Dear ARDS Support Center,

I am alive and relatively well since my experience with ARDS from February to March 2004. I remember very little however at the suggestion of your website my family kept journals. The last thing I remember was being in ER and the seventh attempt to put in an IV. The first thing I remember afterwards is fear that I was dying (although I was really past the worst and about to be extubated). Then I asked about my dog.

Your website and the links allowed my family to understand what was happening to me and to dialogue with doctor's in an informed way. Most of them travelled from England when they heard I was in ICU but ARDS was not yet diagnosed. By the time they were picked up at the airport I had lost the ability to breathe on my own and the infection that preceded ARDS was rampaging through my body. I cannot imagine what that was like, to arrive after 12 hours of flying to find how quickly I had gone downhill. No one in our family has ever been in hospital for more than one or two days and it was always relatively minor.

To date my mother cannot go into a hospital anymore nor can she watch TV shows where monitors are beeping in hospital rooms. She was the one who took me to the hospital and the first to receive the news of my ARDS and the mortality rate of it combined with sepsis. The courage of my family was amazing. One of my brothers, Paul, purchased a textbook on ICU medicine and proceeded to speed read through it on the first day. The poor doctors were hammered with questions at the family meeting held every morning at 11am. My other brother John had studied diving and related fields so he knew all about PEEPS and such. My mother is a retired science writer and my father is a retired Prof. Of Biochemistry. My sister, Geri, did not pursue science and kept asking for the Cliff Notes version - which had I not been so sick would have been quite funny. Geri contacted friends and family members all over the world by email and telephone. She kept them up to date with my progress throughout.

I was never left alone, without a family member present, for any procedure except one (the doctors wouldn't let someone come in). A couple of friends were allowed in to "talk" to me while I was in a coma and one looked after my beautiful Husky, Boo Boo. My father kept telling me that my dog was OK. Apparently there were differences of opinion about my music tastes and Paul thought to get the CD's from my car stereo figuring they were my favorites. Geri says that had I been awake I would have peed my pants laughing at the interactions of my family with each other. They even thought about whether my brother John should "talk" to me in case it made me realise how sick I really was (very little pries him away from his loving family in England). John wanted to take pictures of me should I want them later but the rest of the family vetoed him.

It is hard for me to understand the severity of what happened. My post extubation progress was quite amazing by all accounts. I, of course, found it extremely frustrating. Poor fine muscle control, no appetite, sore throat, shortness of breath, unable to stand unaided, unable to go pee without help and so on. When I got home to my mother's house, my biggest fear was that the bathroom was ten steps further away than the one in the hospital - no one wants their mother cleaning up that kind of accident for them at 36 years old.

My family knew I was a feisty one and thought if anyone could pull through this I could - had I been aware of what was happening I confess to being unsure.

I am forever in the debt of my family, doctors, nurses, respiratory therapists, physical therapists, occupational therapists, nurses aides, friends, priests and this website. How do you thank people for your life? It seems so inadequate. My main ICU nurse had lost her husband to ARDS about a year before and she was outstanding in her care of my family and me.

Moments like having my first shower, going potty on my own, making dinner for myself, holding my niece, walking my dog, going to the store all became amazing events instead of plain vanilla life.

My father and brothers have returned to England. We are trying to get on with normalcy - whatever that is.

Live the life you kept to the full.

Thanks,
Fiona Hayner
Madison, WI
fmhayner@charter.net