Patient Comments: Pulmonary Hypertension - Treatments

What was the treatment for your pulmonary hypertension?

Comment from: Lizzie, 65-74 Female (Patient) Published: June 19

After years of suffering worsening shortness of breath and weakness in my legs, and many visits to various specialists, my general physician sent me to a cardiologist she said would put me through a lot of tests, if I was willing. I was. After a number of scans, respiratory and sleep tests and echocardiograms, then finally a right heart catheter, I was diagnosed with severe pulmonary hypertension. Bosentan was prescribed and made a difference, but after only 3 months my liver function blood tests were bad so a change of medication to ambrisentan was made. I also had 2 cardiac stents inserted in arteries that were heading to blockage, and then 18 months later, a pacemaker for sick sinus syndrome. I am better than I've been for years. I am an Australian and lucky to receive all medication for a fraction of the normal cost. Various other medications have been prescribed during the last couple of years, but along with the ambrisentan, I am now on only cholesterol and blood pressure lowering medications and aspirin. Being physically active and walking keep me feeling good.

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Comment from: ros85, 25-34 Female (Patient) Published: July 31

I have been diagnosed with pulmonary hypertension (PH) for just over 3 years. The only reason I found out I had PH was because of a tiny stroke I had in November 2010 (which was caused by a birth control I was on, NuvaRing). When I went to the emergency room (ER) the doctor on call said he didn't think it was a stroke and said it was migraines because of my age (26). We asked for a referral to the neurologist and waited 3.5 months to see him. Within a week I was sent for an echo and Holter monitor. From the echo the doctor knew exactly what I had and sent me the next day to the PH clinic where I was properly diagnosed. I do have daily struggles and good and bad days. I try to research as much as I can and get different kinds of feedback. I hold a full time job and a part time job, but take advice where it is offered. I rest as much as I can and look positively at life.

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Comment from: benac54, 55-64 Female (Patient) Published: November 08

I have had pulmonary hypertension for 2 years now. Got immediate help, probably because I'm a nurse. I am 62 years old now, and was working full time 12 hour shifts when I was diagnosed. I had shortness of breath, with minor exertion, especially when walking up inclines, got frequent respiratory infections, and started have chest pain and tightness. I now go to Pulmonologist at Baylor Medical Center in Houston, and have not seen too severe an increase in my condition. I take Letaris, Revatio, Ventavis, Adactone,and Diovan for my treatments. They do all seem to be helping. I get frequent echocardiograms and see my doctor frequently. Am also in a study for Ventavis.

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Comment from: Mariaace3, 19-24 Female (Patient) Published: December 05

I have just recently found out that I have PH (pulmonary hypertension). When I was diagnosed on November 7th 2013, it was a big shocker to me. I am now learning how to cope with my heart disease, I'm at the hospital every week, cardiologist says my case is very severe and they are talking amongst other doctors in different hospitals because they don't know how I got this heart problem. I went through a lot of needles and medicines, they did X-rays, ultrasound of my heart, TTE (transthoracic echocardiogram) and cardiac catheterization which hurt terribly. Next week I'm going in for a CT scan. They have me on medication, lots of medications. My life has changed dramatically in just one month, I can't do many things now for example dancing was a passion of mine now I can't do that because I lose my breath easily.

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Pulmonary Hypertension - Symptoms Question: Please describe your symptoms of pulmonary hypertension.
Pulmonary Hypertension - Share Your Experience Question: Were you or a relative diagnosed with pulmonary hypertension? Please share your experience.
Pulmonary Hypertension - Associated Diseases Question: What conditions are associated with your pulmonary hypertension? How do you manage both conditions?

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