Patient story

"They (the doctor) said I had pulmonary hypertension and that I just needed to exercise more. I had no idea what primary pulmonary hypertension was so I continued to try to go on with life."

Sharon Smith

Sharon Smith

When I was 35 I went in to the hospital with right side pain that I had been having since I was 30. They had already removed the appendix and gallbladder. This time, they did laparoscopic surgery and removed a cyst from my right ovary. I did great they tell me and got out that day. Then the next day I called my mother in Texas and told her I was swollen all over and to call my doctor. She could not get me to respond right to her, so she drove one hour to me and said I was so swollen you could see the fluid under my eyelids. She took me to the emergency room and they admitted me, put in a catheter and gave me Lasix.

Sharon SmithThey tell me the next day that I got up and was talking to everyone. I'm a nurse and worked at this hospital, so everyone knew me. They gave me some pain medicine because I had surgery and I then went to the bathroom. I told my mom that I was taking my pants off because I had no output in the catheter. I bent down and then stood up, told my mom I was dizzy and then hit the floor. They did cardiopulmonary resuscitation, placed me on a ventilator and given less than 10 hours. I was not breathing on my own at all, but my family prayed hard and after three days I opened my eyes. I was then sent to a bigger hospital where a cardiologist did many tests. My d-dimer was high normal after surgery, but the computerized axial tomography (CT) scan did not show a blood clot. I was told it was pericarditis, an infection around my heart. After a week I was discharged home.

When I eventually went back to work I always felt tired and one day I was running to a patient in need, became short of breath (SOB) and almost passed out. I was readmitted to the hospital, a stress test done and was not good, so I was sent back to the cardiologist, who did yet another heart catheterization. They said I had pulmonary hypertension and that I just needed to exercise more. I had no idea what primary pulmonary hypertension was so I continued to try to go on with life.

It took three years and a different cardiologist to get to a pulmonary physician that did explain everything. I took Adcirca for three years and only this year after my last heart catheterization and feeling SOB did we have to add Tracleer. My pressure was only up to 78 on the Adcirca. I have been off work a month and a half I do feel better, but I still have bad days. I just learned last month about this website and am so happy to read and hear other PH stories. I live in a small town and don't know anybody else with this so this web site makes me feel like I am not alone when before I did, thank you so much.

Sincerely Sharon Smith


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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.