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Patient story

Anonymous

I was born (1968) with a heart defect which was corrected to the extent possible with open heart surgery at Detroit Children’s Hospital at the age of 3. A Detroit cardiologist (Dr. Green) watched over me until I was a teenager. I grew up with some limitations on activities including no contact sports, but was allowed to run around with other kids, water and snow ski, play baseball and basically enjoy life. Eventually I had to give up all sports as I entered my college age because of a lack of energy or what could also be described as shortness of breath. A catheterization test showed elevated pressures in the lungs somewhere around the age of 19.

Here is where my father and I question when the PH diagnosis occurred. According to my father, Dr. Green did note elevated lung pressures during my last catheterization test when I was around 14 but the term pulmonary hypertension was not used. Dr. Green indicated there was a group of patients suffering from the same condition that they were watching, but had no cure for. So I am not really sure if the term was attached before my catheterization at the age of 19, but it’s fair to say that I have been living with this condition for at least 20 years. There may be some number like less than 200 hundred of us were diagnosed in the middle 1980's but I don't have the study to reference to. One memory is the study I read at age 20 that stated I had a 95% chance of being dead by 25 and I am not likely to forget anytime soon.

After the catheterization test (age 19) my cardiologist (Denardo) sent me to the University of Michigan (UM) in Ann Arbor. Michigan's elite hospital didn't have an answer. They suggested the possibility of a heart lung type transplant, but had zero experience with this back in the late 1980's. My local cardiologist suggested contacting a surgeon (Bart Griffith) at the University of Pittsburgh Medical Center (UPMC) who handled high risk patients after UM could not help. He had this contact from when he went to medical school.

UPMC evaluated me in 1991, put me on a transplant waiting list and 1.5 years later in 1992 I had a single lung transplant. It took me six weeks to get out of the hospital after the surgery and I was right back in for another two week visit. Over the years the lung was in "chronic rejection" mode. It was minor or microscopic but continuous rejection of the lung. There was a new treatment developed by MD named Aldo Lacono called "inhaled cyclosporine." So in combination of the meds took in morning and night a breathing treatment of meds allowed the drug to get right inside the lung and after a month or two it wiped out the chronic rejection.

So I have had a single lung transplant for about 15 years and it would be a mild understatement to suggest that I am considered a veteran patient in Pittsburgh. The current lung UPMC specialist Bruce Johnson MD and his staff have a huge caseload of high risk patients who have ended up at Pittsburgh because other medical facilities can't help. He is in such demand that I literally had to stand up for an hour recently in the waiting room because all the chairs were full. But he handles them with the grace and charm of a saint. Oprah should do a show on him alone. Obviously I am a bit biased in my comments for Bruce, the nursing staff, and the entire University of Pittsburgh Center’s organization.

Like other patients with rare conditions I don’t like to be a burden on the system. I tried to give back my time since my transplant. There are a couple projects under my belt that I am proud to have worked on. About two months after the transplant a very wise nurse told me to go home, get to work, and forget about the transplant. She made it clear that if I sit around a worry about the medical challenges that I would never recover. Now that’s just a touch easier to say than do. But for the most part I have not stopped working since.

 

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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.