Dawn Ogden - phaware® podcast interview 578

Three Generations. One Gene. A Rare Disease She Couldn’t Outrun.

Dawn Ogden has lived her entire adult life under the shadow of pulmonary hypertension. After losing her sister and watching her father battle the disease, Dawn learned it was genetic—and that she carried it. What followed was a lifetime of testing, fear, and impossible choices as she faced the reality that the same gene could shape her children’s futures.

I am Dawn Ogden. I am from Salt Lake City, Utah. I came to be aware of pulmonary hypertension about 30 years ago when my sister was diagnosed. Then, when we found out a few years after she passed away that my dad had it, we knew that it was genetically inherited. That's when they were testing for the genetic gene. It was a few years after my dad was diagnosed that my daughter was diagnosed, so I obviously knew I had the gene. I passed it on. I genetically tested all of my girls to see if any of them had the gene also. One daughter did have pulmonary hypertension. Then, my youngest daughter had the genetic gene. So, we were testing every year to see if there was any changes.

Everything was going really well until one day I hit my back. It just started where I didn't feel good. I was out of breath and getting a little bit weaker and not being able to go up the stairs. My mother had come over and took my oxygen and it was at 65. She's said, "You're going in," I went in and that's when I found out that I also had pulmonary hypertension.

Our process was they wanted to test my daughter Taylor to see if she did have it. It was confirmed. My biggest fear was that one of my children was going to get it and I didn't have a way to stop it. That's why I chose to genetically test my girls, because I would rather catch it earlier than way down the line when it was too late.

My daughter was diagnosed in 2007. She had a double lung transplant in 2009. I was diagnosed in 2020. It's hard, because you have to look at it, as it's your mortality that you're worried about and oh, how long do I have? Trying to just get everything in line. Then, I just worry with my youngest daughter, is she ever going to get it? My youngest daughter does have the genetic gene. We have been testing and doing echoes since 2008. We've had a couple scares where she's had to have three right heart catheters, just because there was discrepancies in the echo in the EKGs. They said, "Oh, do you just want to wait another six months?" I said, "No, I would rather know now so we can start something if it came to that she had it."

There have been so many new treatments that have come to exist since my sister was diagnosed. They only had one medication when she was diagnosed. She had to actually go from Utah to Denver to be put on Flolan. I just got put on Winrevair. I'm hopeful that with this one, it'll reverse some of the effects that pulmonary hypertension has done to my body.

When my sister got diagnosed, she and her best friend who they met because of pulmonary hypertension, they actually started the support group here in Salt Lake. We would go to all of those support group meetings. Then, my mom and dad would go still to them, but I didn't go quite as much until my daughter was diagnosed. Then, I started going again. I got out of it after she did her lung transplant. When she passed away, I stopped going. When I got diagnosed, it's only been the last year that I started going back to the groups.

Sometimes when we got drawn back in, it's more that you need that support. You need to know somebody else has this and they know how you're feeling. It may not be the same symptoms. One may be on oxygen, one may not be. One on IV therapy, one not. But you're still dealing with a terminal disease that you know you're not going to be here. I think that I try and I push that out of my mind. Sometimes, it just floods back. But with my friends, because they've been with me through all of them, because a lot of them we work together. So, it was from day one they were there with me, from my sister all the way up through when I got diagnosed, they were there.

There's a couple activities that I really enjoy. I really enjoy golfing. We usually try and golf at least once a week when I'm feeling okay and can walk up a hill and not have to really stop and take a breath and stuff. Another thing I like to do is hunting. It gets me out into nature. I put my oxygen pack on and grab my bow and hike as well as I can and just look for those deer and elk and just have a great time. I'm pretty excited, because we didn't get to do it last year. I'm waiting to get my disability papers in so that I can actually hunt from the car and/or side by side that I don't have to really maneuver around as much.

Sometimes it's a little difficult, but for the most part I can keep my oxygen level up and just rest when I need to. I have my husband with me all the time, so that's one good thing, because he's a really good support for, “Okay, I got to stop.” “Then let's stop.” Catch your breath, and then you just move on. That's one good thing about it.

I'm really optimistic for the future. I live every minute for every day now. You take nothing for granted. I'm excited about all the new medications that they've got in the works and especially for this new Winrevair. I'm really excited they actually got me on and starting that and see how it goes.

I'm Dawn Ogden and I am aware that I am rare.

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