Need a little input about a crisis..long post.

[Guest guest]

Hi,

I had to stop receiving the mito digest for awhile as I have been

pretty sick. I am sure you all understand that. I am having

gallbladder problems and eating problems.

I have resigned myself to having to face surgery for the removal of

the gallbladder. Although very reluctantly as a surgery I had a year

and a half ago, was very difficult to recover from.

I have had enough pain to stop me from eating altogether now for the

past 3 days. I called the surgeon almost 2 weeks ago, after an

initial attack and he was out of town. Talked to the mito doc about

coordinating his working with the surgeon. The mito doc talked to

the surgeon to get him to move up my surgery date which is 10 days

away instead of in October.

But in the meantime, I am not eating. I am managing to keep drinking

but even drinks trigger moderate pain. The surgeon seems to think

that being on just fluids until the surgery is acceptable. My mito

doc is out of town until Monday. I had to go in the ER yesterday due

to not being able to eat or drink due to pain and connected with the

docs covering for him.

I came home feeling pretty disappointed. I had more tests done and

the condition of the gallbladder has been determined not to be an

emergency, which would move up the date. The surgeons suggested I try

to eat and drink and take pain meds in order to get it into me and

hold off for the 10 days. The metabolic doc covering, suggested I

stay in the hospital with IVs. She told me they could give me

nutrition through an IV and avoid the TPN. The surgeon came back

with that I would get more nutrition from apple juice then the IV

they could give me and why risk the potential infection etc of a

hospital stay.

So I opted to go home and try liquids. I told them I would not even

try again to eat solids...I have tried it enough to know it isn't

working. So I see it as a short term solution and can't see how I

can wait for 10 more days unable to eat and what condition I will be

in for surgery in that case.

The surgeon came back with that according to my blood work, he feels

my nutritional staus is about 95% and as long as I don't get

dehydrated I should do fine. *sigh* I had to point out that blood

work doesn't always tell the whole story with a mito patient. He

conceded that blood levels don't show what is going on at a cellular

level, but the way he said it was like it wasn' t that important and

I would be fine. [Later when I got home I looked at the blood work

they did and saw a number of items that were different than usual for

me. TSH was very high, platelets were quite a bit lower than the

past, a number of things were high normal.] I can never understand

why docs look at blood work results in a vacuum, and put so much

store on them in the face of symptoms saying otherwise. Especially

when they will readily admit that they know that the body will pull

nutrients out of the tissues to keep the blood levels normal when you

are low.

I tried to pin them down to a surgical date, but they said they had

to wait and talk it over on Monday and it depended on if there were

other emergency surgeries that would take precedence.

So I went home. I had been in the ER from 10a to 8p and the mito doc

had sent me there especially for fluids. I only ended up getting one

and 1/3 bags of fluid over that whole period of time. They had

disconnected me from the IV about 45 mins before I left. When I got

up and got dressed and got wheeled out to the lobby, I started

sweating in a cold air conditioned building. My ride pulled up and I

left, but within 2 blocks of the ER, I was starting to have a wet

shirt from sweat. It was hot and humid out, so we blasted the air

conditioning for the 25 minute ride home. By the time I got home, I

was soaked and my hair at the nape of my neck was dripping wet, I had

rubbery legs when I got out of the car. I got into an a/c house and

thinking it was blood sugar, I got a sweet drink right away. As I

started to drink it I found I was so thirsty, I just drank it right

down and wanted another one.

To me these are classic symptoms of low blood sugar. I have NEVER

had this severe a reaction ever. I called the metabolic doc on call

and explained it to her, and she started making suggestions for what

it must be other than blood sugar. She suggested maybe I was getting

a virus or it was just from the hot and humid weather. I was in

complete disbelief that she would say that. She said it couldn't be

from getting off the IV bag, because that would be so unusual and it

would indicate a serious problem with glucose regulation. Why

wouldn't she want to get to the bottom of it and find out if it IS a

problem before surgery? If I am having trouble with glucose

regulation now, what is the surgery and recovery going to bring?

So I guess I am really in a pickle. I have to face this surgery not

only being nutritionally at a very low point, but with the help of

mito docs that don't help. Surgeons that ignore the mito docs anyway,

and a lot less confidence in the hosptial I will be going to after

watching them work in the ER.

They reluctantly brought up TPN, but every doctor that discusses TPN

with me, keeps telling me that I don't want to do that, that there

are too many potential problems with it. If TPN is a risk for me,

then moving up the surgery is what would be the best scenario and

give me the best chance of tolerating the surgery.

If IVs for fluids and TPN with the accompanying risks is all the mito

docs have as tools to help me with a metabolic crisis, then I don't

see how I am better off. From my point of veiw, if the mito doc has

little he can do for me, at the very least they could do, would be to

effectively advocate for me and get the surgeon to move the date up.

On top of which it appears that the mito docs are pediatricians and

can't admit me to the hospital. Although what good being in the

hospital is if the only methods of treating me cause more harm than

good, I don't know.

Does anyone have any suggestions or input?

Thanks,

Adam