Re: Pancreatectomy /cell transfer to Shirley, Gail, , Kay

[Guest guest]

>

> Dear Heidi, thank you for letting us know that you do want to hear

about our

> cure. I feel so much better now knowing that there are people in

our group

> who know to listen to our story and then make their own decisions.

You are

> very kind to let us know that we are doing the right thing by

telling you

> about our surgery that cured us. Your new friend, Shirley

>

Hi Shirley -

I'm not entirely sure where the impression came from that someone

thought people were offended by talking about the pancreatectomy. I

don't think that is the case at all.

I think it's good that you guys talk about it, explain what it is,

what the procedure is, and how you felt afterwards. But what I was

sensing is that people wanted to know more than just that - they

wanted to know everything - good and bad.

A few months ago I was scheduled for an EUS - and I had never had

anything liek that, and I was very nervous. I wanted to know

everything - what kind of room it was done in, would I be awake,

asleep.. would I remember anything, would I feel the tube going down

my throat, would that hurt, would I gag, would I feel it moving

around in my stomach, how would I feel afterwards - would I have a

sore throat, would I be able to eat, how many hours after the

procedure would I be able to eat, etc. I wanted to know every single

thing ahead of time, because that's the only way I am comfortable with

medical procedures.

If I were thinking about the pancreatectomy, I would want to know

things like how did you feel when you woke up afterwards? Were you

stuck in the hospital for a week? Did you have diarrhea for a month

afterwards while your body was readjusting? How soon afterwards could

you eat food? I read somewhere that a guy had this, and was back to

work within a month. Is that a normal timeframe? What's going on

during that month of recovery - was he flat on his back for a couple

weeks in a lot of pain? Was he eating and drinking normally? Someone

said it takes about a year for your body to completely readjust - what

is happening during that year? What kinds of problems are there while

you are readjusting?

Every kind of surgery has its drawbacks, and I think people want to

know about those as well. I had surgery on my wrist once, about ten

years ago, and I knew my arm would be out of commission for about a

week. So I bought a bunch of frozen dinners to just zap in the

microwave (I was living alone) and it wasn't until I got home from the

surgery and tried to open one of them that I realized I couldn't open

the box with just one hand. Pretty dumb. But I wished someone had

pointed that out to me before hand, that was a very long week! So

this past year when I had surgery again on the same wrist, I worked

something out ahead of time that I knew I could do with only one hand

(I practiced before I went for the surgery

So I think it's those kinds of things that people want to know about.

There is no way that you can go in for any kind of surgery, and just

walk out of the hospital the next day with absolutely no problems from

the surgery.. so this is what I think people mean when they say they

want to know about the " bad and the ugly " .

Hope that makes sense...