Patient story

Tami Trost

"I no longer stress over stupid things and I appreciate the gifts in my life."

Gratitude Journey

I won't say that I am grateful for having pulmonary hypertension (PH), but I am very thankful for the success of my journey. My journey began in 1997 when I promptly ignored my purple fingers. Fast forward to the slow development of other scleroderma symptoms (esophageal reflux and burst blood vessels all over my face). Finally, I couldn't ignore the day I tried to take an exercise walk in the winter of 2004 and could barely go a block without breathing heavy.

I was diagnosed quickly (thankfully) in February 2005 at age 37 with PH secondary to scleroderma. I panicked when I read outdated articles on the Internet. Luckily, found the PH Association bulletin board and started asking questions of other PH patients. I’m eternally grateful that I live in a major PH city and that I have the health insurance and resources to afford the best care. Had some difficult times where I couldn't breathe without oxygen and was exhausted all day. However, I remained thankful that I wasn't in any pain. I could still work full-time, and had a boss who accommodated my illness. I was also grateful that my family and friends did not let me define myself by my illness.

Throughout this journey I connected with the PH community periodically through bulletin boards and support groups and learned from my fellow PHers. Primarily, I’m eternally grateful for the encouragement to start and stick with exercise rehabilitation. I’m also grateful for the Remodulin users who walked me through daily living with a catheter in my chest. Sooooooo grateful for the benefits of Remodulin (my magic juice!). I now only use oxygen on exercise and I can actually exercise!!!! I’m still working full-time, I have more energy than I have had in years, adore my exercise rehab and have gained perspective on life. I no longer stress over stupid things and I appreciate the gifts in my life. I am so thankful that I have an illness that is treatable and that I have not had horrible side effects from that treatment. I want to encourage others out there to believe in your own strength and stay strong. You are not alone!!!!

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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.