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Patient story

Sue Crowder

Hi! My name is Sue Crowder and I have secondary Pulmonary Hypertension caused by Limited Scleroderma. I was diagnosed the end of April, 2008. But first I will tell you a little about myself. I am 53 yrs. old, married with two grown children, four grandchildren and a new grandson due in January. Before diagnosis, I worked at a factory where rope was made and distributed. Now on to my PH story:

In February of 2008, I began experiencing shortness of breath whenever I went upstairs, did laundry or walked from my car to wherever. It would last for several minutes until I rested. This was unusual for me so I went to my Family Physician who gave my inhalers for asthma. Two months later I was still short of breath on exertion, so he decided to do an echocardiogram and the results were PH. From there I was sent to a PH specialist who did all the expected tests including a right heart catheriztion which showed pulmonary pressures of 110. Normal pressures are 25-30. So I have severe pulmonary hypertension. Tracleer was started in July but was stopped for two weeks because of liver enzyme elevations. I have restarted it again at 1/2 dose for a couple of months and go from there. I have improved to where my heart is back to normal size and function. I no longer have SOB, and generally feel pretty good. With the treatments available now and more forthcoming in the near future, I feel confident I will be treated successfully. Thank you for reading my story.

I live in Ontario, Canada.

 

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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.