Re: Fluid issues

June 12, 2005

Heidi, Your situation is very complex, but I'll share my experience in case

it is any help to you. My nephrologist thinks enteral fluids are superior

(at least for me) and since I already have a working j-tube, that option was

a no-brainer for adding daytime fluids. Infection scares me to death because

for me it can cause major exacerbation from which I do not recover well.

Risk of infection in j-tube is much lower, as I understand it. I've had

other problems with my j-tube, but no infection. Going on 2 years now. Knock

on wood. I realize there is some question about whether your jejunum is

functioning enough to be useful. Mine is, so this solution has been ideal

for both feeding and fluids. My insurance has just approved a new pump,

Zevex Enteralite, which I will use for daytime fluids and nighttime

feedings. The Kangaroo Pet is a pain for ambulating, but you probably know

this. (I can't recall what pump uses.) A fluid bolus via j-tube

sounds like it could be very useful for you. I know Malissa does this a lot.

Maybe she will chime in. Dr. Korson has a fluid bolus protocol worked out

for her, when to do it and how much, etc. I will just be doing a continuous

fluid drip.

Barbara

_____

From: [mailto: ] On Behalf

Of heidicoleman2002

Sent: Sunday, June 12, 2005 7:48 AM

To:

Subject: Fluid issues

Hi all,

I've had kind of a bad week with syncope and low BP's and needing IV

fluid. I tried florinef and I didn't have any improvement in the

BP's but I was much more symptomatic and felt worse and stayed in

bed. Maybe it was part of the objective? But the syncope is getting

worse, with a low irregular heart rate along with inaudible BP, which

goes back to normal with an IV fluid bolus.

So the plan is that I'm going to have a PICC line placed for fluid to

buy us time to decide on a more permanent solution. I have

gastroparesis that hasn't responded to meds yet so oral fluids is out.

So now the question is, J tube or port? Cardiology doesn't care, as

long as I get enough fluid. Metabolism would prefer enteral fluid

and GI is voting for IV. I'm still waiting for nephrology's input but

my guess it'll be the same as cardiology's.

I get a vote too. That's what I'm struggling with. I know IV

hydration works, but do I want to take the risk? 's been

septic and it's no fun. My mom's had central lines since 1975 and

she has very little access left. I'd probably need daily fluid at

least through the summer and that would mean staying accessed.

J tube seems less risky from the infection standpoint but what if my

jejunum doesn't have normal motility? We already experienced that

with . The J tube was put too high and when they tried to

move it they found that she had so many adhesions that moving it

would probably cause obstructions elsewhere. So now she has a j tube

that is of limited usefulness. She never tolerated full feeds

through it. Now she hardly tolerates anything. But it seems like I

could do fluids through a J and then throw the glucerna in there if I

wanted to eat something that I know sits in my stomach for a long

time and not have to worry about my sugar dropping.

Another choice would be to have the j tube and port placed at the

same time, leave the port unaccessed, and give fluid boluses as

needed.

Any thoughts?

Thanks

Heidi

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_____

June 12, 2005

-Hi Barbara

Thanks for your input. A J tube is my first choice. The only

question would be motility. I plan on asking for manometry and a

colonoscopy before they decide on anything having to do with my GI

tract. I have a history of ulcerative colitis as well. With my

coordination problems, I could most likely handle a J tube myself

where I would need help doing anything with IV fluids. I draw the

line at trying an NJ tube though. No way. The 24 hours for the ph

probe drove me batty and I was literally counting the minutes till

the test was over.

I'm not sure how I would recover from a major infection and I'm not

anxious to find out! I've had several pneumonias lately and was able

to stay home and plug along. Gastroenteritis usually buys me a few

days of IV fluids though. I've had 3 C-sections and recovered fine.

had the kangaroo pet, then the zevex entralite. Big

improvement from one to another. Now she has a zevex infinity which

is even better. I'd use the same supply company and ask for one of

those. Much lighter, and the adult bag can be worn as a fanny pack

instead of a backpack.

It's nice to know that other folks are using a J tube for hydration

mainly. Hopefully that'll be an option for me.

Heidi

-- In , " Barbara Seaman "

wrote:

> Heidi, Your situation is very complex, but I'll share my

experience in case

> it is any help to you. My nephrologist thinks enteral fluids are

superior

> (at least for me) and since I already have a working j-tube, that

option was

> a no-brainer for adding daytime fluids. Infection scares me to

death because

> for me it can cause major exacerbation from which I do not recover

well.

> Risk of infection in j-tube is much lower, as I understand it. I've

had

> other problems with my j-tube, but no infection. Going on 2 years

now. Knock

> on wood. I realize there is some question about whether your

jejunum is

> functioning enough to be useful. Mine is, so this solution has been

ideal

> for both feeding and fluids. My insurance has just approved a new

pump,

> Zevex Enteralite, which I will use for daytime fluids and nighttime

> feedings. The Kangaroo Pet is a pain for ambulating, but you

probably know

> this. (I can't recall what pump uses.) A fluid bolus via j-

tube

> sounds like it could be very useful for you. I know Malissa does

this a lot.

> Maybe she will chime in. Dr. Korson has a fluid bolus protocol

worked out

> for her, when to do it and how much, etc. I will just be doing a

continuous

> fluid drip.

>

> Barbara

>

June 12, 2005

Oh the Infinity! I would love to have one, but we decided not to push the

limits and go for what was more realistic for approval. You're wise to ask

for motility testing before a decision is made. Hope this will aid in

reaching a consensus among your docs, one that you will also be comfortable

with. I'll keep you in my thoughts a prayers.

What is your supply company for the Infinity, btw? My case manager ended up

going through Option Care as Apria couldn't handle the Zevex. I'm not sure

what kind of 24-support Option Care offers yet.

B

_____

From: [mailto: ] On Behalf

Of heidicoleman2002

Sent: Sunday, June 12, 2005 10:10 AM

To:

Subject: Re: Fluid issues