Patient Comments: Pulmonary Hypertension - Share Your Experience

Question:

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

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!

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.

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.

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.

Comment from: I_v_k_c, 13-18 Female (Caregiver) Published: July 30

My best friend had pulmonary hypertension and was diagnosed with it in 2008. Sadly, she passed away on May 31, 2014. She had her fourteenth birthday only three months before. It has been really hard for me, her friends, and family. As I look back to the last couple of months when she was here, I wasn't there for her when she needed me. All the signs were there just telling me that something was wrong and her disease was getting worse. But I didn't notice. I can remember her legs and ankles being swollen at a dance, her lips being purple and blue almost every time I saw her, she had to walk slowly to her classes or else she would faint and she had been in the hospital a lot the last year she was alive. I knew she wasn't doing very good and was there a little but not as much as I should have been. The night before, she had got a surgery to see if she could get a lung transplant and that night, her heart had just stopped. I had read online about pulmonary hypertension but I'm still limited on the information I could get. I still have a few unanswered questions like, 'How painful is it?' I don't know where I can find the answers to my questions but then I found this website and I thought it might help.

Comment from: Tangerine, 35-44 Female (Patient) Published: December 16

I am 39 years old and have pulmonary hypertension. I also have a ventricular septal defect (VSD), tricuspid regurgitation, Hashimoto's and what seems like some mixed connective tissue disease. I have absolutely no physicians or specialists as they constantly give me the run around. My cardiologist 6 years ago told me that the VSD was gone and he was not sure what was causing my pulmonary hypertension only to tell me last year that he found my VSD again and that he didn't know what to do except wait and see what happens each year. It is very frustrating. I find the expertise and quality of care greatly lacking. I am worried as I don't know if I should be in the care of cardiologists and/or specialists, but no one seems too concerned. On a side note my maternal grandmother died suddenly at the age of 40 from reasons unknown, but she did suffer from autoimmune illness like myself.

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Comment from: Winnie, 0-2 Female (Caregiver) Published: February 26

My son was born at 31 weeks and only kept in his incubator for 24 hours as they said he could breathe on his own. While in his cot they had a monitor inside his bed and the alarm would go of if his breathing was affected. It bleeped often and I pointed that out to the nurses, yet they only took a look at his face and said he was fine. At home 4 months later, my son had heart failure and was diagnosed with pulmonary hypertension. I think if he had been given oxygen he would have been fit and well. I get so upset, as now his life is limited.

Comment from: Billie, 65-74 Female (Patient) Published: May 28

I smoked for years and was diagnosed with COPD in 2010. This year, I was in the hospital three times before the end of February. I have been diagnosed with pulmonary hypertension and an autoimmune disease. My doctors aren't sure which one it is, but are calling it a connective tissue disorder. I am 70 and have always been very active and healthy. I am on some medication that is helping, and am able to do things a little at a time. Sometimes I have to sit down for a while, but I feel very strong, especially knowing that I can have a fairly normal life with help from my doctors, friends, and family. I just had to slow down from 100 to 10, but I am thinking positive and will stay that way.

Comment from: Jamesluvslife, 35-44 Male (Patient) Published: April 04

I was diagnosed with pulmonary arterial hypertension in April of 2008. I had been living with severe breathing problems for a couple of years before. Initially, I attributed my problem to lack of exercise. I could barely walk 50 feet without gasping. One day, my legs blew up (swelling – edema). Finally, I realized it was something bad and went to the ER. They plugged me into an EKG told me my heart was enlarged. Next, I had to go to a cardiac hospital. They gave me an IV of Lasix and drained about 2.5 quarts of fluid. I started a regimen of Letairis, Revatio, and Lasix. I have rebounded remarkably. I can now jog a mile (with much effort), but am working on improving even more. My personal outlook is positive.

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