OUR JOURNEYS

Patient story

"I was told that in order to survive I was going to need a heart and lung transplant. My thought was that if that is going to keep me alive, I’ll do it"

- Denise Payne

Denise Y. Payne

Hello there! My name is Denise Y. Payne and I would like to share my pulmonary hypertension (PH) journey with you. I was diagnosed with PH with scleroderma in August of 2009. I had never heard of this disease and did not realize its critical nature. Up until August 2009, I thought I had asthma because that was the original diagnosis given to me in 2008. I was being given all the medications to treat asthma but none of them were working.

In 2008, my job had moved me to Norfolk, Virginia. I found a lovely apartment in downtown Norfolk that was about a mile from the office. Since I lived so close, I walked to work every day--a mile to the office and a mile back home. Thus was great because it was built in exercise and it saved me a boatload in gas. I had been walking two miles a day with no difficulty until February of 2009.

The day was really cold and I was bundled up pretty well. I had a scarf over my nose and mouth to block the cold but my scarf slipped and I breathed in very cold air. It burned my chest a little, but I didn’t really give it much thought. About a month later I began to have some difficulty walking the same two miles I had walked every day. I went to see my primary care doctor and told her what was going on. She did an electrocardiogram on me and discovered an “abnormality” in the reading, so she sent me to a cardiologist. He ended up doing a right heart catheterization, but did not see anything abnormal, so he sent me to a pulmonologist. He had me do the pulmonary function test and a six minute walk. His initial diagnosis was that I had asthma. He prescribed asthma medications, but they did not work and after a year I was getting worse.

In 2009, I accepted a position in south Alabama and sought the help of doctors there. I actually found a gold mine for PH doctors. I was finally accurately diagnosed and started on a regiment of medication that was beginning to make me feel better. It was not easy though. I was put on furosemide, sildenafil, ambrisentan, mycophenolate and hydroxychloroquine. To complicate matters, the Scleroderma was flaring up. In 2010, I experienced congestive heart failure, pneumonia and a pulmonary embolism.

I was told that in order to survive I was going to need a heart and lung transplant. My thought was that if that is going to keep me alive, I’ll do it. In the meantime, I was referred to a super specialist that had a vast amount of experience with epoprostenol sodium. In July of this year a line was put in to my right atrium and I was started on room temperature stable epoprostenol. I can tell you that my quality of life has greatly improved. I have a physical therapist who comes to see me every week and he works with me on light weight training, walking on the treadmill and anaerobic exercises. I have visited the Mayo Clinic, University of Alabama at Birmingham, and Ochsner Medical Center in New Orleans, Louisiana for lung transplant evaluation and am scheduled to visit Cleveland Clinic and Indiana University Health in Indianapolis next month for transplant evaluation.

The specialists at Mayo recommended that I continue on the room temperature stable epoprostenol since I am tolerating it so well. It may delay the need for transplant. That is fine with me. From what I have read, there are strides being made every day to improve the quality of life for PH patients and new discoveries through research frequently. I want to beat this intruder and want to join those in the PH community to find a cure. I am very thankful for my relationship with God and the strength He gives me each day to keep going. Life is too much fun to give up prematurely and helping others is the best part of being on this earth.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

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.