. But now, she's a whole different person. She's like she was before she was diagnosed, at least mentally and emotionally.

There are still months where I have to talk myself into getting the meeting set up, going to the meeting, whatever. But when I get there and when I leave, I feel so much better, so much more energized for having been with people. I mean, my sisters don't understand. They try. They don't understand. But the people who are dealing with the same disease, they understand. They know what your life is like. Even though you may be totally different, you may come from totally different walks of life, have totally different experiences, they know what it is you're going through, what it is you're dealing with that nobody else who hasn't had to deal with it can understand. That, I think, is why I feel better and everybody I know that goes to the group feels better when they leave.

My name is Carla Kinsey, and I'm aware that I'm rare.

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