Lynn Bouseman - phaware® interview 590

“Get Your Affairs in Order”: She Told Her Doctor She’d Be Back in 20 Years

In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist calmly suggested she might only have months. Lynn looked him in the eye and said, “No,” she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender.

My name is Lynn Bouseman. I am from Southern Illinois. I was diagnosed with pulmonary hypertension in 1994. My onset of symptoms was in 1990. It took a while to diagnose, as usual. When you're in your early 20s and you go to your doctor and say, "I'm short of breath, I'm passing out," they tell you to lose weight. I just had had my daughter, Kara. "Oh, you're just getting through pregnancy," and things like that, so they don't really take you seriously, until the pulmonary hypertension had gotten so severe that it did damage to my heart.

I went in for a physical for a new job, and the guy that was doing the physical said, "Has anybody ever told you that you have a heart murmur?" I said, "I don't have a heart murmur." He said, "Yeah, you do, we need to get this checked out." It just snowballed, a hard crash to the world of pulmonary hypertension.

What's so great about today is there's so much information out there that can be scary, overwhelming and stuff, but there is more information. In 1994, my mom was a nurse, so I started pulling out her physician's desk references and started looking it up. There was very little in those books about it, but what was in there was terrifying. I was hoping I had secondary, (pulmonary hypertension). I was hoping something could be fixed, but now, I have what they called, at that time, was primary pulmonary hypertension. Now, they call it idiopathic or PAH. It was a crash course in pulmonary hypertension. The internet wasn't even going that strong yet. It was just a no man's land of information.

I did get the job, but I didn't work very long, because my symptoms were getting worse so rapidly that I stopped working pretty quick after that. I was in college, too. I had two young daughters, so I was exerting a lot of energy, also, at the time. It was scary. They referred me to a cardiologist in Evansville, Indiana, to have an echocardiogram. The echocardiogram went right into a heart catheterization, and went right to me being sent to St. Louis to start trying to find a treatment. There were no real treatments for it. They tried Cardizem and different drugs they had, but Flolan was an upcoming drug that had been in studies for a couple years, but it was the first drug that was actually made for the treatment of pulmonary hypertension. I got on the tail end of that study. It saved my life. I would not be here today without Flolan. It really saved my life.

The first years were rough. They were really, really hard. I had to stop working. I had to get on disability. That's a challenge for anybody my age. When you look so healthy, and you're not, that's the biggest thing. You're not healthy, but you'll look it. People look at you and say, "You look good." They equate heart and lung disease with older people, not with young people. The drug really saved my life, but it took a few years. My pressures were over 100 when I was diagnosed. My doctor told me to get my affairs together. He knew I had young children. They had sent me to St. Louis. I saw a pulmonologist there. He said I really needed to get my affairs in order, because best case scenario was three to five years, but he said with how high my pressures were, I was looking at months. I looked right at him and I said, "Yeah, no, I've got a three and five-year-old at home. I'll see you in about 20 years, still." He told me, he said, "Good." He said, "That's the attitude you will need to survive this disease, because if you don't go in fighting, you don't have a chance."

My youngest daughter is 34 and my oldest daughter is 36, and I have grandchildren now, but back to that time, it was overwhelming. I can remember at times just sitting crying, thinking, "Who do I give my children to?" Just thoughts of not being there for them. Then, I would just kick myself in the butt and say, "No, this attitude is going to send you right down that way. You need to make sure that you just keep positive, keep treatment." I'm religious about doing my medication. I don't miss a dose of medication still, to this day. Sometimes, I set my phone now, because I'm getting older and forget what time it is or get too distracted. When I was on Flolan, that was a lot. That could be overwhelming on its own, because you mixed all these vials of medicine. I don't remember the nanograms per minute or stuff. It's been way too long, but it was 13 vials of Flolan I was mixing up, a day, at my highest, but it knocked my pressures down, gave my heart a chance to relax and start working again correctly, because I was in right-sided heart failure when they found the disease.

I think it took me about five years to really start feeling better. I gained a lot of weight, because I was so inactive. I didn't feel well, and just getting myself back into groove of life, about five years, but when I hit 30, I started doing a lot better. A lot of people I think are so overwhelmed when they're diagnosed because you do feel so bad, and you think, "How am I going to get out of this? How am I going to feel any better?" You've just got to keep muddling through it and staying strong. Move when you can move, sleep when you're tired, and just keep fighting this disease.

I wish everybody had the successfulness I did with it. I don't know why some do, some don't, but there's so much more out there today to treat this. Currently, I take Adempas, Opsumit, and I started Winrevair last January. I'll have little hiccups along the line. My doctor's very proactive, and I think that's how they are with it now. They don't let pressures get a little higher and then start treating them down. I think, they see them creeping now, they knock them back down, and there's options to do that.

I was just determined that I was going to see my children grow up. I was determined that I had a life to live. For a while there, I was really cautious. It seems like I didn't enjoy life, for the longest time. I was just like, "Oh, that might make something worse," or, "Don't have that glass of wine. Don't go fly. Don't do this. Don't do that." I didn't live, for a while, so mentally, I had to get through that, too. There is a lot of mental aspects to this to deal with, and not get depressed. I had a very supportive family. My mom was absolutely the best. I needed a lot of help with my kids. There was one time I was in the hospital for a whole month, and without the support system I had, it would've been a lot harder to navigate this disease.

Dr. Keller's office is probably the first place I met another person with pulmonary hypertension, because he would see his PH patients on certain days. I found out one was from El Dorado, Illinois, which is not very far from where I live. The disease is so rare. You're not going to go down the street and find somebody that has it, and meeting other patients does help. I remember, when the internet first started coming up, you'd have chat rooms. You could go chat with people. I can't think of her name, but she and a few other women with pulmonary hypertension started the PHA chat groups and stuff like that. You'd just log on and talk back and forth. It's not like what we have today by any means, but it did help. You could ask questions. "How do you do this? Have you heard anything about this?" They would have doctors listed for different parts of the country where other people were from. That was really helpful, but that was a couple years into my diagnosis, before where I could log on and see what was going on in the world.

There was nothing. You could go to the library, look up information, which once again was just medical, and it was terrifying. It wasn't what somebody was living through. It was the horrible prognosis and the limited treatments, and just horrible information, not anything positive and upbeat to keep somebody going strong. That was probably the worst part of it, just not knowing anybody else that was going through what I was going through. You want to know something, or if you want to see how somebody else is doing, you just pop online now and you can find so many resources. Back then, there was nothing.

Here I am today, and I live a full life. I love riding my bicycle. I love traveling. I love spending time with my family, my friends, my grandchildren. The developments that have come along the way in the last, I guess it would be 30 some odd years, has allowed me to do this. It's allowed me to live the life I live now. My biggest advice is, if you feel good, go do something. Don't live your life in fear of this disease. Live your life. I mean, it's going to be your life. Just continue as best as you can. Do you. Do you as best as you can with this disease. I'm looking forward to the next 30 years, because I have no desire to go anywhere. I love life. I know this is something I have to deal with, but I will continue to.

My name is Lynn Bouseman and I am aware that I am rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [e-mail] Like, Subscribe and Follow us: www.phawarepodcast.com.