Life with Pulmonary Arterial Hypertension

“Live life with no regrets” has always been my motto.

Of course, the most important things to me are being a mother, wife and a teacher, and I love every minute of that. I remember and I would never forget.

I thought I had a cold and it just wouldn't go away. It just kept getting worse and worse and worse. I went to the hospital, and I was initially misdiagnosed with asthma. He would give me the inhalers and this, that, and the other and it wasn't working.

And I remember telling my husband, “Something else is wrong.“ I spent years getting tests, even a lung biopsy. Finally, I got my diagnosis of pulmonary arterial hypertension or PAH.

After I found out what I had, I went to the medical library. There was just a little paragraph and all it said, “a rare lung disease.” That’s all it said. And so, I just sat there for a while, in the library, just crying. And then, I just thought about it.

I need to change my life.

Several years later, a PAH treatment became available. The treatment my doctor recommended was prostacyclin-class medication. It was the only type of treatment available at that time for me. Now, of course, we also have other types of PAH medication available. Back then, the only way to take a prostacyclin-class medication was with a pump. Now, they are also available in inhaled and pill forms.

At first, I was hesitant. I didn't want to try something new, something different. But after researching, I talked it over with my family and we all decided to go for it. It gave me more hope, you know, than I had at the beginning. After my first treatment session, I remember feeling better. I breathed better. I started being able to do things. I started being able to bend over and pick up stuff, dress myself, comb my hair, go for walks. I enjoy what it gave me back.

Even though it was still limited, it still gave me back a life that I appreciate and I enjoy. I did experience some side effects like headaches, nausea, jaw pain and muscle ache. But I learned to manage them with the help from my doctor. My doctor mentioned that other side effects can include sight reaction and pain.

I focused on a lifestyle that included me eating healthy, changing my diet, cutting out salty and unhealthy food, walking, exercising, doing everything that gave me back my life. Getting my life back, it's just been awesome. I'm happy with the team that I have that worked with me to help me to get to where I'm at now. Getting back to working and being with my family is amazing. I'm constantly doing things and I'm going to continue to do things like that until I can't do it anymore, because I know how it is when you can't do anything.

And I'm able to see my child grow up. To see her graduate, I just stood there and cried. And, man, here she comes down and she hugs me and we're just standing there crying because of the fact me and her never thought I would be able to see her walk to get her degree.

And I was very thankful and grateful to see that. And I took a picture of me and her, and I took it to my doctor and gave it to him and told him, “Thank you for being on the team to allow me to see this.“

I know PAH is a lifelong condition, but I have a treatment plan that works for me and I'm sticking to it. If I had to live this life all over at the beginning, I would choose it again because it changed me. And I believe it changed me to the better.

I love who I am now, so I have no regrets.