Patient Comments: Pulmonary Hypertension - Symptoms

Please describe your symptoms of pulmonary hypertension.

Comment from: melrai, 35-44 Female (Patient) Published: August 04

I am 35 years old and was involved in a car accident in 2004 in which I suffered a saddle pulmonary embolism. Since then, I have had episodes of shortness of breath. Last summer, I had an episode of pneumonia and was treated with antibiotics. Since then, I have been extremely tired, short of breath when I shouldn't have been to the point that I would miss work because I couldn't get up because I was too tired. In the winter of 2008, I fell off my roof and hurt my right hip. After several doctors, I had surgery in March 2009, and two weeks later, I developed severe pain in the hip. Again I was bounced back and forth from doctor to doctor. After finding another doctor, I was diagnosed with a severe infection and had surgery in early May of 2009. Two weeks later, I went to the emergency room with severe shortness of breath. I was diagnosed with pulmonary hypertension, severe anemia that required a blood transfusion, and congestive heart failure. I was put on lisinopril and Lasix. Over time, I improved, but I still have issues. No one will tell me how I got this, what the prognosis is, and if there is anything besides medication to help. I have read some articles that show that if you have primary pulmonary hypertension that life expectancy is not that long and that is very concerning to me. I am terrified of what could happen.

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Comment from: 25-34 Female (Patient) Published: October 23

I was diagnosed with pulmonary hypertension in February of 2009. I didn't realize the shortness of breath I was having was due to the disease. I thought that it was a result of being overweight. I found out after a freak occurrence of coughing and spitting up blood (large amounts). Hospitalization and a trip to a pulmonologist outside of my hometown led to the diagnosis where a right heart cath was done to show extremely high pressures in my heart. I have a large family and they depend on me very much. I recently decided that I need to get involved more with support groups and raising awareness about the disease. I currently take Letairis daily along with Coumadin and have functioned well, as far as I can tell. I am able to walk farther distances without sweating and getting out of breath. I am currently awaiting results from my second right heart cath and am hopeful that there is some decrease in pressures. I have six kids ranging from 13-3 and not knowing what my prognosis is hurts me every day, wondering if I will get to see them grow. I pray for at least another 10 years so I can see my son grow at least to a teenager. God loves us all. I will pray for all of you!

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Comment from: medicine net, 13-18 Female (Caregiver) Published: October 07

my daughter was diagnosed with pulmanary hypertension aug 6 2009 and is 17 years old. it is alot of sleepless nights for a parent, for she feels and looks good on the outside but is damaged in the inside. with the proper medicine and hope, i put my prayers in god. best of luck to all that is going through this same ordeal.

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Comment from: helpmeplease, 25-34 Female (Caregiver) Published: October 07

My niece has pulmonary hypertension for last 5 years and her condition is getting worse. She is on 2nd type of drugs but doctors are suggesting that she is in her last episode and the last option is the lungs transplant. Can anybody help us or advise / sharing their experience how I can save my niece. she is 26 and a final year medical student.

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Comment from: Bexton, 55-64 Female (Caregiver) Published: August 17

My mum was diagnosed with Secondary Pulmonary hypertension just over a year ago this is secondary to Scleroderma which she has had for 11 years. We went to Spain on a family holiday my mum had been feeling tired and light headed for a few months before we went, whilst we were in Spain she passed out and was taken to a private hospital where within 48 hours they had pretty much done every test available and they had diagnosed Pulmonary hypertension, yet the doctors back home who she had been seeing for months just kept saying she had a virus. After returning from Spain last year she is now under the pulmonary hypertension department, but unfortunately even after a year of being on medication for PH, the pressure on the heart has gotten worse and they are now trying to adjust her meds to suit her. I really feel for both patients and family who are dealing with this illness as I find it so hard to see my mum slowly becoming less and less active and the emotional strain is just as hard for her when all she wants is to have a day where she feels well enough to go out shopping or look after the grandchildren for a day without having to worry about how far she can manage.

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Comment from: Anna, 35-44 Female (Patient) Published: August 04

I was diagnosed in August 2007 with primary pulmonary hypertension. I have been doing very good. I do have my good days, my breathing is normal, and I can function with my daily activities. I like to go to concerts and hang out with my friends. But then I have my bad days, where I am exceptionally tired and have to sleep for a day or so just to keep up with my work or kids. I do work full-time and for the most part, I am at work about 90% of the time. I am on FMLA so that keeps my job secure for when I am out sick. I am living with PPH and surviving. I will say try to go to support groups, they do help out a lot. They keep you sane. Good luck to everyone out there and God bless.

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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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