back from the hospital stay- long

[Guest guest]

hey guys,

Dont think yall knew, but I went into the hospital very early friday december 3

after spending thursday night in several ERs before they figured out which

hospital they decided was best for me. I actually ended up going into DC

childrens hospital because several of my drs are there and some of my drs are at

a hospital nearby. I went in due numerous things including severe sleep

deprivation due to pain and nausea which lead to several seizures, vomiting and

increased autonomic problems.I figured I would only be in over the weekend to

monitor my seizures and to get my autonomic probs under control, etc. Well, they

decided they wanted to keep me till last night. I was put on IV carnitor there

finally (had stopped taking oral due to how it affected me GI wise), they put me

on a PCA pain pump there for my pain they had me see several specialists- not

only the dr that treats me autonomic probs (those he got under control in 2-3

days) but then a neuro who put me on the carnitor to help with the neuro probs

(seizures etc) and mito of course, they had me see GI and nutrition because I

hadnt had a bowel movement in a long time and wasnt able to eat solids at all

and liquid diet much at all. I went through a procedure to try and clean out my

colon over about 5 days and that didnt work so they now realize my colon

dysmotility is alot more severe than they thought it was. They are trying me on

meds that arent working so they want me to see some other motility specialists

that they have suggested (several, nearest is over 2 hrs away) and see what my

other options are (like sugery I guess). And to do more extensive GI tests and

see how bad my small bowel dysmotility is too. My gastoparesis is getting severe

too but they arent sure if that might be secondary to the bowel probs.

Swallowing luckily is still not so good but not getting worse. Anyways, nutrtion

wants me to also have the GI look into feeding tube or TPN with how my eating

is, depending on what the drs feel my gut can take (if it could take a feeding

tube, etc). The drs also are weening me off pain meds now because they feel its

making my colon worse (also one of the drs said that mito didnt cause severe

pain ever ha)- I dont know if it is because my colon was bad before pain meds,

they have me on methadone now instead of dialudid and sending me to johns

hopkins pain management clinic to get their opinion on it all. I'm in alot of

pain because of the med change but trying to deal. Being in the hospital bed

most the time (had to be on a monitor all the time because of my heart etc)

didnt help either, feeling weaker now. Also now I am having more bladder probs,

losing control of my bladder now sometimes along with the past probs I had

(interstitial cystitis and neurogenic bladder) and my uro wants to teach me to

self cath. I go up to s hopkins on Tues to see an internist that specializes

in genetic diseases and he supposively is interested in mito and wants to try

and get me a team together up there because i have so many pediatric drs down

here and they seem to want me to get adult drs now. Who knows what he will be

doing for me there, the hospital seemed to want me to go into an inpatient adult

program for some things still (pain management, GI probs, etc) so we will see,

they already have contacted a GI dr and pain dr up there for me, I dont know.

Anyways, I hope that everyone else is doing ok, Its been so stressful here for

me- my poor mom has had to do all this by herself taking care of me, my dad

didnt even come to visit me or anything, we have talked about moving out and

closer to my drs in baltimore if it works out with them even, i dont know, I

dont know what I would do w/o yall and my mom, it seems that the 2-3 friends i

had left have finally deserted me (moved away, got mad at me because of my

disease, etc). Enough venting, I just exausted and upset right now. Hope that

some are doing better than i and those doing worse, Im hoping things start

getting better.

take care, Adrienne