Re: broviac placement and the terrible colonoscopy prep

[Guest guest]

Adrienne,

I am glad that your Broviac is in and that they did a double

lumen, as I am sure you will be using it for blood draws, meds. etc. I

am sorry it was such an ordeal, but hopefully you will find it helpful.

Sorry to hear about your colonoscopy prep. Hopefully when you

have to have this done again, your doctor can be better aware of the

situation. A 3 day prep may not be a bad thing. My dad had a three day

prep for his and he doesn't have mito.

Take care!

Smiles,

a

On Thu, 25 Nov 2004 01:15:58 -0000 " Adrienne "

moonchild62579@...> writes:

Hi guys,

Well, I had my double lumen broviac placed in my chest on Friday

morning. It went alright, I actually thought I was only going to get

one lumen but they decided to put in 2 since I'm going to be adding

meds and possibly going on a pain pump and TPN and frequent blood

draws, etc.

My cardiologist and his nurse came to see me soon after to check

what the loop monitor (like an implantable holter monitor in my chest-

had it placed in early Oct) showed in the past 3 wks, well, I have

had 2 clusters of PVCs and one event where my heart stopped beating

for about 5 seconds. They said that thats not too bad but it might

get worse since I am becoming more symptomatic, so they are going to

keep watch on that and I go back to them in a few wks unless my heart

does anymore weird events.

What was supposed to be same day sugery for the broviac I ended up

staying 3 days. They thought I would do a 23 hr stay (what is still

considered out patient but over night) but I had so many problems

with my GI symptoms, pain and several seizures. I finally got home

Sunday night. I was at least sent home with some IV meds, protonix

for my stomach and Dilaudid for pain. I am going to eventually go on

a pain pump but for now the dialuadid is just done through a slow

push.

We had tested me without narcotics to see if it affects my GI

motility issues, it bothers my upper GI but doesnt seem to affect

lower GI, my lower GI is so severe already, doesnt seem to matter.

Oral narcotics were just too much for my upper GI, the IV narcotics

barely bother my GI tract. The IV protronix really helps the reflux

so much, so much better than oral nexium for me. I do have to be

hooked up to it for 30 mins though. So that is just added to the 4

hrs twice a day of fluids. Also with the fluids they plan on adding

carnitor, multivitamins and a few other things possibly. Anyone with

a central line, what have you found that is in the mito cocktail that

you can take through the line? I had to stop so much of the cocktail

due to my GI probs. Now I just take riboflavin and Coq10chews orally.

And my meds I have found I can only take a few orally now too, just

my 2 seizure meds (one is sprinkles though and the other liquid),

liquid lexapro, zofran ODT (disolves but might be changed to IV

because it bothers me now too)....the only pill forms that I take

really are the riboflavin and then florinef which is really small

luckily and also baclofen as needed which isnt often now with the

pain meds. I was also wondering if anyone has found a good liquid

riboflavin? That is the other big problem maker.

Anyways, I spent Monday resting and then I trying to take one day

on a non-clear liquid diet and drinking my ensures again (was on a

clear liquid diet most the time at the hospital). Then tues was prep

time for colonoscopy today (had that and endoscopy and few other

tests planned for today). So I at what they told me- lime jello and

some light popcicles and gingerale. Started the prep at 5pm. Had some

probs with drinking that much prep so fast but did it. They said it

sound start working in 2 hrs but some people it takes up to 6. With

me I had my first BM at 5 hrs and then didnt have another one until

the middle of the night (around 3am), I was in severe pain and it

didnt seem to be working right. I barely was getting much out and my

mom had had one before and she said she was going alot more with hers

and earlier on. It said that I should be done after 2 hrs after first

BM usually and it should be about clear. Well, at 9 am in the morning

it was nowhere close. We called the office, they told me to do 2

enemas. one each 30 mins apart (my appt was at 2pm- i had to fast

from midnight on but luckily was on 2 liters of D10 for 24 hrs from

midnight on). So my mom had to run out to get those and finally got

those totally taken care of just before 11am. I hadnt been able to

sleep at all, I was having some seizures (mild ones). They finally

told me to wait another hr and that they would have him call me at

lunch, well, he never calle, Ive had problems (alot of problems) with

his staff already not understanding my condition at all and telling

me I would be fine fasting over 12 hrs and going without heprin

flushes and swallowing the 2 liter prep in a short time and they were

very rude to my mom, etc. Anyways, as it turns out, no one ever

called us back, my mom finally called at 1pm to tell them we werent

coming in, I have had a few BM's since but its definitely not clear

and Ive barely had anything to eat. Someone at the office did suggest

that maybe I needed a longer prep time (3 day prep?) just was

wondering if anyone has had experiences like this? It was horrid

painful, etc. And Im still in severe pain and definitely not going

back to this dr. My mito dr did talk to him and he had researched

mito some and was being thorough with the testing and all but he

seemed rushed also and didnt listen to all of my symptoms I think, he

actually put me on a med in the beginning for colonic spasms/dirrhea.

I'm going to hopefully be going to a motility specialist at s

hopkins soon that is recommended, I'm seeing a geneticist/interest

there in mid-decemeber and see what he has to say, JH's GI dept is in

the top 3 in the country so we shall see. Thanks for letting me vent

about all this, I was able to finally sleep this afternoon some and

the D10 has helped some I believe. Just was hoping that someone that

has had colonoscopies with severe colon dysmotility would share what

they had to do. please, anything would help. I will keep yall posted.

Hope you all have a great thanksgiving. Thinking of you all.

take care,

Adrienne