Thanks for responses to Having Setback..

[Guest guest]

Hi,

Sorry I didn't get back to you all yesterday. We ended up going to

the ER. I went because three different doctors/residents who spoke

to me before I left the hospital told me to go back to the ER if I

had pain. They wanted to measure Liver Function Tests as close to

the pain as they could.

So I went in after being in pain that woke me up twice during the

night and was worse by 6am. I had asked the doc who told me to go to

the ER to give me a note with the tests that he wanted me to have.

So I gave them that and explained my situation. The nurse started an

IV for the blood work, she did a terrible job and I knew as soon as

she did it something was wrong. My arm ached for the next 4 hours,

and when I got home the bandage was soaked in blood. And that was my

good arm.

To sum it up, I was there 5 hours. They never gave me an IV because

my electrolytes were fine. My liver function tests were normal. The

Surgical dept had the PA tell me that my tests were normal, I could

go home and since they were the surgical department, they thought I

should call the GI department and had her give me the phone number of

the department. They told me to stay on clear liquids until I saw the

GI department. I was so angry I just couldn't wait to get out of

there. I think they could have handled that better.

I can't explain the whole situation. All I can say is that I called

my PCP when I first started having trouble after the surgery and he

wouldn't even treat me at all. He wouldn't even take my blood

pressure or check electrolytes when I had an appt after telling him I

was not eating for over a week. He said I needed to go back to the

surgeon. Then I had to wait two more days to see the surgeon.

I went to the surgeon, and they admitted me right away and of course

they evaluated me. They did tests to show they didn't injure me from

the surgery. They said all those tests showed no injury, no bile

leakage, but that maybe taking out the gallbladder changed things and

they weren't working the same. Then they went the extra step to get

the GI dept down to see me and did more testing. When I didn't want

to have the ERCP after nothing else explained my pain, we agreed I

could go home and wait for my appt on the 29th with the GI doc who

specializes in motility disorders.

After a few days on IV with nothing by mouth I had then been able to

drink a clear liquid diet and hoped I could manage until I could

figure out what to do. But they told me to eat what I thought I

could handle. It was my idea to just do liquids, not to take a

chance. They said if I had pain to go to the ER, etc.

I got home, I drank liquids, advanced to milk w non fat froz yogurt

in about 6 oz sizes twice a day interspersed w juices and broth. I

did okay on that. Then I tried increasing etc. and got into trouble

on Tuesday night. So by Wednesday morning, I had had nothing but a

6oz shake at 9p the night before and apple juice at 2a. But had drank

plenty all of Tuesday. So my lites were ok when they took blood.

I am home trying to drink liquids and managing to drink small

amounts, but the liquids are triggering the pain. In the past it has

taken two days on IVs with nothing by mouth to get things calmed down

enough to tolerate liquids. I am also having trouble with juices and

gatorade because of the sugar and triggering hypoglycemic symptoms.

So, I feel stuck. I don't want to go to my PCP as he sent me back to

the surgeon plus I had a bad experience with him. It would seem the

surgeon feels he has done all he should be expected to do. MY mito

doc is a pediatrician and couldn't admit me if he wanted to, plus GI

probs are not his field and not much he can do for me in that

department. I am waiting to see a dysmotility GI next Wednesday. I

need a new PCP, again. I feel really stuck and all when I feel too

sick to deal with it.

I am more or less stuck because they have done testing that doesn't

show enough answers to find a solution. The results are confusing

and contradictory. Therefore they want to do another test that is

invasive and risky, and I don't think I should do that without it

being a last resort. And if I did have it done, I have been told to

get the BEST person to do it. So I needed to be home to find out

more info and wait for my appt with the GI speicialist on dysmotility

that I am seeing on Wed. I saw the GI department when I was in the

hospital but they don't want to talk about anything other than the

ERCP.

If anyone has any suggestions or input, I would appreciate it.

Thanks again for all your kind notes, but since I can't' answer them

today know that I appreciated all the supportive and caring posts. I

guess I don't have time to think about feeling discouraged right now,

but I reserve the right to later on..

:-)

Adam