message from Kaye

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Here is a message from Kaye, that she wanted me to pass on...hope all is

well.....Mark

From: " Kaye " <kayefortenberry@b...>

Date: Fri Jul 23, 2004 2:49 pm

Subject: need help and info

Hi all:

As you all know I am one of the " seasoned " members of the group, for

lack of a better description. I have had diagnosed CP since July 3,

1997.

I need some opinions or ideas or whatever here. Some of you know

that I have absolutely no venous access whatsoever. I am past PICC

lines and Ports and Broviacs, etc. My venous system is destroyed.

I have had had to have angioplasty because of damage by PICCs and

Ports, Broviacs, Groshongs, etc. They are basically all the same

because they go in different places but they wind up in exactly the

same place in your venous system.

The last two times I was in the hospital, they could not get any IV

access whatsoever. The last time being June of this year.

Therefore I got no fluids, only what little I could drink which

quickly came out the other end. Pain medicine was by injection.

It is to the point that I feel like the Joint Commission on

Accreditation of Hospitals needs to get involved BUT one problem.

This hospital ...... the only hospital here, is my husbands

employer. You get my dilemma. Each time I go in, the doctors

order PICC lines, but the interventional radiologists that put them

in refuse to even look and try. They won't even acknowledge the

fact of how desperate a situation is. They tell the attendings they

have been there before and they are not going to try! The general

surgeons of which we have very few, will not do it. Most of them

have already done it at one time or another and won't try again. I

had one guy tell my family physician that if he tried to put in a

central line he would be committing medical malpractice!

I cannot take much more of this. I have been home 6 weeks. In that

time I have lost 12 pounds and everything I put in my mouth goes

right through. We all know that drill. I can barely put one foot

in front of the other and cannot go up and down the stairs at my

house because I am so weak.

I called the Joint Commission today. They would tell me nothing

without a release of information form, yada yada. I explained to

them my husband is an employe of this institution and I could not

risk doing that. But that I wanted to know the statutes as to what

I could say to the hospital so that they would know I mean

business. All I got is consult an attorney. Well, where I live,

attorneys are a joke. The attorneys and the doctors are bought

off. Its a long story, but as they say, been there done htat and

its a joke.

My GI doctor said the last time I was in after my last

hospitalization that maybe the doctors thought I was going to sue

them! I informed her I had no intention of trying to sue anyone who

sincerely was trying to help. I know that I am a risk but geez what

right do they have to refuse to try?

Right now I am in need of fluids desperately and possibly some TPN.

I have been that route before too but both require some central line

access, as least the tPN does. Fluids go through peripheral veins

but I don't have any, of course made worse by dehydration.

This has been the biggest problem and I am known by name by the IV

team at the hospital. The IV team gets mad because the surgeons

won't put in a central line, the surgeons get mad because the IV

team can't get an IV in and the pain management guys says they are

all criminals but does not have the " guts " to fight for me.

I have had it with the whole medical profession. I am not naive to

the medical profession as I have worked in it for 25 years but this

is ridiculous.

Anybody got any ideas. Anybody got any legal advice? Anything,

some comeback I can use hte next time they say no IVs, no fluids?

Help!

Kaye NC