OUR JOURNEYS

Patient story

Christine Williams

I was diagnosed with idiopathic pulmonary fibrosis in May 2009. I initially had to use oxygen and was a patient of a local hospital's lung transplant program. My condition stabilized 18 months later and I was no longer a patient of the lung transplant program. I continued to see my doctor for IPF. Sometime in 2012, I started to become short of breath but attributed it to lack of exercise. In the beginning of 2013, I contracted the flu twice and was out of work for almost 2 months! I knew something was wrong because my shortness of breath wasn't getting any better. After my scheduled PFTs, I was told that I needed to be on oxygen 24/7. An echocardiogram was scheduled for April 2013 and because of those results, I had a right and left heart cath in October 2013. I was diagnosed with PAH and cardiomyopathy. GREAT! I thought.... JUST FREAKING GREAT!!!! Another disease with no cure. I was sure I was cursed and going to die. I saw my lung doctor and she told me that while there is no cure, there is medicine I could take. I started taking Tracleer and after about three weeks I saw improvement in my SOB. I'm still on oxygen 24/7 but it helped me do simple things like take a shower, brush my teeth, get dressed, do minor chores without running out of breath. At my follow-up visit, the doctor still heard a slight murmur and said my heart was still working a little harder than she would like and added another medication (Adcirca). I don't feel any differently so I'm waiting for my follow-up to see if this combination of meds is working. I'm still in a fog that I have this disease but I'm trying to take it a day at a time .... sometimes a minute at a time. I have a great support system and I look forward to meeting and sharing information with others who have this disease.

Submitted 2014

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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.