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

[Guest guest]

Adam

I am sorry that you are going through a rough time.

You might want to talk with them about doing the gall bladder surgery by

laproscopy.

Have your tried drinking Jello water. You mix twice as much water and keep

it out of the frig. It has the liquid, protein and sugar. This is what my

boys would have to drink with they were not able to have milk during an

illness.

laurie

>

> Reply-To:

> Date: Sat, 21 Aug 2004 14:11:33 -0000

> To:

> Subject: Need a little input about a crisis..long post.

>

> 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

>

>

>

>

>

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>

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>

>

>

>

[Guest guest]

Hi Adam,

Sounds like you are under a lot of stress right now, so hopefully I

can say a few things that will be reassuring. Gallbladder surgery

for me wasn't major, assuming they are doing laparoscopy which has

been the standard method for 10+ years now. Four or five little

slits covered with bandaids and that's it. The main risk is

anesthesia and if you have a good anesthesiologist who will listen

to your concerns, your chances are good. My gallbladder was removed

in 1991 (gallstones) and I got along fine. Other than slurred speech

for several days, I had a quick recovery. Major surgery with major

incision, as in my jejunostomy, is another matter altogether and

puts much more stress on the body.

Having had TPN, I have to agree with your doctor that TPN carries a

lot of risks and is an absolute last resort. My GI doc was very

upset when he found out someone else had put me on TPN. He never

allows his patients to be put on TPN because he thinks it is too

dangerous. I won't spell out his concerns here because I don't want

to scare others who are on TPN. But personally, I would not have

agreed to it had I understood all the risks--one of those times when

I regret trusting the advice I was given without checking elsewhere.

If I had it to do over, knowing what I know now, I would not have

agreed to TPN, even though the blood work revealed significant

malnutrition. I also agree with the doc who said drinking apple

juice will provide more nutrition than the standard glucose IV. As

long as you can do it the way nature intended, that is always safer.

IVs have been very hard on my veins over the years, so anymore I try

to avoid if at all possible.

I do have documented hypoglycemia, but my symptoms are not like what

you describe. However, people are different, so it's hard to tell

what was happening to you without some tests at the time. They will

monitor your blood sugar during surgery--at least they do that for

me--so if you do have some problem with glucose, they'll pick it up

and deal with it.

For sure, the waiting is hard--I've been there--but sometimes that

is the only option if that is what the docs think is best. In

situations like this, they do call the shots. If your nutritional

status does change during the waiting and the blood work clearly

shows malnutrition, I'm sure they will consider doing the surgery

sooner. My j-tube was done on an urgent basis on July 4 (2003) due

to crisis--we had planned to wait a couple more months. But things

changed, so they scheduled me immediately. These big institutions

can move fast if necessary.

Hope this helps, and hang in there. The system can be very

frustrating, but it can also be a great blessing. There are some

wonderful people in health care and I've met quite a few of them.

Barbara

> 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

[Guest guest]

Hi Barbara and Laurie,

Thanks Laurie for that idea about the jello. I tried it right away

and I am tolerating it. I think that is going to help. Yes, I am

planning on having laprascopic surgery.

Hi Barbara,

Thanks for the reassurance. Always nice to hear that it can go

well. I am glad that you had a successful outcome and that you have

managed without your gallbladder. I will keep that in mind. :-)

As for the TPN, I am a pretty cautious person. The first time I heard

TPN suggested, the primary care doc I had at that time suggested it

so casually that it didn't raise any red flags to me at all and I

thought it was a wonderful idea. But it was a suggestion for future

solutions of a potential problem. Every time I brought it up to

other doctors though, I quickly noted their reactions were quite

taken aback that a doc would have suggested it to me without a really

serious reason. At the time I thought he just didn't understand how

serious mito probs were and that it was warranted.

But more and more I have had strong reactions from doctors that they

don't want to do TPN. I have read posts here from those on TPN who

have had to deal with major infections and other than that I am not

really well versed in the potential problems. I know there are those

on here that had no choice but to go on TPN, but I don't fall into

that category yet.

So, in your situation, when you say the labwork showed significant

malnutrition, which tests would they be looking at that determines

that? If you did have malnutrition and didn't have the TPN, what do

you think you would have done otherwise?

Yes, it is frustrating, but yes, though I struggle over the decisions

that are made and the fact that so few people in the medical field

have knowledge about mito conditions, I try to see things from their

perspective. They are trying to help and having to do so in a rushed

and stressful environment with a lot riding on what they decide and

do. I usually go overboard in trying to be tolerant and reasonable

and considerate of the medical personnel though. Sometimes to my own

detriment. I find it hard to watch out for myself and advocate for

myself in the face of a lot of resistance and resentment sometimes.

But knowing how rushed and pressured doctors are, you really have to

take responsibility for yourself and keep track of what is being done

and if it is what should be done. Which is hard to do when you are

sick.

I found the article on Managing an Acute Crisis by Cohen in the files

here and reviewed that today, so that makes me feel a little more

informed and on top of things. Thanks very much Barbara...I was

starting to feel pretty stressed and your post has helped me to take

a few deep breaths. :-)

If anyone has any more ideas of what I can try to drink that will

keep my nutritional status up, I would appreciate it. I am

tolerating liquids pretty well. Cider, tomato juice diluted, lemon w

honey in water, now liquid jello, gatorade. I couldn't tolerate non

fat broth or anything with milk in it.

Thanks,

Adam

> Hi Adam,

>

> Sounds like you are under a lot of stress right now, so hopefully I

> can say a few things that will be reassuring. Gallbladder surgery

> for me wasn't major, assuming they are doing laparoscopy which has

> been the standard method for 10+ years now. Four or five little

> slits covered with bandaids and that's it. The main risk is

> anesthesia and if you have a good anesthesiologist who will listen

> to your concerns, your chances are good. My gallbladder was removed

> in 1991 (gallstones) and I got along fine. Other than slurred

speech

> for several days, I had a quick recovery. Major surgery with major

> incision, as in my jejunostomy, is another matter altogether and

> puts much more stress on the body.

>

> Having had TPN, I have to agree with your doctor that TPN carries a

> lot of risks and is an absolute last resort. My GI doc was very

> upset when he found out someone else had put me on TPN. He never

> allows his patients to be put on TPN because he thinks it is too

> dangerous. I won't spell out his concerns here because I don't want

> to scare others who are on TPN. But personally, I would not have

> agreed to it had I understood all the risks--one of those times

when

> I regret trusting the advice I was given without checking

elsewhere.

> If I had it to do over, knowing what I know now, I would not have

> agreed to TPN, even though the blood work revealed significant

> malnutrition. I also agree with the doc who said drinking apple

> juice will provide more nutrition than the standard glucose IV. As

> long as you can do it the way nature intended, that is always

safer.

> IVs have been very hard on my veins over the years, so anymore I

try

> to avoid if at all possible.

>

> I do have documented hypoglycemia, but my symptoms are not like

what

> you describe. However, people are different, so it's hard to tell

> what was happening to you without some tests at the time. They will

> monitor your blood sugar during surgery--at least they do that for

> me--so if you do have some problem with glucose, they'll pick it up

> and deal with it.

>

> For sure, the waiting is hard--I've been there--but sometimes that

> is the only option if that is what the docs think is best. In

> situations like this, they do call the shots. If your nutritional

> status does change during the waiting and the blood work clearly

> shows malnutrition, I'm sure they will consider doing the surgery

> sooner. My j-tube was done on an urgent basis on July 4 (2003) due

> to crisis--we had planned to wait a couple more months. But things

> changed, so they scheduled me immediately. These big institutions

> can move fast if necessary.

>

> Hope this helps, and hang in there. The system can be very

> frustrating, but it can also be a great blessing. There are some

> wonderful people in health care and I've met quite a few of them.

>

> Barbara

>

[Guest guest]

In a message dated 8/21/2004 10:12:25 AM Eastern Standard Time,

adamm321@... writes:

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

Hi Adam,

I just read your most recent post and I am glad that your PCP is going to

help move up the surgery for you. YAY!

The most sensitive indicator of nutrition status is the pre-albumin. Albumin

is a good indicator too but it typically reflects nutrition status from

several weeks prior. Pre-albumin reflects what your nutrition status is that

day.

I think many of the complications that occur with TPN occur over the long

term. Many people go on TPN for several weeks in the hospital when they are post

surgery, in the ICU or have an exacerbation of their illness and do just

fine. This isn't to say that they can't get infections, but I think that the

most severe complications seem to happen when people are on TPN for months or

years. Infections, osteoporosis and liver disease are some of the LONG term

complications. If you need TPN just for a week or so to keep yourself well

before a surgery then it may work well for you.

Also, it is possible that the reaction you had in the car on the way home

could have been blood sugar related. It may have been something else as well,

but I have had my blood sugar drop in reaction to stopping D5. My mito doc

(whom I think we share) said that he had never seen this before and suggested

that we drop the D5 down to D2.5 and again within 1/2 hr of stopping it, my

blood sugar dropped into the 35-50 range. Scary considering the amount of sugar

in D2/5 is barely anything. We're still not sure why this happens to me, but

my body is extremely sensitive to sugar. We have to do ramp down the rates of

any IV's with sugar in it even if it's only a small amount.

That being said, if you are getting surgery, you probably need an IV with

sugar. This is important for people with mito. But, if they stop it, ask them to

check your blood sugar to make sure it's staying up afterwards. Maybe make

sure they stop it at least an hour to two hours before you need to leave so

that you're not in the same situation you were in before.

I hope you can get the surgery done quickly. Mito patients really need to

make sure nutrition is adequate before facing any type of surgery so I think

it's important that they take into consideration the fact that you can't keep

yourself nourished right now.

Please keep us updated.

Malisa

[Guest guest]

Hi Adam,

First, Laurie's suggestion of jello water is great. I had forgotten

that my son was on jello water as a small baby when he was sick and

couldn't eat. It really helped him at the time.

One of the blood tests the docs looked at to assess my nutritional

status was albumin. Mine was low which they interpreted as

inadequate protein absorption. Calcium and other things were also

low, but I'm a bit fuzzy about the details. They did feel the

bloodwork indicated malnutrition. At the time I'd had intractable

nausea 24/7 for 2 years and could not tolerate the anti-nausea

drugs. I'd lost 30 lbs and wasn't overweight to begin with. As for

alternatives to TPN, my GI doc feels that tube feeding is much safer

than TPN, so his patients with serious malnutrition get g or j

tubes. He was out of town at the time and another specialist made

the decision to put me on TPN. I DO get a lot better on TPN. It is

more effective for me than the j-tube feeding, but we just don't

want to risk the life-threatening complications. Another alternative

that we used at times before I had the j-tube was PPN--peripheral

parenteral nutrition. They ran the formula through reg IV instead of

a PICC line. But PPN really burns the veins. Usually it is run at a

very slow rate to make the burning more tolerable, which limits the

amount of calories that can be given. However, I have had as much as

1000 calories in 24 hours through PPN. But it really burns at that

rate.

Cohen's article on Managing Acute Illness is very good and I have it

in my emergency packet. The ER docs have found it helpful,

even " fascinating " one said!

You sound more like yourself in this post, which reassures ME. :-)

This disease can be overwhelming at times. Hope the waiting can be

more peaceful for you now......and keep up those liquids!

Take care,

Barbara

> > Hi Adam,

> >

> > Sounds like you are under a lot of stress right now, so

hopefully I

> > can say a few things that will be reassuring. Gallbladder

surgery

> > for me wasn't major, assuming they are doing laparoscopy which

has

> > been the standard method for 10+ years now. Four or five little

> > slits covered with bandaids and that's it. The main risk is

> > anesthesia and if you have a good anesthesiologist who will

listen

> > to your concerns, your chances are good. My gallbladder was

removed

> > in 1991 (gallstones) and I got along fine. Other than slurred

> speech

> > for several days, I had a quick recovery. Major surgery with

major

> > incision, as in my jejunostomy, is another matter altogether and

> > puts much more stress on the body.

> >

> > Having had TPN, I have to agree with your doctor that TPN

carries a

> > lot of risks and is an absolute last resort. My GI doc was very

> > upset when he found out someone else had put me on TPN. He never

> > allows his patients to be put on TPN because he thinks it is too

> > dangerous. I won't spell out his concerns here because I don't

want

> > to scare others who are on TPN. But personally, I would not have

> > agreed to it had I understood all the risks--one of those times

> when

> > I regret trusting the advice I was given without checking

> elsewhere.

> > If I had it to do over, knowing what I know now, I would not

have

> > agreed to TPN, even though the blood work revealed significant

> > malnutrition. I also agree with the doc who said drinking apple

> > juice will provide more nutrition than the standard glucose IV.

As

> > long as you can do it the way nature intended, that is always

> safer.

> > IVs have been very hard on my veins over the years, so anymore I

> try

> > to avoid if at all possible.

> >

> > I do have documented hypoglycemia, but my symptoms are not like

> what

> > you describe. However, people are different, so it's hard to

tell

> > what was happening to you without some tests at the time. They

will

> > monitor your blood sugar during surgery--at least they do that

for

> > me--so if you do have some problem with glucose, they'll pick it

up

> > and deal with it.

> >

> > For sure, the waiting is hard--I've been there--but sometimes

that

> > is the only option if that is what the docs think is best. In

> > situations like this, they do call the shots. If your

nutritional

> > status does change during the waiting and the blood work clearly

> > shows malnutrition, I'm sure they will consider doing the

surgery

> > sooner. My j-tube was done on an urgent basis on July 4 (2003)

due

> > to crisis--we had planned to wait a couple more months. But

things

> > changed, so they scheduled me immediately. These big

institutions

> > can move fast if necessary.

> >

> > Hope this helps, and hang in there. The system can be very

> > frustrating, but it can also be a great blessing. There are some

> > wonderful people in health care and I've met quite a few of them.

> >

> > Barbara

> >

[Guest guest]

Hi Barbara,

OMG, I can't believe you lived through that 2 year period. Nausea is

the worst! So you aren't having that problem any more? What

happened to change things? Gee and not being able to tolerate the

anti-nausea drugs, too. Isn't that typical of this disorder. I had

the same trouble with every pain medication they gave me after the

last surgery. Sounds like you had a doctor you liked that got you

through that.

I have heard of the j tube and didn't realize it was as much of an

alternative to the TPN and could address serious malnutrition. It

sounds like you made a good decision. I would have chosen the j tube

over the TPN too, once I knew the complications of it. So you tried

the TPN once and didn't do it again, sounds like. You didn't have

any long term problems from it? I hadn't heard of the PPN.

Do you still have to use a j tube? Did you improve from using the j

tube and get off of it?

Well...I wanted to write back, because as the day has gone by I have

found I am not tolerating the liquids after all. Started up the pain

and bloating again about an hour ago. I am going to have to go back

in tomorrow. I just got off the phone from my primary doc's office.

My doc is on maternity leave until October, but I got one of her

assoicates and he was very helpful. I was so glad I called him. I

have been calling the mito specialist exclusively. He told me he has

a few mito patients that he treats. He said it was no longer an

elective surgery for me and it was time to push the issue of having

the surgery right away. So I feel a lot better, that someone is

seeing it the same way I am.

Yes, I made copies of Cohen's article and the list of Meds that are

contraindicated and I am going to take them with me. I wish I had

them with me yesterday, that would have helped. I forgot that there

was an article on that. I haven't been to the website for

so long. What else do you have in your emergency packet? :-) I

have to get better at this.

Thanks Barbara, and I will definitely post to the list when I have

some news.

Adam

> Hi Adam,

>

> First, Laurie's suggestion of jello water is great. I had forgotten

> that my son was on jello water as a small baby when he was sick and

> couldn't eat. It really helped him at the time.

>

> One of the blood tests the docs looked at to assess my nutritional

> status was albumin. Mine was low which they interpreted as

> inadequate protein absorption. Calcium and other things were also

> low, but I'm a bit fuzzy about the details. They did feel the

> bloodwork indicated malnutrition. At the time I'd had intractable

> nausea 24/7 for 2 years and could not tolerate the anti-nausea

> drugs. I'd lost 30 lbs and wasn't overweight to begin with. As for

> alternatives to TPN, my GI doc feels that tube feeding is much

safer

> than TPN, so his patients with serious malnutrition get g or j

> tubes. He was out of town at the time and another specialist made

> the decision to put me on TPN. I DO get a lot better on TPN. It is

> more effective for me than the j-tube feeding, but we just don't

> want to risk the life-threatening complications. Another

alternative

> that we used at times before I had the j-tube was PPN--peripheral

> parenteral nutrition. They ran the formula through reg IV instead

of

> a PICC line. But PPN really burns the veins. Usually it is run at a

> very slow rate to make the burning more tolerable, which limits the

> amount of calories that can be given. However, I have had as much

as

> 1000 calories in 24 hours through PPN. But it really burns at that

> rate.

>

> Cohen's article on Managing Acute Illness is very good and I have

it

> in my emergency packet. The ER docs have found it helpful,

> even " fascinating " one said!

>

> You sound more like yourself in this post, which reassures ME. :-)

> This disease can be overwhelming at times. Hope the waiting can be

> more peaceful for you now......and keep up those liquids!

>

> Take care,

> Barbara

>

>

>

>

[Guest guest]

I wanted to add my experience. I have had a lot of trouble with

surgeries in the past, but my last one, which was gallbladder, was much

better because I was put on D5 from the moment I got to the hospital

almost until I left. I also had IV Carnitor during the surgery and I

feel that REALLY helped. It was something they had to order, because

the hospital pharmacy doesn't normally carry it, but you may want to

request it.

Oh, one thing about the recovery that you may or may not be told, since

they have to pump you full of air to do a lap, you want to stay away

from ANY carbonated drinks for at least a week. They may offer you pop

after the surgery, don't drink it as it will cause a great deal of

unnecessary discomfort.

Good luck!

adamm4321 wrote:

>Hi Barbara,

>

>OMG, I can't believe you lived through that 2 year period. Nausea is

>the worst! So you aren't having that problem any more? What

>happened to change things? Gee and not being able to tolerate the

>anti-nausea drugs, too. Isn't that typical of this disorder. I had

>the same trouble with every pain medication they gave me after the

>last surgery. Sounds like you had a doctor you liked that got you

>through that.

>

>I have heard of the j tube and didn't realize it was as much of an

>alternative to the TPN and could address serious malnutrition. It

>sounds like you made a good decision. I would have chosen the j tube

>over the TPN too, once I knew the complications of it. So you tried

>the TPN once and didn't do it again, sounds like. You didn't have

>any long term problems from it? I hadn't heard of the PPN.

>

>Do you still have to use a j tube? Did you improve from using the j

>tube and get off of it?

>

>Well...I wanted to write back, because as the day has gone by I have

>found I am not tolerating the liquids after all. Started up the pain

>and bloating again about an hour ago. I am going to have to go back

>in tomorrow. I just got off the phone from my primary doc's office.

>My doc is on maternity leave until October, but I got one of her

>assoicates and he was very helpful. I was so glad I called him. I

>have been calling the mito specialist exclusively. He told me he has

>a few mito patients that he treats. He said it was no longer an

>elective surgery for me and it was time to push the issue of having

>the surgery right away. So I feel a lot better, that someone is

>seeing it the same way I am.

>

>Yes, I made copies of Cohen's article and the list of Meds that are

>contraindicated and I am going to take them with me. I wish I had

>them with me yesterday, that would have helped. I forgot that there

>was an article on that. I haven't been to the website for

>so long. What else do you have in your emergency packet? :-) I

>have to get better at this.

>

>Thanks Barbara, and I will definitely post to the list when I have

>some news.

>

>Adam

>

>

>

>

>

>

>>Hi Adam,

>>

>>First, Laurie's suggestion of jello water is great. I had forgotten

>>that my son was on jello water as a small baby when he was sick and

>>couldn't eat. It really helped him at the time.

>>

>>One of the blood tests the docs looked at to assess my nutritional

>>status was albumin. Mine was low which they interpreted as

>>inadequate protein absorption. Calcium and other things were also

>>low, but I'm a bit fuzzy about the details. They did feel the

>>bloodwork indicated malnutrition. At the time I'd had intractable

>>nausea 24/7 for 2 years and could not tolerate the anti-nausea

>>drugs. I'd lost 30 lbs and wasn't overweight to begin wit h.Asfor

>>alternatives to TPN, my GI doc feels that tube feeding is much

>>

>>

>safer

>

>

>>than TPN, so his patients with serious malnutrition get g or j

>>tubes. He was out of town at the time and another specialist made

>>the decision to put me on TPN. I DO get a lot better on TPN. It is

>>more effective for me than the j-tube feeding, but we just don't

>>want to risk the life-threatening complications. Another

>>

>>

>alternative

>

>

>>that we used at times before I had the j-tube was PPN--peripheral

>>parenteral nutrition. They ran the formula through reg IV instead

>>

>>

>of

>

>

>>a PICC line. But PPN really burns the veins. Usually it is run at a

>>very slow rate to make the burning more tolerable, which limits the

>>amount of calories that can be given. However, I have had as much

>>

>>

>as

>

>

>>1000 calories in 24 hours through PPN. But it really burns at that

>>rate.

>>

>>Cohen's article on Managing Acute Illness is very good and I have

>>

>>

>it

>

>

>>in my emergency packet. The ER docs have found it helpful,

>>even " fascinating " one said!

>>

>>You sound more like yourself in this post, which reassures ME. :-)

>>This disease can be overwhelming at times. Hope the waiting can be

>>more peaceful for you now......and keep up those liquids!

>>

>>Take care,

>>Barbara

>>

>>

>>

>>

>>

>>

>

>

>

>

>

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entirely responsible for its content. List members are reminded of their

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>

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>

>

[Guest guest]

You are full of questions!! Yes, I still have the j-tube. It is

permanent for me. Two reasons: 1. Can't eat adequate calories due to

GI dysfunction. 2. Can't tolerate overnight fast without triggering

seizures and/or stroke-like events. The nausea is a long long story

I won't go into except to say it was probably caused by metabolic

changes in the brain stem which are much better when my brain gets

fed overnight. But I do have a benign brain tumor which DiMauro

thought might be causing the nausea. Local docs didn't. The nausea

is much better with j-tube feeding every night. Nausea was always

the worst early morning, typical of nausea of central (brain)

origin.

I had TPN twice, did have complications the second time. We were

desperately trying to avoid the major surgery--jejunostomy. My GI

doc would not consider the " punch-through " method which is what a

lot of patients get. He believes the only way to be sure the tube is

placed correctly is through a big incision.

Glad your doc is considering doing the surgery sooner. Hope it goes

well for you and solves your problem.

Take care,

Barbara

> > Hi Adam,

> >

> > First, Laurie's suggestion of jello water is great. I had

forgotten

> > that my son was on jello water as a small baby when he was sick

and

> > couldn't eat. It really helped him at the time.

> >

> > One of the blood tests the docs looked at to assess my

nutritional

> > status was albumin. Mine was low which they interpreted as

> > inadequate protein absorption. Calcium and other things were

also

> > low, but I'm a bit fuzzy about the details. They did feel the

> > bloodwork indicated malnutrition. At the time I'd had

intractable

> > nausea 24/7 for 2 years and could not tolerate the anti-nausea

> > drugs. I'd lost 30 lbs and wasn't overweight to begin with. As

for

> > alternatives to TPN, my GI doc feels that tube feeding is much

> safer

> > than TPN, so his patients with serious malnutrition get g or j

> > tubes. He was out of town at the time and another specialist

made

> > the decision to put me on TPN. I DO get a lot better on TPN. It

is

> > more effective for me than the j-tube feeding, but we just don't

> > want to risk the life-threatening complications. Another

> alternative

> > that we used at times before I had the j-tube was PPN--

peripheral

> > parenteral nutrition. They ran the formula through reg IV

instead

> of

> > a PICC line. But PPN really burns the veins. Usually it is run

at a

> > very slow rate to make the burning more tolerable, which limits

the

> > amount of calories that can be given. However, I have had as

much

> as

> > 1000 calories in 24 hours through PPN. But it really burns at

that

> > rate.

> >

> > Cohen's article on Managing Acute Illness is very good and I

have

> it

> > in my emergency packet. The ER docs have found it helpful,

> > even " fascinating " one said!

> >

> > You sound more like yourself in this post, which reassures ME. :-

)

> > This disease can be overwhelming at times. Hope the waiting can

be

> > more peaceful for you now......and keep up those liquids!

> >

> > Take care,

> > Barbara

> >

> >

> >

> >

[Guest guest]

Very helpful, thks Malissa. Sure is great to have a nurse in the

group.

Beyond sepsis, my GI doc was most concerned with blood clots as a

complication of TPN. His line was always, " With TPN you never know

if you're going to wake up in the morning. You can throw a clot in

the night and die. " Another favorite line, " TPN kills, " always

delivered with great authority. Granted he is opinionated and can

lean to exaggeration at times, but given his international

reputation and status as chair of dept at a large teaching hospital,

his warnings made us very wary. I know you and other patients have

been on TPN for years, so that knowledge always tempered his dire

predictions. :-)

B

> Hi Adam,

> I just read your most recent post and I am glad that your PCP is

going to

> help move up the surgery for you. YAY!

>

> The most sensitive indicator of nutrition status is the pre-

albumin. Albumin

> is a good indicator too but it typically reflects nutrition status

from

> several weeks prior. Pre-albumin reflects what your nutrition

status is that day.

> I think many of the complications that occur with TPN occur over

the long

> term. Many people go on TPN for several weeks in the hospital when

they are post

> surgery, in the ICU or have an exacerbation of their illness and

do just

> fine. This isn't to say that they can't get infections, but I

think that the

> most severe complications seem to happen when people are on TPN

for months or

> years. Infections, osteoporosis and liver disease are some of the

LONG term

> complications. If you need TPN just for a week or so to keep

yourself well

> before a surgery then it may work well for you.

>

> Also, it is possible that the reaction you had in the car on the

way home

> could have been blood sugar related. It may have been something

else as well,

> but I have had my blood sugar drop in reaction to stopping D5. My

mito doc

> (whom I think we share) said that he had never seen this before

and suggested

> that we drop the D5 down to D2.5 and again within 1/2 hr of

stopping it, my

> blood sugar dropped into the 35-50 range. Scary considering the

amount of sugar

> in D2/5 is barely anything. We're still not sure why this happens

to me, but

> my body is extremely sensitive to sugar. We have to do ramp down

the rates of

> any IV's with sugar in it even if it's only a small amount.

>

> That being said, if you are getting surgery, you probably need an

IV with

> sugar. This is important for people with mito. But, if they stop

it, ask them to

> check your blood sugar to make sure it's staying up afterwards.

Maybe make

> sure they stop it at least an hour to two hours before you need

to leave so

> that you're not in the same situation you were in before.

>

> I hope you can get the surgery done quickly. Mito patients really

need to

> make sure nutrition is adequate before facing any type of surgery

so I think

> it's important that they take into consideration the fact that you

can't keep

> yourself nourished right now.

>

> Please keep us updated.

> Malisa

>

>

>

>

>

>

[Guest guest]

Dear Adam,

I am so sorry for all of the pain, trouble and frustration you are

enduring.

Do you have a glucose monitor for your blood sugar picture? If not, it

might be a good idea to procure one.

Are you anywhere near New York City; I have some excellent docs there:

endocrinologist, gi doc, and neurologists.

I hope and pray that you get some real help---soon.

If I can help you with the docs' info, please email me privately.

Take care.

S.

Northeast PA

PS: Have they considered that new gastric pacemaker for you? At present,

the hospital where they have it in NYC is the one where I am seen.

[Guest guest]

In a message dated 8/22/2004 12:09:28 PM Eastern Standard Time,

wheatchild@... writes:

His line was always, " With TPN you never know

if you're going to wake up in the morning. You can throw a clot in

the night and die. " Another favorite line, " TPN kills, " always

delivered with great authority. Granted he is opinionated and can

lean to exaggeration at times, but given his international

reputation and status as chair of dept at a large teaching hospital,

his warnings made us very wary.

Hi Barbara,

Yes....I am really lucky to have had a good experience with TPN. When I

first started on TPN, I had doctors who told me some of the same things except

they emphasized that my liver would be destroyed from it. They were very

reluctant to put me on TPN at first but eventually realized it was necessary to

keep me alive. Thankfully, I have done very well on it over the years and my

liver is extremely healthy.

I do know of a few people who have gotten blood clots from central lines,

but none have died from them. Usually they are small enough that they can be

dissolved with clot busting agents. Getting a clot wouldn't be a result of the

TPN itself, but the central line that is needed for the TPN. The risks of

infection and liver damage from the TPN itself seem to be much more prevalent

than those from a clot unless someone has a history of a clotting disorder.

Your GI's statement of " TPN kills " made me laugh and roll my eyes,

especially after you said he can exaggerate sometimes. While he's right, TPN

isn't

the first line of treatment for malnutrition, if someone needs it, it can be

lifesaving. I know so many success stories of people on long term TP

N....children who are now young adults who have lived on it since

birth....people who

are in their forties who started on it in their early twenties.....who are all

thriving and living their lives and I really see it is a gift in many

circumstances. I talk to new moms of children who are starting on TPN who are

scared

to death and I always tell them what a blessing it has been in my life. It

has given me the strength and ability to do all that I have wanted to.

So, while your GI is halfway right....TPN has risks that EVERY person should

consider....he should also be introduced to the many people who are alive

today b/c of the lifegiving gifts that TPN has to offer to those who can't get

nutrition in orally or through a tube.

There is an organization that is fabulous for people on tube feeds and TPN

(I have probably listed it on here before).. _www.oley.org_

(http://www.oley.org)

I'm glad you and others know that there are risks and benefits to everything

and have the knowledge to weigh them before deciding on a medication or

treatment. Knowledge certainly is power!

Malisa

[Guest guest]

In a message dated 8/23/2004 3:13:49 PM Eastern Standard Time,

justagram14@... writes:

Is that you in the picture?

There is an organization that is fabulous for people on tube feeds and TPN

(I have probably listed it on here before).. _www.oley.org_

(http://www.oley.orghttp://www.oley.org/>)

Hi Alice,

Yep...that's me about 4 yrs ago!

Malisa

[Guest guest]

Malisa,

Is that you in the picture?

There is an organization that is fabulous for people on tube feeds and TPN

(I have probably listed it on here before).. _www.oley.org_

(http://www.oley.orghttp://www.oley.org/>)

Malisa