Patient Comments: Pulmonary Hypertension - Symptoms

Please describe your symptoms of pulmonary hypertension.

Comment from: Sm7cb6, 45-54 Male (Patient) Published: March 21

I have pulmonary hypertension. I have been on rivaroxaban for 2 years. I get breathless walking short distance, putting shoes, or on talking on phone.

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Comment from: Samantha, 35-44 Female (Patient) Published: June 10

I'm 44 and I was diagnosed with pulmonary hypertension in 2011 during my pregnancy. I'm in the mid-advanced stage. For the first two years of it I felt horrible. I gained so much upper body weight. I couldn't walk from my bedroom out to my car without having severe shortness of breath. I would sweat so much it literally dripped off me. I felt like I was literally dying. My pulmonologist put me on a medication called Opsumit, Lasix, Coreg, and warfarin. And oxygen as needed. I feel so much better. I can do almost anything, just like I used to. I still need to lose the weight.

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Comment from: Winnie, 0-2 Female (Caregiver) Published: June 16

My son had heart failure at 6 months of age. He was born at 31 weeks, only kept on oxygen for 24hours. Send home at 34 weeks he struggled to feed, I spent hours feeding him. I feel so guilty because I thought he was not right, yet the doctor kept telling me he was fine. I knew he found it hard to breathe when feeding, yet doctor kept telling me he was ok. I took him to the hospital and was told he was having heart failure. He was diagnosed with pulmonary hypertension (PH). He's 2 and a half, was on oxygen for a year. Now only when needed, saying that seems quite often. He takes medicines etc., yet has never seen a doctor about his P. I just don't seem to get any answers, doctor says he doesn't have PH, so what does he have! Any time we fly he needs oxygen, how can he be sure my child doesn't have PH.

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Comment from: law, 45-54 Female (Patient) Published: February 11

I am a 45 year old female. I was diagnosed with pulmonary hypertension 2 years ago. I was diagnosed with emphysema when I was 37 years old. The only treatment I am currently on is my 2 inhalers. I have dizziness all the time; when I stand up, when I stretch or reach for something, when I pick something heavy up or if I hold my breath at all even for 2 or 3 seconds. I get winded and out of breath climbing the stairs, using the vacuum or making the bed. I have chest pain almost daily. I have insurance through work, but sadly I still cannot afford the expensive tests and medication that is needed. I would like to know what my life expectancy is. My doctor will not give me a straight answer.

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Comment from: friar120, 65-74 Female (Patient) Published: October 31

I have lived at 10,200 feet for 25 years. I was diagnosed with PH (pulmonary hypertension) several years ago. About 3 years ago I started having episodes of gasping air hunger with physical exertion, extreme lethargy and feeling my heart beats in the middle of my sternum and up into my neck and ear drums. This July I had 2 stents put in my right and left coronary arteries due to 80% and 70% blockage. 50% blockage was found in the other coronary artery in the back of the heart, but no stent was put in. I continue to have symptoms like the above despite having the stents put in. My problem is that the PH test shows up as only slightly elevated in Denver, which is only a mile high in altitude. I live at 2 miles high elevation in altitude and can't get a doctor to "look at the patient" rather than the test results at a lower elevation. I also have vertigo, swelling in my legs and weight gain. I have found that crashing lethargy happens when my oxygen is in the lower 80s and improves when I breathe oxygen at 2 liters. I have also been diagnosed with heart failure. I probably should be on medications, but that won't happen until a doctor recognizes my plight.

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Pulmonary Hypertension - Treatments Question: What was the treatment for your pulmonary hypertension?
Pulmonary Hypertension - Share Your Experience Question: Were you or a relative diagnosed with pulmonary hypertension? Please share your experience.

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