Jane (My whole ordeal at the hospital)

[Guest guest]

Hi Jane, Thank you for the kind words and the hugs.

I've been told that I shouldn't feel frustrated, upset, mad, angry etc... I should let it go, like nothing has happenned,

so I won't frustrate my medical team. It's OK for them to put so much stress on me, and I have no say...sorry but

it doesn't work that way.

Call it an attitude problem, I didn't need extra pain for no reason, bruises, cuts and a reminder every day of horrible

memories....

I don't know why he waited until I was under the knife, that's a question/answer I will never find out. An hour before I went in

surgery, I saw my lung dr and he told me, that he will write orders not to receive a lot of fluids because of the PF and to much

fluid to build up in my lungs. Then I was given medication to make me relax, was taken to operating room.

When I woke up from anesthesia, was intubated, almost puked and I tried to talk, but couldn't. Even tried to pull it out, and

they kept holding my hand down. I kept hearing nurses, breath in/out, so your breathing can be normal for us to remove the tube.

No she doesn't need pain medication.

When the surgeon came in and told me that surgery wasn't done, after I had woken up, I was in completely in shock,

speechless etc...and still don't know how I should feel.

If I would have known that this would have happenned, I would never had consented to surgery and told my GI. He wants me

to see him for the stitches. At the moment I can't bring myself to do it. Whether it's right or not....that's the way I feel...Each day

surgeon came in my room to check up on me, I just wanted to tell him out of my room....I didn't consent to this.

He wanted to send me home, after I woke up from anesthesia, the nurses on the floor said No because of the vomiting, the diarrhea

and pain. The only reason I stayed in the hospital for 3 extra days it's because of the nurses that didn't want to send me home. On

Friday, I told the nurses I want to go home, I can't stay here, it brings back bad memories, I just want to feel safe and comfortable in my

own bed. That's why I was home on Friday.

Irene

---- Original Message ----

To: Breathe-Support

Sent: Sat, 26 Apr 2008 7:38 pm

Subject: Irene

Irene,

I just wanted to send you some hugs. I am praying that you can work through these difficult circumstances, whatever they may be, involving your episode at the hospital this past week.

I have had many issues in the past involving doctors. The worse one was when the doctor told my family that I was brain dead, blind, and deaf and that they should just let him turn off the vent and let me go in peace. Eddie, absolutely, in a forceful way, told that doctor that I was still there. In the end, it was discovered that I was way beyond this doctor's capabilities. My family had me transferred to Emory in Atlanta and 4 years later, here I am! Emory is very well-known and is a lot larger than the little podunk hospital in my hometown.

Irene, this surgeon may have known he was inadequate in helping you. But why wait until you are under anesthesia and already cut open! You certainly deserve a meeting with him to ask him "Why?" Make him admit it. And if you have lost trust in your primary doctor, i would advise you to change because that trust can never be regained. I have changed doctors many times and it was always for the best for me.

As you know, I went to Emory yesterday to have tests for a study. I changed pulmos last year at Emory and I dearly love the new one. My ex-doctor was there yesterday when I was there. You know what he did, he waved to me as Eddie & I left. I barely gave him a wave. He always made me feel very lowly, etc. and he would not let me ask questions. So I changed and now I am better though I still have IPF. Even with that, when one feels better, it helps us to be more stable.

Love & Toodles to you, Irene

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

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