Friday, November 7, 2008

Mary's Story!

My name is Mary, and I am probably the oldest patient with Pulmonary Hypertension. But it doesn’t really matter, 8 months to 80 years, it is the same terrible disease. I began with the usual symptoms- fatigue, shortness of breath, unable to climb stairs, having to “take a break” several times while preparing a meal, doing laundry, etc. I have been to good doctors and bad. I was underdiagnosed, undiagnosed, misdiagnosed, etc. After six years I finally found a doctor who would listen to me—REALLY LISTEN—and also talk to me. After a right heart cath, he diagnosed me with mild pulmonary hypertension secondary to scleroderma. I have been on Tracleer for nearly three years and have been stable for the past year. I am still not able to do much, but at least I am here and watching my grandchildren grow up. My advice to new patients- advocate for yourself- no one else is going to do it for you. I also am a firm believer that we need better education for medical personnel, including doctors, so this disease can be recognized faster and patients sent to the proper specialists. I believe there must be many like me who are treated for asthma, copd, etc. who, if their doctors were only willing to take it a step further, would find they have pulmonary hypertension and obtain treatment. Pulmonary Hypertension is progressive, but it can be slowed and often stopped, and with research we will someday find a cure.


1 comment:

Annette said...

Mary, you are an amazing woman!! Thank you so much for sharing your story!
your phriend