Terri Keplinger - phaware® interview 570

She’d Never Been Sick - Until a Rare Disease Hit Like a Brick Wall

Terri Keplinger went from healthy and unstoppable to fighting for breath after unexplained swelling and a shocking ER visit led to a pulmonary arterial hypertension diagnosis. In this episode, she shares how denial turned into purpose, and how she transformed her fight into advocacy, support, and a mission to help others get diagnosed before it’s too late.

My name is Terri Keplinger. I'm from Johnson City, Tennessee. I am a patient. I was diagnosed June 15th, 2021. It took me probably a year and a half to accept that I had a disease. I had never been sick in my life. I started swelling pretty bad. About 50 pounds of fluid later, I couldn't mow my yard. I was used to mowing my yard. I couldn't walk from my car to the front door of my workplace, which I was the manager of. A customer actually looked at me. She said, "I just want you to know I'm a nurse and you have something really, really wrong with you."

I shrugged it off. My family begged me to go to the doctor. I just had never been sick so I didn't think that there was really truly a whole lot wrong with me that I couldn't fix myself. For about a year and a half, things just kept getting worse and worse. Finally, my family said, "If you don't call the cardiologist," he was our friend, they said, "If you don't call him and get an appointment to see what's wrong with you, we're going to take you ourselves." I ended up giving him a call. I went to see him, and the next day, he called my work and he said, "Meet me at the emergency room within two hours." I said, "Okay." He said, "We'll talk about it when you get there."

I got there before him and the nurses were like, "Why are you here?" I said, "Well, I don't know. I don't know why I'm here. My cardiologist said to meet him here, and I'm not sure exactly what's going on." About seven doctors started filtering in to try to figure out what was going on with me. Finally, my specialist from Knoxville had come in. He said, "Oh, she has pulmonary hypertension." I had no earthly idea what that was, what meant. I thought it was a joke. I thought they were all kidding and it was a horrible, practical joke, to be honest with you.

Four days later, I get out of the hospital and they give me these list of things that I need to do and all these medications, and I've never taken any medicine in my life. It was all just really new. I was a gymnast growing up, and hiker, avid outdoors person, and they're telling me not to do a whole lot. It was just surreal. I couldn't wrap my head around any of it.

So fast-forward about six months and I decided I needed a second opinion, so I go to Cleveland Clinic and same thing. 10 days in the hospital there and numerous tests and they were like, "You have pulmonary arterial hypertension." I couldn't believe it. I couldn't accept the fact that was what was going on in my body. I came back to Tennessee and I go back to work, and in the meantime, my owners had asked me to step down from my manager position because they knew I would just die at the counter. I was broken-hearted about everything. The doctors had said, "Don't Google it," so I didn't. I didn't do any research. I was just blindly going through the motions of just taking the medicine and trying to keep these symptoms down from this disease that I have that I don't even know anything about.

I got back from Cleveland and I needed some more medicine. I ended up calling my original specialist whom I deemed that I needed a second opinion from because I just didn't believe anybody. I called him and I just apologized. I was like, "Look, I'm really sorry." He said, "I don't know how you feel." He said, "I couldn't imagine what you're going through right now, so we'll just forget everything from the past and we'll just move forward."

He had put a seed in my head about the support group because he is two hours away in Knoxville and he didn't have the means to have the support group here, so he had tried to make a huge support group between Knoxville and Johnson City area. He had just been such an awesome doctor, I was like, "You know what? I'm just going to jump in. I'm just going to do this. Let's just do this. I don't know anybody with this. I would love to talk to somebody that actually has this issue." That's how I became a support group leader. He had just made mention that there was a lot of people in the area that he wanted to reach out to but just didn't have the means. So I said, you know what? I think I can do that.

I started the support group here in the area, and we don't have many people, which is good. It's definitely given me a lot of different things, to be honest with you. Not only the friendship, but the camaraderie, the support. It's been life-changing to accept this and start to move forward in how can I help others? I've not ever been one to take care of myself, so to have to spend every day thinking about me, it's different. It's different. I feel selfish a lot, but having the support group and helping with people who have this, it's really helped keep me going. I've never had to deal with any sort of illness, and then to be smacked with this kind of illness, it was like hitting a brick wall.

I have a guy that I knew from high school and we got together about two years before I was diagnosed, and he has been an absolute rock. I know he was putting in my life for a reason. I used to question, why would this happen to me? Why did this happen to me? Well, now I know. It was all just to lay the foundation for everything to happen up to now. It's actually been really crazy. I didn't know why I had my children then and why did my daughter have her children then? Well, because I had to get sick later. I am at least well enough now that I can play with them and love them. My children are amazing. I have two kids and I'm very close with my family. They have been everything for me. I wouldn't be here right now if it weren't for them.

I just recently had to quit. I had taken over a store that was going bankrupt and I had built that up to a profitable store. It was my baby, basically. I was there all the time, I was working my hind end off. At first, I didn't think that it was out of love and concern from them, but later on, I realized that it was because I was just so angry. But they asked me to step down out of concern for my health because it's a very stressful job and they knew I loved it, and they knew that I wouldn't step down otherwise. Again, there, I got to go back to my original store and work with a gentleman who helped save my life, as well. I'll never forget those guys. They really cared. They didn't want anything to happen to me so they let me continue to work, but in an environment that if I needed to leave, they let me come and go as I pleased. If my body let me do three hours of work that day, then I could. If it didn't, I didn't have to.

So, it was amazing for about two years that I was able to work when I could and not if I couldn't, so I was very fortunate to still be able to do that. I've gotten a little bit worse, so I decided that it would be in my best interest to go ahead and quit. It's been different. Worked my whole life and to just kind of take care of me all day long is a bit different.

I ask God to speak through my mouth because I know I was put on this Earth to help people my whole life, and that's what I do. The day that I was told that I had to step down from my position, I was leaving for St. Augustine for my birthday. I go to St. Augustine, I was angry the whole week, even though it was wonderful. The last day, and I kept saying, "I just want to talk to somebody that has what I have." The very last day, I begged my guy to stop at the farmer's market, because I didn't want to leave. I knew when I went home, I would have to go to the sales job and I didn't want to do that yet. So, I was stalling as much as possible, and we're walking around this farmer's market and I'm just kicking rocks and stuff. I heard this woman say something, and I just blew her off.

The next thing I hear her say was pulmonary hypertension, and I whipped my head around and I said, "Excuse me? What did you just say?" She said, "You have pulmonary hypertension, don't you?" I said, "What? Yes. Do you?" She said, "Yes. It took me seven years to get diagnosed." It was so crazy. We sat and talked for probably two hours. I'm dumbfounded every time I speak with people about how long it's taken for them to be diagnosed.

One of my support group girls, her brother passed away last year, and they said it was from pulmonary hypertension but he wasn't diagnosed. It's now my passion to educate, educate, educate, because so many people are being misdiagnosed or taking forever to get their diagnosis, and they're getting worse and worse and could potentially die, and it's not right. I'm dumbfounded. I get it that it's a rare disease, but we've got to educate people so people will quit dying. It's horrible.

So my dream is to travel the country. I love rocks. I love rocks. They are just fascinating on how they're made. They're made with heat and pressure and time. Just with a small change in a mineral, it could make the craziest rock. It's amazing that the Earth makes that kind of beauty through pressure, heat, and time. It just blows my mind. We've been to Oregon and South Carolina. We've been in a lot of different places to dig for rocks, and I'm going to do this one day. It's going to be called Digging for Change. I'm going to travel around the country and my guy and I are going to dig for rocks, gemstones, minerals, and we're going to educate the United States on pulmonary hypertension and just travel around the country digging and educating, because it's imperative that people know so people can live and have a better quality of life. It has to be, it has to be.

My name is Terri Keplinger, and I'm aware that I'm rare.

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