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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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.