Patient Comments: Pulmonary Hypertension - Share Your Experience

Were you or a relative diagnosed with pulmonary hypertension? Please share your experience.

Comment from: Tangerine, 35-44 Female (Patient) Published: December 16

I am 39 years old and have pulmonary hypertension. I also have a ventricular septal defect (VSD), tricuspid regurgitation, Hashimoto's and what seems like some mixed connective tissue disease. I have absolutely no physicians or specialists as they constantly give me the run around. My cardiologist 6 years ago told me that the VSD was gone and he was not sure what was causing my pulmonary hypertension only to tell me last year that he found my VSD again and that he didn't know what to do except wait and see what happens each year. It is very frustrating. I find the expertise and quality of care greatly lacking. I am worried as I don't know if I should be in the care of cardiologists and/or specialists, but no one seems too concerned. On a side note my maternal grandmother died suddenly at the age of 40 from reasons unknown, but she did suffer from autoimmune illness like myself.

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Comment from: Winnie, 0-2 Female (Caregiver) Published: February 26

My son was born at 31 weeks and only kept in his incubator for 24 hours as they said he could breathe on his own. While in his cot they had a monitor inside his bed and the alarm would go of if his breathing was affected. It bleeped often and I pointed that out to the nurses, yet they only took a look at his face and said he was fine. At home 4 months later, my son had heart failure and was diagnosed with pulmonary hypertension. I think if he had been given oxygen he would have been fit and well. I get so upset, as now his life is limited.

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Comment from: Billie, 65-74 Female (Patient) Published: May 28

I smoked for years and was diagnosed with COPD in 2010. This year, I was in the hospital three times before the end of February. I have been diagnosed with pulmonary hypertension and an autoimmune disease. My doctors aren't sure which one it is, but are calling it a connective tissue disorder. I am 70 and have always been very active and healthy. I am on some medication that is helping, and am able to do things a little at a time. Sometimes I have to sit down for a while, but I feel very strong, especially knowing that I can have a fairly normal life with help from my doctors, friends, and family. I just had to slow down from 100 to 10, but I am thinking positive and will stay that way.

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Comment from: Jamesluvslife, 35-44 Male (Patient) Published: April 04

I was diagnosed with pulmonary arterial hypertension in April of 2008. I had been living with severe breathing problems for a couple of years before. Initially, I attributed my problem to lack of exercise. I could barely walk 50 feet without gasping. One day, my legs blew up (swelling – edema). Finally, I realized it was something bad and went to the ER. They plugged me into an EKG told me my heart was enlarged. Next, I had to go to a cardiac hospital. They gave me an IV of Lasix and drained about 2.5 quarts of fluid. I started a regimen of Letairis, Revatio, and Lasix. I have rebounded remarkably. I can now jog a mile (with much effort), but am working on improving even more. My personal outlook is positive.

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Pulmonary Hypertension - Symptoms Question: Please describe your symptoms of pulmonary hypertension.
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