Patient story

Lora Mausling

It was the summer of 1999. I was working 60 hours a week and raising a 12 yr old daughter and 2 yr old son. Walking into the building where I work I noticed one day that I was getting short of breath. By the time I would get to my desk I could not breathe. This just happened over night. That was a Thursday. I went home that evening feeling bad. I thought it was from working so many hours and I was just tired. Friday morning I got up with a terrible headache. Went to work and had trouble breathing all day. As the day went on I became very tired. Went home and was planning on resting over the weekend. It was the Labor Day weekend. Went back to work on Tuesday. Wasn’t feeling any better. I had worked about 12 hours that day. I had to go home. By the time I got to my car I could not breathe and my heart was pounding. I knew something was wrong. I drove to Urgent Care. They did an EKG and Chest X-Ray. The doctor came in and told me that he thought I had had a heart attack. So they called an ambulance and took me to the hospital. I was admitted to the hospital. The next morning I had a bunch of tests run. Pulmonary function test, Echo done. My doctor came in afterwards and broke the news to us. She told me she thought I had Pulmonary Hypertension. Of course we had never heard of that before. So I'm thinking hypertension - they are just going to put me on medicine and I will be fine. She told me that I had to see a pulmonary doctor right away.

So a couple of days later I saw the pulmonary doctor. He said he agreed with my doctor that it was pulmonary hypertension. I told him I wanted to get a second opinion. So off we went to another doctor for the second opinion. He agreed with my other doctors. So back to the pulmonary doctor we went. He set me to have a heart cath done. I’m still thinking they are just going to give me a pill and I will be fine. A few days later the pulmonary doctor called me at work. He told me I had to go to Cleveland Clinic right away. I was at my desk and my boss walked passed. He thought someone in my family had died. He said I was white as a ghost and he knew something was wrong. I’m thinking I cant be going to the Cleveland Clinic. Only people who are very serious and are dying go there. My mom asked the pulmonary doctor what would happen if I didn’t get treatment right away. He told her he would not sugar coat it that she would walk in one day and find me dead.

So then came the call from Cleveland Clinic. And my beginning with my awesome nurse Kathy Hague. She explained to us what would take place for our first visit. We were there for four days. That is when Dr. Robert Schilz came into our lives. He has saved my life. He talked to us about going in a clinical trial for Remodulin. We decided that we would do that. I was started on Remodulin November 9, 1999. Being in a clinical trial you don’t know for the first 12 weeks if you are on the medicine or not. I knew that I had to be on the medicine as a week later I was starting to feel better. We found out that I was on the medicine. It was helping me a lot just a lot of site pain. I was on the SQ (subcutaneous) Remoudlin for 6.5 years. Then I stared getting infections. At every site and I knew we had to do something different. That is when we decided to go on the IV Remoudlin. We went on the IV Remodulin on Nov. 11, 2005. I did not realize how much pain I had really been in until the switch and no more pain.

I had to quit working in 2000. That was a hard adjustment for me and my kids. I was approved for disability right away. It gave me time at home with my son before he started school. It was a year later that I met my husband. He never knew me to be well and he still wanted to marry me. He is a wonderful husband and caregiver. He goes way beyond what he needs to do for me. He is my rock and one of my biggest supporters. We live close to Cincinnati and the driving up to Cleveland was getting to be too much for me. So I started looking for a PH doctor closer to home. I found a wonderful Dr. at Ohio State University. Dr. Namita Sood. She is wonderful and only an hour away now. I have recently had to start oxygen at night and when I leave the house. It has been almost 8 years since I was diagnosed. I thank God everyday for the many blessings he has given me. God is caring me through all of this.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.