Patient Comments: Pulmonary Hypertension - Share Your Experience

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

Comment from: Nancy, 65-74 Female (Patient) Published: November 02

I am 67 and appreciate every day I have been given. In 2003 I had to undergo emergency surgery to repair my mitral heart valve. I was also diagnosed with heart disease and began regularly visiting a cardiologist. In 2012 I started having severe fatigue, shortness of breath and some pain. I immediately visited my cardiologist and he did an echogram followed by a heart catheterization and diagnosed me with pulmonary hypertension (PH). He then sent me to a cardiologist who specializes in PH. After trying 3 medicines I now take Tracleer which has made a tremendous difference to the way I feel. I also suffer with a tremor in my hands that causes me not to be able to do things I would like to. I have fibromyalgia and chronic back pain. My activity is very limited, but my attitude on life is strong; live every day to the best of your abilities, do what you can and rest when you can't. Smiles are free, so give them to everyone you meet!

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Comment from: ceymone, 35-44 Male (Caregiver) Published: June 09

My heart goes out to all patients suffering with pulmonary hypertension. I would like to share my story. My husband of 41 years was diagnosed late in 2014. A man that was fit and never even got the flu just woke up one day and got dizzy and that's where our nightmare started. He had shortness of breath, couldn't walk long and short distances, excess of water in the body, swollen legs, and weight loss. He was on warfarin and Revatio. I have seen the side effects when the medication wears off. My husband was a positive man. He never allowed his condition to bring him down. He was a real fighter and fought till the end, he never gave up. Unfortunately his lungs collapsed and he passed away. We should appreciate life and live each day as if it is our last.

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Comment from: Bella, 65-74 Female (Patient) Published: September 04

I was diagnosed with pulmonary hypertension in January of 2015. It took 2 years to finally get a diagnosis. I'm on Remodulin and several other medicines. I am able to walk a lot better and breathe much better. I still have lack of energy and a lot of anxiety and depression. I can't do a lot of the things I use to do. Medicine is very intense procedure because it has to be mixed and given through a catheter every other day. I am also in the CardioMEMS test study. I also feel the medical profession as well as the general public should be more aware of this condition.

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Comment from: Pankajam J., 65-74 Female (Patient) Published: April 09

I have been having blood pressure (BP) for the last several years. It started at pregnancy and continued in fits and starts. I was diagnosed as a BP patient and administered drugs starting with diuretics. During the last 4 years I needed rest frequently while doing my morning walk. I had considerable difficulty at airports running from place to place. Doctors kept changing medicines. Between medications pressure used to remain high. About three months ago I went to another doctor, who diagnosed that I had constriction of the throat muscles due to an accident I had 30 years ago which resulted in inadequate oxygenation of the system leading to pulmonary hypertension. Now I am on BiPAP (bilevel positive airway pressure) and oxygen support at night. My dependence on drugs is considerably reduced. My BP is normal with minimum drugs. I have regular medical checkups. During nearly 25 years how I survived the onslaught of various drugs remains a miracle. Throughout the period my oxygen levels and pulse rate remained incredibly low at night for a few precious seconds. How I survived all these years is a mystery.

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Pulmonary Hypertension - Symptoms Question: Please describe your symptoms of pulmonary hypertension.
Pulmonary Hypertension - Treatments Question: What was the treatment for your pulmonary hypertension?
Pulmonary Hypertension - Associated Diseases Question: What conditions are associated with your pulmonary hypertension? How do you manage both conditions?

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