Getting scared

[Guest guest]

Hello all, my name is and I have had IPF for 3+ years now. Up to now, it

has not been that bad, a LOT of coughing, some shortness of breath. I agreed to

get some home O2 tanks for exertion or whatever, but was still very functional.

Then I agreed to let the doctor perform a biopsy. Big mistake. After the first

surgury, I was weak and sore and needed alittle more O2 than usual, but went

home OK. Three days later I start blowing pink frothy foam from the drain site

in my chest. The lung was leaking air from the surgury and my lung collapsed. I

went back into the hosp. for 2 weeks with a chest tube to try to resolve the

pneumothorax (collaped lung). Twice more during that time the lung collapsed

again. It was still leaking air from the biopsy surgury. Finally they released

me saying that it looked like the leak stopped.I was home for 3 days and could

tell that something was wrong. I had a sudden HUGE shortness of breath incident.

Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance

to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said

that I had to have a second surgury to go back and seal the leak. After the

second surgury, I thought that I was going to die in the hosp. My lungs just

seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I

tried to stand up I would collapse with choking coughing and feel as if I was

suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid

up in the hosp. for another week and the leak is indeed stopped, but now I cant

breathe. I am a slave to this Oxygen hose and keep having to just sit or lay

down and gasp like a fish on the dock. They discharged me any way, and the first

day at home was nothing less than terrifying. I couldnt seem to get enough air.

Now I am slowly improving , and believe that I will get back to my " normal "

soon. The problem is that I feel like I have gotten a glimpse of what this is

going to be like down the road, and I am afraid. How do you deal with that

suffocating gasping sensation? I take some heavy duty cough suppressant which

helps. Oh, by the way, I am being considered for a lung transplant.That is a

whole different set of fears. I know that I am rambling here, but any words of

wisdom would be greatly appreciated.