Re: Where is there adult coordinated care for Mitos?

[Guest guest]

I don't have any docs for you in the Boston area, but make sure you

print out and take the following article regarding anesthesia. Make an

appointment with anesthesia for a day or two BEFORE the surgery and

make sure that the doc ASSIGNED to your case will be the one you have

the meeting with. It is not something that they can quickly go

through. I have found that adding IV Carnitor to my surgery meds makes

my recovery SO much better too. I had my gallbladder out in June. I

hope for your sake they can do it arthroscopcially.

AdamM321@... wrote:

Hi,

I am needing to have surgery quickly for a gallbladder problem that is

preventing me from eating very well at all, which of course, is causing

me energy/muscle/breathing problems. Although I have seen a specialist

in the Boston area, the specialist is part of a pediatric department

and they really don't have coordinated care for an adult patient.

Consequently, I am on my own trying to find a surgeon/primary care doc

team that I feel can manage my care for surgery.

Anyone else have these issues? Any suggestions? Doctors in the Boston

area?

Thanks,

Adam

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[Guest guest]

Adam

I had shoulder surgery last Jan. at our local hospital without a mito doc

involved. I made sure my primary care physician knew what medications I have

problems with and I met with the head of anesthesiology as stated.

Things went well and I had no problems. I requested the IV Carnitor which

also helped me. It had to be ordered a couple of days in advance as they

didn't carry it in the pharmacy.

laurie

> From: AdamM321@...

> Reply-To:

> Date: Tue, 30 Dec 2003 14:36:25 EST

> To:

> Subject: Where is there adult coordinated care for Mitos?

>

> Hi,

>

> I am needing to have surgery quickly for a gallbladder problem that is

> preventing me from eating very well at all, which of course, is causing me

> energy/muscle/breathing problems. Although I have seen a specialist in the

> Boston

> area, the specialist is part of a pediatric department and they really don't

> have

> coordinated care for an adult patient.

>

> Consequently, I am on my own trying to find a surgeon/primary care doc team

> that I feel can manage my care for surgery.

>

> Anyone else have these issues? Any suggestions? Doctors in the Boston area?

>

> Thanks,

> Adam

>

[Guest guest]

How did you make out with your gallbladder out? Has your eating been better? Did you have a good primary care doc or a mito specialist that was caring for you during and after surgery?

Hi Adam,

I had gallstones and had my gallbladder removed laparoscopically when I was 19 (7 yrs ago). This was before we knew about mito and I did fine with the surgery. I had to stay in the hospital 2 nights for pain control but I think now they sometimes even do it in same day surgery and send you home the same day.

As soon as I had the surgery, the pain I had from gallstone attacks was gone, but it didn't help the pain I get from my underlying motility disorder. My eating and bowel habits weren't affected by not having a gallbladder.

Are you getting it done at NEMC? If so, the pediatric metabolics doctors can still consult even though they can't be your primary doctors there. Another adult member on this list was in a similar situation and they were consultants on her case instead of the admitting doctor.

Let us know when it is so we can keep you in our thoughts.Malisa