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 but thought I was just out of shape. 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 and was, diagnosed with 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.
A lot has happened in my life since diagnosis. I have gotten married, traveled, took college classes for job retraining, and returned to work at a new job that I maintain today. I have learned a great deal over the years on how to manage my disease and still maintain a good quality of life. I have learned what my physical limitations are and what tasks require me to take rest breaks. For example, I love to work outside in my garden, a task that is very difficult for a PH patient due to the amount of bending over, position changes, and some lifting, etc. Fortunately, I am able to still do some gardening by breaking the task up into smaller ones and taking rest breaks in between and modifying the task if I can (sitting and pulling weeds instead of bending over). It might take me much longer to get a task done, but eventually I get it done and with a great sense of accomplishment.
Overall, my disease has remained fairly stable the past several years. More recently, though, supplemental oxygen has been added to my treatment for use with exertion and at night. Using oxygen has never been something that I have had to do, even when first diagnosed, so it has been an adjustment that I am still working through. However, I am determined not to let it stop me. I keep reminding myself,
“Where there is a will, there is a way.” Living with PH is truly life changing, but thanks to PH medications, having a good quality of life is possible.
I know that my quality of life would not be as good as it is today if it were not for Remodulin. In fact, I truly believe that Remodulin has saved my life.
While I am very fortunate to have responded so well to my medications, there are still those patients out there who are not so lucky. While we have made great strides in research and so many new medications are available, so much more work needs to be done. Ultimately, we need to find a cure. So, thank you for taking the time to read my story and for your support in “Phighting” this life altering disease.