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Patient story

M. Cindy Bennett

When I first started getting short of breath and really tired, I thought I had just gained a little weight and I started to walk. I would be the only one out of breath and I mean out of breath! I felt like my heart was going to beat out of my chest. My head hurt and I felt dizzy. I thought. “Oh no, what the hell is going on?”

So I made a doctor's appointment which was, to my dismay, the first of many. This was in September of 2007. While the doctor started the testing, I continued doing the things I always did.

I didn’t know until later that I could have died from the simplest things that I took for granted. I finally went for an echocardiogram. I, not knowing what was normal or what was not, just laid there listening to my heart and watching the monitor. The tech then said she had to go out for a second and let her computer reboot because it was acting up. Well, she came back in with another person who turned out to be a heart doctor. They told me, yes, you have PAH. The right side of my heart is enlarged. I just started bawling, my ears got a sharp, loud whistling in them and my head began to pound. I couldn't believe it. I didn't want to believe it. I went by myself, not thinking this is what I would find out. I don't even know how I got home. I was numb.

I was sent to Erie at first, for a heart catheterization. They did this in my groin. This was supposed to heal within two weeks: bull crap! I was given morphine during the procedure and it made me sick; so that when I got out of surgery I threw up, making the incision open back up. They had to have someone put pressure back on it for another 20 minutes. It took about two months to heal. I was in so much pain. My pressures were 105. I had it again in Pittsburgh, this time in my neck. If it has to be done again, it will be in the neck or it won't be done at all! This time my pressures are down to 81, so it’s getting better with the meds.

I am on Revatio 20mg three times a day. I joined a PAH study. Hopefully they help someone else or find a cure. They put me on Tracleer 62.5 and now it’s up to 125mg two times a day. I am also on Coumadin, and Lasix. I use oxygen at night only; I feel lucky that I don't have to use it all the time. I hate the part you put in your nose…it really aggravates me.

I also take other meds for hypo-thyroidism and polycystic ovary syndrome. I don't know why I have it all, but I just deal with it. I feel like a walking pharmacy. But, hey, it could be worse.

I got my PAH from my mother, who died 10 months after she was diagnosed, in 1974. I wish there would have been help back then for her and anyone else.

About 10 years ago the doctors would have told you there was no help. Five years ago they would have told you that a heart and lung transplant was your only option.

I just hope my kids or grandkids don't have it.

I can't do a lot of things that I used to and that sucks. I forget at times and walk fast, or get up too fast, and then it hits me: I can’t breathe so well. I feel like a snail sometimes. I can’t carry anything over 20 lbs. I love to move our furniture around and that's out, so guess who gets to move it!

Every day is a gift. I wake up and think “I'm still here,” and I don't take anything for granted anymore. I used to think I had to have material things, but now I just want to spend time with my family and friends. My hubby, Mike, is the most wonderful man I know. He has been there through it all. He babies me. I want for nothing, I feel guilty sometimes when I can't help out. I feel really old sometimes, I get it in my head that I can do something, but my body won’t let me.

I get dizzy sometimes, and seem to get colds a lot. I can’t bend down; it feels like my neck and head are going to explode. I get these chest pains that really scare the hell out of me. The doctor tells me that it’s normal with PAH. Great…they remind me every day that I have this disease.

This is my story, I hope to live a long time and enjoy life to its fullest. 

 

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