Deanna Modzelewski - Since 2003
For as long as I can remember, probably since high school, I have always hated stairs and walking up hills. I was always out of breath by the time I got to the top. I thought I was just out of shape. Little did I know, that was not the case. There were other signs too. I played basketball in high school but always felt like I could never really keep up with the team. I went on to college. Walking across campus, I would get out of breath, especially walking up the small hills to the dining hall. After college, I had an apartment on the second floor. By the time I walked from my car up the stairs to my apartment, I was always so short of breath. But again, I didn’t think anything of it. I just kept telling myself I needed to exercise. That was in the late 80’s and early 90’s. Was this a sign of things to come? Did I have PH back then? I don’t know for sure and probably never will, but it sure makes me wonder.
Then in 1997, I had routine blood work for a physical. My blood work came back abnormal which then prompted months of doctor appointments and tests. Finally, I was sent to UPMC and diagnosed with liver disease and portal hypertension. I was monitored for those conditions and things were fine for a while, or so I thought. However, in March 2003, things started to go downhill. My ankles started swelling up, my blood pressure was skyrocketing, and I was exhausted all the time. I still thought I was just out of shape. Finally on May 1, 2003, I had my first Right Heart Catheterization at UPMC. The doctor looked at me and said you have pulmonary arterial hypertension. The cause was my portal hypertension and liver disease. At that time, there were only 3 drugs available to treat the disease, Flolan, subcutaneous Remodulin, and Tracleer. I was placed on subcutaneous Remodulin.
Fortunately, the drug worked and stopped the disease progression. Almost 11 years later, my disease continues to be stable. In that 11 years, I have gotten married, traveled, took college classes for job retraining, etc. Plus, I have been able to maintain a part-time work status for the last 8 years and currently maintain a household. I still have my limitations but I am truly thankful for what I am able to do. If it were not for PH research, those drugs would not have been available at the time I was diagnosed and I truly believe I would not be here today. Remodulin and PH research have saved my life.
Since I was diagnosed 11 years ago, great strides have been made in PH awareness and research. However, there is so much more that needs to be done. There are many more drugs on the market now and life expectancy for a PH patient is much improved. However, it is my hope that one day a cure will be found. Please support us in our “phight” to find a cure for Pulmonary Hypertension!