Patient Comments: Pulmonary Hypertension - Treatments

Question:

What was the treatment for your pulmonary hypertension? Submit Your Comment

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.

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.

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.

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.

Comment from: susan, 45-54 Female (Caregiver) Published: March 01

I just found out I have pH I have some swelling in my legs not much shortness of breathe. I'm not on any medications yet. My doctor act like I shouldn't be concerned. I'm confused I'm on dialysis having palpitations and scared going to the doctors Tuesday hopefully they put me on medications.

Comment from: Minnesota Mom, 35-44 Female (Patient) Published: February 08

I could barely walk 50 feet and my pulse and heart would be pounding at 110+. In 2012, I was 43 and diagnosed with pulmonary hypertension, diastolic dysfunction, and congestive heart failure all as a result of sleep apnea apparently. I currently take metoprolol, verapamil, and lisinopril with hydrochlorothiazide.

Comment from: Jackie, 55-64 Female (Patient) Published: January 14

I was diagnosed with pulmonary hypertension in 2008 and I almost died. Soon after I had a mitral valve replacement. I have been treated for pulmonary hypertension with viagra and now I am on adcirca which is the same thing. Now I breathe so much better.

Comment from: To young, 35-44 Female (Patient) Published: January 03

I am 35 years old. I have severe pulmonory hypertension. I was diagnosed with it in 2009. I was 32 years old. I am also on oxygen for the rest of my life. I don't have any friends now because they find out that I am on oxygen and have to carry it with me. I feel so left out. So I just stay home. I am on Tracleer, Relation, and Warfarin.

Understanding COPD
Comment from: 25-34 Female (Patient) Published: November 29

Hi, I'm 30 years old and have been diagnosed with primary pulmonary hypertension. It's in my family. My grandmother, aunt and uncle had it. the pills I'm on help. I'm on 40 mg of Furosemide twice a day and Warfarin and Viagra 50 mg three times a day.

Comment from: 19-24 Female (Patient) Published: February 27

Pulmonary hypertension came into my life on December 22, 2007 at the young age of 21. Family and friends were noticing that I couldn't walk far without stopping for breath, and would be breathless with most activities. I went for an echocardiogram and was diagnosed with pulmonary hypertension. My treatment at first was put on bosentan, was stable up until last year, when I experienced decreasing energy levels. I am now on bosentan, and sildenafil.

Comment from: nana, 45-54 Female (Patient) Published: March 16

I am a 50 year old female. In the last 6 yrs I have had increased leg edema and weight gain. I thought I was just out of shape but had no energy to exercise. I had gone to the cardiologist many times but was told to lose weight and given Lasix. Six months ago my shortness of breath increased so much that it was hard for me to finish a sentence. I was unable to climb more than 4 steps without stopping. I went to a new primary care and told her how I was feeling. She ordered a stress test and referred me to a cardiologist. The cardiologist did many tests and told me to watch my salt intake and put me on a different fluid med. The breathing continues to get worse, so I went to a pulmonologist. He did a breathing test and a sleep study. He requested the cardiologist to do a heart catheter that diagnosed my Pulmonary Hypertension. I do have primary pulmonary hypertension. I was placed on the Revatio three times a day and I felt results within the first week. I have lost 21 lbs and decreased my salt intake to less than 2000mg daily. I feel better than I have felt in years. I wish someone had listened to me earlier. I just want everyone to know to keep telling providers how you feel until you get a provider that pushes for the real diagnosis.

Comment from: sawlove, 65-74 Female (Patient) Published: May 18

I have pulmonary hypertension and I am sucessfully treated with hydrochlorothiazide(HDTZ), sensible eating,especially low sodium, low fat and less sugar, exercise, water, weight reduction and sunlight.

Comment from: BigMamoo, 55-64 Female (Patient) Published: February 10

I was just recently diagnosed with pulmonary hypertension. This is my 10th year on C-PAP, O2, had atrial-fib diagnosis 3 years ago, Cirrhosis of Liver- years ago, pacemaker put in 1 year ago. We now need to check for Portal Hypertension. There are a lot more physical problems. I try very hard not to get depressed or give up. My God and I are close. He carries me through it all. Without his blessed assurance and his strength it would be impossible. Oh there are low points but prayer, talking with others and doing what I can, when I can really helps. Contact doctors at transplant centers for their help/advice. They are more informed. Even if you are not eligible.

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