OUR JOURNEYS

Patient story

Jennifer Hayes

Let me start off by saying that I refuse to be defined by illness, but at the same it is illness that brings us together. After reading the stories of other PH patients, I see that none of us want to be here, but in that dealing with illness has given us a new sense of purpose, even if it is only to be well again.

I was diagnosed with pulmonary hypertension secondary to MCTD (an autoimmune disease) in Sept. 2006. I am 35, married and have two children. I am a professional singer and I am also going to nursing school. I don't have time to be sick! I was experiencing the same PH symptoms that we all have, but fortunately my cardiologist recognized the disease right away. Ever since then it has been at the least a part-time job managing doctors, treatments, and medications. I now go to Duke for my PH care, but I also have a great team of doctors here in the Northern Virginia area. I recently switched from Tracleer to Letairis, and I also take Revatio, Lasix, Aldactone, Rituxan, and various other meds! I am waiting to see some improvement, but I also don't feel like I am deteriorating rapidly either. I really do feel that everything that could be done for me is being done, but I am still frightened sometimes. It is encouraging to read these stories and to see the progress in PH treatments, and to know that so many of us aren't going to take this laying down!

What I am learning in school is helping me to understand PH better. I hope to work with other PH patients someday. I have done a lot of research on my own, so nursing school has helped me to be able to understand the medical journals. It is nice to have the NIH so close!

I am not glad that I have PH, but in some ways it has been a gift. I can't worry about little things anymore, and it is liberating. My husband and I feel as if it is us against the world. My kids are afraid of what may happen to me. (But not so afraid that they clean up after themselves to save me the aggravation! Those of you who have kids know what I am talking about.)We are part of a loving and supportive church family that continuously prays for healing for me. They carry me when I am too tired from dealing with this disease. My parents live on our street and I rely on them everyday. So, we are going to be okay.

As with most trials in life, we cannot do this alone. Thank you all for sharing your journeys. It has brought me strength and hope.

 

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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.