Karen Sawyer - phaware® interview 576

PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others

Pulmonary hypertension nearly stole Karen Sawyer’s sense of self. Instead, Karen rebuilt it through advocacy, education, and human connection, proving that no one should face a rare disease alone.

My name's Karen Sawyer. I joined the Pulmonary Hypertension Association right after I was diagnosed. It was around 2013. I connected with other PH patients. That really helped me, especially through support groups and mentoring on the phone so I could call someone that had my disease. I was really excited about that, because when you're first diagnosed, you're so in shock and lonely and scared. It was crazy. Then, you're in denial. I was in denial that I was sick, plus I was not feeling very well. I had cardiac arrest. That kind of caused my PH, but the PH was probably there a year before, but that's how I was diagnosed.

Slowly, after six to eight months, I started feeling better and getting in contact with another support group later who's my mentor now, that made a world of difference for me, because I'd never heard of the disease. I heard of pulmonary hypertension, but I didn't know what it was. I knew nobody. I knew of phaware® at the 2016 conference. I was asked to do the podcast. I had only had the disease for three years. It was very, very exciting. I was one of the original people to get interviewed. It's been ten years and a lot has changed.

I was on sub-q Remodulin for three and a half years. Then, I heard about the Orenitram (oral treprostinil) medication at the 2016 Dallas Conference. I came home and said to my doctor, "Can I be on this medication?" After adding some more medications, he agreed, and I've been on Orenitram since. It's been working out. I'm very stable. Also, in 2017, I became a support group leader. That's been wonderful here in Okemos, Michigan. I used to go to the Ann Arbor support group for three and a half years.

I needed one here in town. Ann Arbor is an hour away and my mom and I would go, but it was a five, six hour day, so I wanted one here. I kept asking my doctor, "When are we going to have a support group?" He would just say, “Soon,” which he didn't really know. Then, I was asked by the PHA if I was interested in being a support group leader and that you have to be diagnosed to become a support group leader. That was very exciting. I've been doing that for eight years now. I really enjoy it. It helps me and it helps everyone and the education which I love, and finding out the new pathways and new medication and how's everybody doing, and if you're seeing the doctor that you're happy with or if you need to get a second or third opinion. It's a huge tree root to other people that can be connected instead of being just isolated and not knowing what to do.

In the PH world when you’re first diagnosed, you just need that support, even caregivers and family members to learn how to navigate your side effects and just learning your disease and its huge educational platform. Plus, it helps support you getting to know other people that are going through the same thing you are. Everybody's body's different. The medicines react differently to everybody. Even certain foods I can't eat anymore and certain foods I can, but it's just interaction with that medication with the side effects are really hard to accept in the beginning, but you have to go through it.

I felt so bad getting used to the medicine and my mentor would just say, "You'll feel better in a little while. You'll feel better in a little while." That wasn't the answer I wanted to hear. I wanted to hear why I was sick, why it felt so bad to get used to the medicine. For me, over time, that I've learned is the medicines are so very strong that it has to go into your body very, very, very slowly in order for you to feel better later. That's why it took six to eight months to feel better after I was diagnosed. You just feel bad, you feel bad, and you have to increase your medicine. You feel worse, you feel worse. Then, all of a sudden you wake up and you're like this new flower like,  “I feel great. What is going on?” It's amazing and very, very interesting that that can happen. That was my experience. Being able to share that now as a support group leader is to help and learn and teach and bring people together for the support and the one-on-one. Even virtually, I do virtual meetings too, and that is great.

There are some people that can't go out to a meeting, they can't be interacting with people, because they have so many other diseases and it's too dangerous for them to be around people. There are a couple new people that started coming to my support group from other PH doctors in Michigan. They were told they had to get their ducks in a row basically, that there was no more help for them through that doctor. That they were ready to go. One of my original members, this man that was told to get his ducks in a row, the other member was buying a car from him. He was a car salesman. They started talking about their diseases and found out they had the same disease. The person that was buying the car from the man that was told to get his duck's in a row said, "Oh, you should try so-and-so doctor and get a second opinion."

He did and started going to the same man's doctor and he lived another five to seven years. He just passed in December of 2024. But how beautiful was that, the connection just by a guy buying a car and they became really good friends. He got on different medicine and the other doctor really brought them up to par. I have people in my group that go to different doctors here in Michigan, which is wonderful. But I always say it doesn't hurt to have a consultation. It doesn't hurt to get a second or third opinion to find the right fit for you.

I signed up for this because you can get very, very depressed and kind of in your own head and your family's worrying about you and your friends worry about you, and it kind of gets all heavy. When I decided to be a support group leader, I thought,  “Great. It's going to give me something to do, something to be excited about planning, getting drug reps and sponsorship.” It's all volunteer, which I enjoy. You get kind of an energetic happiness out of it.

I had never volunteered before in my life, so this was the first time and I knew I really needed it, because it would help me not get depressed. My mind was like, oh, we got to do this next month. Oh, we got to do this in a few months. It gives me the energy to keep going, plus learning different medications and just how to live a PH life that is going to be good for you. In 2017, before I became a support group leader, I was asked by United Therapeutics to become a mentor to talk to patients on the phone or through email for newly diagnosed patients that were on the same medication I was on. United Therapeutics asked me to travel and become a speaker at certain conferences throughout the states. That was really exciting and really scary at the same time, because I'm a retired hairdresser, so I was used to kind of doing stuff with eyeballs looking at me, as I should say. My first meeting that I spoke at was 70 people and I was like, "Oh." But it worked out great, because I helped coach you on what to say and the direction to go, but to speak in front of 70 nurses and doctors and share my story was very, very exciting and very fulfilling. I did that four different times before 2020.

I go to the doctor regularly. I had a right heart catheterization in January and then I just had to echo a couple of weeks ago. That will determine if I need stronger medication. Am I looking forward to that transition? No, because I know I'm going to feel bad, especially the first couple of days. But I know in the long run, after the amount of time that it takes to up the medication, I will feel better because that's what's happened in the past. And I just have to make sure that the day after my increase, I really don't do anything for two days because the side effects are really strong. But I'll go through it. It'll be okay. But am I looking forward to it? No. If I don't have to increase, that'll be great.

What I'm really excited for the future is to have different kind of meetings. I get really bored with the same old, same old. It's great that the drug reps do education, but there's docs you have to follow. There's rules that you have to follow. Sometimes, having a different kind of meeting like chair yoga or patient to patient or caregivers. Sometimes, I have a meeting to support the caregivers, which they need the support also.

Since I was diagnosed, my life has changed so much in the last eight years since we did this interview. I have become more confident. My spirit's stronger. I don't take things for granted anymore. Especially the little things. It is scary. There's no cure, but we're always hopeful for a cure. To learn and be able to share that, if you're not feeling well when you're first diagnosed, that eventually you could feel better if you are on the right medication. That thrills me at the support group meetings to have PH patients come and they were just diagnosed like two or three months ago and then eight months to a year later, the look on their face and their skin tone and everything is completely different and so much better. I went through it, but to see other people go through it is thrilling. To be a part of that and for them to share it with us and me, it's so rewarding being a support group leader. I love it.

My name's Karen Sawyer and I'm aware that I'm rare.

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