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Patient story

Rachel McPHee

Hi, I don’t know if my story will make sense to anyone, it doesn’t to me, and I’ll admit that I’m scared of the future and what it holds for me. You see, for some years now, I’ve been diagnosed with COPD, caused by smoking, I was told, although I only ever smoked 10 to 15 a day and that was on a bad day. Last year I stopped smoking, after 40 yrs, stopped on the 13 march, 2006. Doctors said I’d feel much better. It was a struggle, but I managed to stay off them.

In September 2006, my whole body started shutting down. I was rushed into hospital, in and out of consciousness, only slightly aware of what was happening. My kidneys failed, my lungs failed, and got pneumonia all at the same time. The doctors told my family I probably would’nt last that night, but somehow I did, and came to the next day with this big mask on my face, and blowing oxygen into me at a massive rate. My mouth was so dry and sore from the oxygen, I remember begging for a drink every time I awoke or came to, the nurses would wet my lips but that only made it worse, I so much needed a drink that when the nurse wet my lips I would suck so hard on the wet sponge, just to get my mouth moist. Naturally I was violently sick and almost choked, but slowly by some miracle I recovered enough to go home, but I still felt it was very hard to breathe.

Within a couple of weeks I was back in the hospital. Five times I’ve been back in hospital, each time the blood tests, the examinations… I thought it would never end, and now they tell me I have PH. I’d never heard of this disease before. My doctors won’t talk much about it. I’m on a bi-pap machine, which was fine to begin with, but I’m almost back to where I was, so I guess its not working. I’m on oxygen, I feel bloated and full, sluggish and can’t do the slightest thing, without gasping for breath. I live on my own. I have a son and a daughter, but they have their own lives and although my son does phone from time to time, I feel all alone, and totally scared. Been looking on the internet to try and get some information, but would feel better talking to someone who understands, what I’m going through. I’m sorry for taking up your time, thanks for listening.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.