OUR JOURNEYS

Patient story

Jaimie Love

Jaimie LoveMy name is Jaimie Love and technically I'm no longer a PH patient. This terrible disease almost took my life last year. On July 1, 2008 I received a double lung transplant that saved my life.

I was diagnosed with idiopathic pulmonary hypertension on June 30, 2006. I remember that day so vividly. I had never heard of PH before and I thought it was no big deal—just something I would have to take some pills for. Well, after Tracleer and Flolan and about a million hospital visits I knew better.

Pulmonary hypertension changed mine and my family’s life in every way possible. I ended up losing so many friends, not going to school and just being completely depressed. I had no hope. With the support of the people around me and the people on the ph boards I found hope. I looked at life so much differently. So what people say is true: life really is short.

I eventually got too sick for any medication to help me and had to be put on the lung transplant list. I couldn't believe this was happening. I live in Utah and the transplant team there turned me down so I had to move to Seattle and live away from my family while I awaited a double lung transplant at the University of Washington. I was at the very top of the transplant list and waited for four months until finally I got the call I had been waiting for—the call that saved my life.

It's weird how things happen at the exact right time. If I wouldn't have had my transplant then I would not be alive the following day. Now over a year later I am healthy and alive!

I know how so many of you ph patients feel. From the doubt the fear and losing all hope. I want to tell you to hang in there and that there is hope. We all got dealt a nasty hand but we can all handle it. Things will get better. Pulmonary hypertension is where my heart is and my greatest dream is that there will be a cure found for it.

To all of you out there suffering from this awful disease, you are my heroes.

 

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NORD

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.