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Patient story

Jim Jordan

by his wife, Nancy

My husband Jim was diagnosed in 2008 with PAH. Previously he had been told he had emphysema. He was put on oxygen 24/7 but the oxygen level in his blood never increased.

I learned of PHA through our daughter, who found their website when we were looking for any and all information about this disease. Jim is currently on Revatio, Letairis and Ventavis. His diagnosis was made when we went to Cleveland Clinic to seek a second opinion. It was through a right heart catherization that they were able to say with certainty, "you have PAH". We had never even heard of it until then.

I can't say enough about how wonderful they are there and how they worked so hard to find the right combination of drugs to treat Jim. He spent the entire month of August, 2008 in the hospital there. He was always a very active man who enjoyed golfing and working around the house, remodeling and gardening. This has been quite a lifestyle change for him and he has become very depressed at times. Currently we are going back and forth to Cleveland Clinic to see if he is a candidate for a double lung transplant.

My message to anyone with PAH, or caring for a loved one with PAH is hang in there, and never, never give up hope. It is always too early to feel hopeless, and it is never too late to hope. God bless.

 

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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.