Re: need for hydration-Barbara

[Guest guest]

In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

wheatchild@... writes:

Blood pressure is

also unstable. I do have one question. Did you check serum levels of these

hormones or do a 24-hour urine collection?

Hi Barbara,

ADH (also called vasopressin), renin and aldosterone are all blood tests. My

nephrologist, who works with my mito doctor and also sees all his other

mito/TPN patients, wanted them tested at the point that I was off of the TPN the

longest since the longer I was off of the TPN, the more thirsty I got. The

levels of those hormones were okay, but he also did a urine test for urine

osmolality (concentration) and found that my urine was really concentrated

after

only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't concentrate

so quickly after getting in over 3 L of fluids. This, along with my symptoms,

made him think I needed more fluid.

He also did a 24 hr urine to make sure I wasn't wasting electrolytes and to

make sure I wasn't urinating out more than I got in. For example, some people

who don't concentrate their urine will urinate out more than they drink.

Someone is this situation will urinate out say 4 liters and only drink 3

liters.

They dehydrate very easily b/c their body isn't telling them to hold onto

fluids and concentrate their urine. This could be either from an issue in their

brain not telling their kidneys to concentrate or could be from the kidneys,

themselves, not working correctly.

My mito doc uses ports and g-tubes a lot in patients who have autonomic

dysfunction. If their BP's are low, he tells them to get a bolus of fluid. For

me, if my BP is low or my heartrate is high (which are both signs for me that

my autonomic issues are acting up) then he wants me to bolus in an extra 500

to 1000 cc in addition to what I get in my TPN. If I do this and things

stabilize and then later in the day they start acting up again then he

recommends

another bolus until things stabilize again. I am sure this is an

individualized recommendation, so if your BP is running low and you feel

dehydrated, that

may be something you might want to discuss with your doctor. Could you

tolerate drinking more fluids or getting more through your tube or are you

about

maxed out on what you can take in enterally?

Malisa

[Guest guest]

In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

wheatchild@... writes:

Blood pressure is

also unstable. I do have one question. Did you check serum levels of these

hormones or do a 24-hour urine collection?

Hi Barbara,

ADH (also called vasopressin), renin and aldosterone are all blood tests. My

nephrologist, who works with my mito doctor and also sees all his other

mito/TPN patients, wanted them tested at the point that I was off of the TPN the

longest since the longer I was off of the TPN, the more thirsty I got. The

levels of those hormones were okay, but he also did a urine test for urine

osmolality (concentration) and found that my urine was really concentrated

after

only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't concentrate

so quickly after getting in over 3 L of fluids. This, along with my symptoms,

made him think I needed more fluid.

He also did a 24 hr urine to make sure I wasn't wasting electrolytes and to

make sure I wasn't urinating out more than I got in. For example, some people

who don't concentrate their urine will urinate out more than they drink.

Someone is this situation will urinate out say 4 liters and only drink 3

liters.

They dehydrate very easily b/c their body isn't telling them to hold onto

fluids and concentrate their urine. This could be either from an issue in their

brain not telling their kidneys to concentrate or could be from the kidneys,

themselves, not working correctly.

My mito doc uses ports and g-tubes a lot in patients who have autonomic

dysfunction. If their BP's are low, he tells them to get a bolus of fluid. For

me, if my BP is low or my heartrate is high (which are both signs for me that

my autonomic issues are acting up) then he wants me to bolus in an extra 500

to 1000 cc in addition to what I get in my TPN. If I do this and things

stabilize and then later in the day they start acting up again then he

recommends

another bolus until things stabilize again. I am sure this is an

individualized recommendation, so if your BP is running low and you feel

dehydrated, that

may be something you might want to discuss with your doctor. Could you

tolerate drinking more fluids or getting more through your tube or are you

about

maxed out on what you can take in enterally?

Malisa

[Guest guest]

Malissa, This is SO helpful!! I did see a nephrologist (two in fact) in

2003-4 when I was on TPN and in the hospital so much and they did confirm

that I am losing at least potassium through the kidneys. He wasn't sure

whether to call it renal tubular acidosis or Fanconi's, but one or the

other. We have been replacing K 75 meq since 1998 but had to increase to

100-150 meq in 2003 due to low levels again. Looking back in my records, I

found low K back into the early 80's but no one addressed the issue until I

discovered it in '98 and insisted on help. Yes, I was told my kidneys are

not holding onto fluids, but didn't realize this could originate in either

kidneys or brain. Interesting. I had assumed kidneys. For sure, the low

blood pressure goes with high heart rate. The sicker I get the lower the

blood pressure. For several years now, when I get up after lying down for a

while, the symptoms are very intense. But it doesn't hit immediately.

Instead the real tsunami is delayed a minute or two into walking..sudden,

overwhelming collapse. The primary symptom is heaviness, so totally lead I

couldn't raise my arms if someone put a gun to my head. Heart rate is very

fast, but oddly I don't feel it pounding and know this only by checking my

pulse. Respiration does not usually speed up and I don't get light-headed

either, just this sudden, terrible heaviness and collapse. Do autonomic

symptoms typically worsen when lying down? I know change of position can be

a trigger, but for me the actual lying down and relaxing seems to exacerbate

some symptoms too. Perhaps blood pressure drops more in the supine position?

Yes, fluids do seem to help stabilize these symptoms. I saw a tip about this

on Mitoldies some months back and tried it. I have not tried a bolus of

fluids in my j-tube, but will definitely ask my docs. Good idea. I do get

very bloated trying to get fluids in, but must admit sometimes I just forget

to keep stuffing it in..meds I always remember. Fluids I can forget. It's

all about habit and I need to establish better fluid habits.

Anyway, you've given me a lot to think about. I will print and save.

Bless you!

B

_____

From: Malilibear@...

Sent: Wednesday, February 23, 2005 12:25 AM

To:

Subject: Re: need for hydration-Barbara

In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

wheatchild@... writes:

Blood pressure is

also unstable. I do have one question. Did you check serum levels of these

hormones or do a 24-hour urine collection?

Hi Barbara,

ADH (also called vasopressin), renin and aldosterone are all blood tests.

My

nephrologist, who works with my mito doctor and also sees all his other

mito/TPN patients, wanted them tested at the point that I was off of the TPN

the

longest since the longer I was off of the TPN, the more thirsty I got. The

levels of those hormones were okay, but he also did a urine test for urine

osmolality (concentration) and found that my urine was really concentrated

after

only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't concentrate

so quickly after getting in over 3 L of fluids. This, along with my

symptoms,

made him think I needed more fluid.

He also did a 24 hr urine to make sure I wasn't wasting electrolytes and to

make sure I wasn't urinating out more than I got in. For example, some

people

who don't concentrate their urine will urinate out more than they drink.

Someone is this situation will urinate out say 4 liters and only drink 3

liters.

They dehydrate very easily b/c their body isn't telling them to hold onto

fluids and concentrate their urine. This could be either from an issue in

their

brain not telling their kidneys to concentrate or could be from the

kidneys,

themselves, not working correctly.

My mito doc uses ports and g-tubes a lot in patients who have autonomic

dysfunction. If their BP's are low, he tells them to get a bolus of fluid.

For

me, if my BP is low or my heartrate is high (which are both signs for me

that

my autonomic issues are acting up) then he wants me to bolus in an extra

500

to 1000 cc in addition to what I get in my TPN. If I do this and things

stabilize and then later in the day they start acting up again then he

recommends

another bolus until things stabilize again. I am sure this is an

individualized recommendation, so if your BP is running low and you feel

dehydrated, that

may be something you might want to discuss with your doctor. Could you

tolerate drinking more fluids or getting more through your tube or are you

about

maxed out on what you can take in enterally?

Malisa

[Guest guest]

Malissa, This is SO helpful!! I did see a nephrologist (two in fact) in

2003-4 when I was on TPN and in the hospital so much and they did confirm

that I am losing at least potassium through the kidneys. He wasn't sure

whether to call it renal tubular acidosis or Fanconi's, but one or the

other. We have been replacing K 75 meq since 1998 but had to increase to

100-150 meq in 2003 due to low levels again. Looking back in my records, I

found low K back into the early 80's but no one addressed the issue until I

discovered it in '98 and insisted on help. Yes, I was told my kidneys are

not holding onto fluids, but didn't realize this could originate in either

kidneys or brain. Interesting. I had assumed kidneys. For sure, the low

blood pressure goes with high heart rate. The sicker I get the lower the

blood pressure. For several years now, when I get up after lying down for a

while, the symptoms are very intense. But it doesn't hit immediately.

Instead the real tsunami is delayed a minute or two into walking..sudden,

overwhelming collapse. The primary symptom is heaviness, so totally lead I

couldn't raise my arms if someone put a gun to my head. Heart rate is very

fast, but oddly I don't feel it pounding and know this only by checking my

pulse. Respiration does not usually speed up and I don't get light-headed

either, just this sudden, terrible heaviness and collapse. Do autonomic

symptoms typically worsen when lying down? I know change of position can be

a trigger, but for me the actual lying down and relaxing seems to exacerbate

some symptoms too. Perhaps blood pressure drops more in the supine position?

Yes, fluids do seem to help stabilize these symptoms. I saw a tip about this

on Mitoldies some months back and tried it. I have not tried a bolus of

fluids in my j-tube, but will definitely ask my docs. Good idea. I do get

very bloated trying to get fluids in, but must admit sometimes I just forget

to keep stuffing it in..meds I always remember. Fluids I can forget. It's

all about habit and I need to establish better fluid habits.

Anyway, you've given me a lot to think about. I will print and save.

Bless you!

B

_____

From: Malilibear@...

Sent: Wednesday, February 23, 2005 12:25 AM

To:

Subject: Re: need for hydration-Barbara

In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

wheatchild@... writes:

Blood pressure is

also unstable. I do have one question. Did you check serum levels of these

hormones or do a 24-hour urine collection?

Hi Barbara,

ADH (also called vasopressin), renin and aldosterone are all blood tests.

My

nephrologist, who works with my mito doctor and also sees all his other

mito/TPN patients, wanted them tested at the point that I was off of the TPN

the

longest since the longer I was off of the TPN, the more thirsty I got. The

levels of those hormones were okay, but he also did a urine test for urine

osmolality (concentration) and found that my urine was really concentrated

after

only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't concentrate

so quickly after getting in over 3 L of fluids. This, along with my

symptoms,

made him think I needed more fluid.

He also did a 24 hr urine to make sure I wasn't wasting electrolytes and to

make sure I wasn't urinating out more than I got in. For example, some

people

who don't concentrate their urine will urinate out more than they drink.

Someone is this situation will urinate out say 4 liters and only drink 3

liters.

They dehydrate very easily b/c their body isn't telling them to hold onto

fluids and concentrate their urine. This could be either from an issue in

their

brain not telling their kidneys to concentrate or could be from the

kidneys,

themselves, not working correctly.

My mito doc uses ports and g-tubes a lot in patients who have autonomic

dysfunction. If their BP's are low, he tells them to get a bolus of fluid.

For

me, if my BP is low or my heartrate is high (which are both signs for me

that

my autonomic issues are acting up) then he wants me to bolus in an extra

500

to 1000 cc in addition to what I get in my TPN. If I do this and things

stabilize and then later in the day they start acting up again then he

recommends

another bolus until things stabilize again. I am sure this is an

individualized recommendation, so if your BP is running low and you feel

dehydrated, that

may be something you might want to discuss with your doctor. Could you

tolerate drinking more fluids or getting more through your tube or are you

about

maxed out on what you can take in enterally?

Malisa

[Guest guest]

In a message dated 2/23/2005 1:34:29 PM Eastern Standard Time,

rakshasis@... writes:

Did you have the blood pressure issues addressed by a cardiologist?

I think you're addressing this to Barb, but my BP issues have always been

addressed by a cardiologist. My mito doctor almost always refers his patients

with autonomic issues to a cardiologist for further follow up. My neuro (who

we share) has a cardiologist at Hahnemahn who she has referred other patients

to. I think Ann-Marie saw a cardio there....

Malisa

[Guest guest]

In a message dated 2/23/2005 9:55:58 AM Eastern Standard Time,

wheatchild@... writes:

Do autonomic

symptoms typically worsen when lying down? I know change of position can be

a trigger, but for me the actual lying down and relaxing seems to exacerbate

some symptoms too. Perhaps blood pressure drops more in the supine position?

Hmmm....I don't know the answer to this b/c typically BP issues worse when

standing up. But, I have actually noticed that my BP will be lowest when lying

and highest when standing. I used to actually have high BP when standing

(like 170/100) and they referred to it as orthostatic hypERtension. They said

that typically, people with autonomic dysfunction have the opposite response.

I have had the heavy feeling you describe as well, but have never connected

it directly to autonomic issues. Something for me to think about when it

happens in the future..

Do you have a BP monitor at home? I believe you can get an RX for it and

pick one up at the pharmacy. Some insurances will pay for it, but you can also

buy them without an RX. I would try taking your BP and HR lying, sitting, and

standing (wait at least a minute between each) when you feel symptomatic and

then at another time during the day when you feel okay. If you start to feel

most symptomatic several minutes after standing, leave the BP cuff ON while

you start walking around and then when you start feeling really symptomatic,

then hit the button to start taking it (or if you aren't able to, have

someone with you do it for you). I would also think about whether you have

these

symptoms mostly in the AM shortly after waking up or in the PM, after you have

been active all day. It would also be interesting to see if these are worse

when you have been off of your JT fluids for awhile. If you record your

symptoms, BP, HR, time of day and hydration status for several days and see a

pattern, then you will have a written record to take when you to the doctor so

they can see the trend as well. Sometimes I can't make concrete connections to

things until I start writing down what's going on and then it all seems to

click together.

Malisa

[Guest guest]

I need to improve my hydration as well. My mom used to carry around

a quart jar of water, and drink that. I try to keep a 32 oz. cup of

water around, and drain it by lunch time, fill it up and drain it

again by dinner. Having a 64 oz. container with eight marks on it

might help keep track of your fluids.

Did you have the blood pressure issues addressed by a cardiologist?

Take care,

RH

> Malissa, This is SO helpful!! I did see a nephrologist (two in

fact) in

> 2003-4 when I was on TPN and in the hospital so much and they did

confirm

> that I am losing at least potassium through the kidneys. He wasn't

sure

> whether to call it renal tubular acidosis or Fanconi's, but one or

the

> other. We have been replacing K 75 meq since 1998 but had to

increase to

> 100-150 meq in 2003 due to low levels again. Looking back in my

records, I

> found low K back into the early 80's but no one addressed the issue

until I

> discovered it in '98 and insisted on help. Yes, I was told my

kidneys are

> not holding onto fluids, but didn't realize this could originate in

either

> kidneys or brain. Interesting. I had assumed kidneys. For sure, the

low

> blood pressure goes with high heart rate. The sicker I get the

lower the

> blood pressure. For several years now, when I get up after lying

down for a

> while, the symptoms are very intense. But it doesn't hit

immediately.

> Instead the real tsunami is delayed a minute or two into

walking..sudden,

> overwhelming collapse. The primary symptom is heaviness, so totally

lead I

> couldn't raise my arms if someone put a gun to my head. Heart rate

is very

> fast, but oddly I don't feel it pounding and know this only by

checking my

> pulse. Respiration does not usually speed up and I don't get light-

headed

> either, just this sudden, terrible heaviness and collapse. Do

autonomic

> symptoms typically worsen when lying down? I know change of

position can be

> a trigger, but for me the actual lying down and relaxing seems to

exacerbate

> some symptoms too. Perhaps blood pressure drops more in the supine

position?

> Yes, fluids do seem to help stabilize these symptoms. I saw a tip

about this

> on Mitoldies some months back and tried it. I have not tried a

bolus of

> fluids in my j-tube, but will definitely ask my docs. Good idea. I

do get

> very bloated trying to get fluids in, but must admit sometimes I

just forget

> to keep stuffing it in..meds I always remember. Fluids I can

forget. It's

> all about habit and I need to establish better fluid habits.

>

>

>

> Anyway, you've given me a lot to think about. I will print and save.

>

>

>

> Bless you!

>

> B

>

>

>

> _____

>

> From: Malilibear@a... [mailto:Malilibear@a...]

> Sent: Wednesday, February 23, 2005 12:25 AM

> To:

> Subject: Re: need for hydration-Barbara

>

>

>

>

> In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> wheatchild@n... writes:

>

> Blood pressure is

> also unstable. I do have one question. Did you check serum levels

of these

> hormones or do a 24-hour urine collection?

>

>

>

> Hi Barbara,

> ADH (also called vasopressin), renin and aldosterone are all blood

tests.

> My

> nephrologist, who works with my mito doctor and also sees all his

other

> mito/TPN patients, wanted them tested at the point that I was off

of the TPN

> the

> longest since the longer I was off of the TPN, the more thirsty I

got. The

>

> levels of those hormones were okay, but he also did a urine test

for urine

> osmolality (concentration) and found that my urine was really

concentrated

> after

> only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't

concentrate

> so quickly after getting in over 3 L of fluids. This, along with my

> symptoms,

> made him think I needed more fluid.

>

> He also did a 24 hr urine to make sure I wasn't wasting

electrolytes and to

>

> make sure I wasn't urinating out more than I got in. For example,

some

> people

> who don't concentrate their urine will urinate out more than they

drink.

> Someone is this situation will urinate out say 4 liters and only

drink 3

> liters.

> They dehydrate very easily b/c their body isn't telling them to

hold onto

> fluids and concentrate their urine. This could be either from an

issue in

> their

> brain not telling their kidneys to concentrate or could be from the

> kidneys,

> themselves, not working correctly.

>

> My mito doc uses ports and g-tubes a lot in patients who have

autonomic

> dysfunction. If their BP's are low, he tells them to get a bolus

of fluid.

> For

> me, if my BP is low or my heartrate is high (which are both signs

for me

> that

> my autonomic issues are acting up) then he wants me to bolus in an

extra

> 500

> to 1000 cc in addition to what I get in my TPN. If I do this and

things

> stabilize and then later in the day they start acting up again then

he

> recommends

> another bolus until things stabilize again. I am sure this is an

> individualized recommendation, so if your BP is running low and you

feel

> dehydrated, that

> may be something you might want to discuss with your doctor. Could

you

> tolerate drinking more fluids or getting more through your tube or

are you

> about

> maxed out on what you can take in enterally?

>

> Malisa

>

>

>

[Guest guest]

I need to improve my hydration as well. My mom used to carry around

a quart jar of water, and drink that. I try to keep a 32 oz. cup of

water around, and drain it by lunch time, fill it up and drain it

again by dinner. Having a 64 oz. container with eight marks on it

might help keep track of your fluids.

Did you have the blood pressure issues addressed by a cardiologist?

Take care,

RH

> Malissa, This is SO helpful!! I did see a nephrologist (two in

fact) in

> 2003-4 when I was on TPN and in the hospital so much and they did

confirm

> that I am losing at least potassium through the kidneys. He wasn't

sure

> whether to call it renal tubular acidosis or Fanconi's, but one or

the

> other. We have been replacing K 75 meq since 1998 but had to

increase to

> 100-150 meq in 2003 due to low levels again. Looking back in my

records, I

> found low K back into the early 80's but no one addressed the issue

until I

> discovered it in '98 and insisted on help. Yes, I was told my

kidneys are

> not holding onto fluids, but didn't realize this could originate in

either

> kidneys or brain. Interesting. I had assumed kidneys. For sure, the

low

> blood pressure goes with high heart rate. The sicker I get the

lower the

> blood pressure. For several years now, when I get up after lying

down for a

> while, the symptoms are very intense. But it doesn't hit

immediately.

> Instead the real tsunami is delayed a minute or two into

walking..sudden,

> overwhelming collapse. The primary symptom is heaviness, so totally

lead I

> couldn't raise my arms if someone put a gun to my head. Heart rate

is very

> fast, but oddly I don't feel it pounding and know this only by

checking my

> pulse. Respiration does not usually speed up and I don't get light-

headed

> either, just this sudden, terrible heaviness and collapse. Do

autonomic

> symptoms typically worsen when lying down? I know change of

position can be

> a trigger, but for me the actual lying down and relaxing seems to

exacerbate

> some symptoms too. Perhaps blood pressure drops more in the supine

position?

> Yes, fluids do seem to help stabilize these symptoms. I saw a tip

about this

> on Mitoldies some months back and tried it. I have not tried a

bolus of

> fluids in my j-tube, but will definitely ask my docs. Good idea. I

do get

> very bloated trying to get fluids in, but must admit sometimes I

just forget

> to keep stuffing it in..meds I always remember. Fluids I can

forget. It's

> all about habit and I need to establish better fluid habits.

>

>

>

> Anyway, you've given me a lot to think about. I will print and save.

>

>

>

> Bless you!

>

> B

>

>

>

> _____

>

> From: Malilibear@a... [mailto:Malilibear@a...]

> Sent: Wednesday, February 23, 2005 12:25 AM

> To:

> Subject: Re: need for hydration-Barbara

>

>

>

>

> In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> wheatchild@n... writes:

>

> Blood pressure is

> also unstable. I do have one question. Did you check serum levels

of these

> hormones or do a 24-hour urine collection?

>

>

>

> Hi Barbara,

> ADH (also called vasopressin), renin and aldosterone are all blood

tests.

> My

> nephrologist, who works with my mito doctor and also sees all his

other

> mito/TPN patients, wanted them tested at the point that I was off

of the TPN

> the

> longest since the longer I was off of the TPN, the more thirsty I

got. The

>

> levels of those hormones were okay, but he also did a urine test

for urine

> osmolality (concentration) and found that my urine was really

concentrated

> after

> only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't

concentrate

> so quickly after getting in over 3 L of fluids. This, along with my

> symptoms,

> made him think I needed more fluid.

>

> He also did a 24 hr urine to make sure I wasn't wasting

electrolytes and to

>

> make sure I wasn't urinating out more than I got in. For example,

some

> people

> who don't concentrate their urine will urinate out more than they

drink.

> Someone is this situation will urinate out say 4 liters and only

drink 3

> liters.

> They dehydrate very easily b/c their body isn't telling them to

hold onto

> fluids and concentrate their urine. This could be either from an

issue in

> their

> brain not telling their kidneys to concentrate or could be from the

> kidneys,

> themselves, not working correctly.

>

> My mito doc uses ports and g-tubes a lot in patients who have

autonomic

> dysfunction. If their BP's are low, he tells them to get a bolus

of fluid.

> For

> me, if my BP is low or my heartrate is high (which are both signs

for me

> that

> my autonomic issues are acting up) then he wants me to bolus in an

extra

> 500

> to 1000 cc in addition to what I get in my TPN. If I do this and

things

> stabilize and then later in the day they start acting up again then

he

> recommends

> another bolus until things stabilize again. I am sure this is an

> individualized recommendation, so if your BP is running low and you

feel

> dehydrated, that

> may be something you might want to discuss with your doctor. Could

you

> tolerate drinking more fluids or getting more through your tube or

are you

> about

> maxed out on what you can take in enterally?

>

> Malisa

>

>

>

[Guest guest]

Barbara

Since you are spilling potassium, you might want to ask about having

calcium, magnesium and phosphorus checked as well. I spill all of these

which is fairly common with mito. I feel so much better if all are in good

check. I get them checked every three months or when symptoms like cramping

increase. I only need 40 meq of potassium right now, but need 3000 mg of

magnesium and 1500 mg calcium. I'm trying to get the phosphorus through

diet, but have a nephology appointment in a couple of weeks, so things could

change. It will mean another " jug day " which will be interesting with my

frig. in the garage.

laurie

>

> Reply-To:

> Date: Wed, 23 Feb 2005 08:53:17 -0600

> To: >

> Subject: RE: need for hydration-Barbara

>

>

> Malissa, This is SO helpful!! I did see a nephrologist (two in fact) in

> 2003-4 when I was on TPN and in the hospital so much and they did confirm

> that I am losing at least potassium through the kidneys. He wasn't sure

> whether to call it renal tubular acidosis or Fanconi's, but one or the

> other. We have been replacing K 75 meq since 1998 but had to increase to

> 100-150 meq in 2003 due to low levels again. Looking back in my records, I

> found low K back into the early 80's but no one addressed the issue until I

> discovered it in '98 and insisted on help. Yes, I was told my kidneys are

> not holding onto fluids, but didn't realize this could originate in either

> kidneys or brain. Interesting. I had assumed kidneys. For sure, the low

> blood pressure goes with high heart rate. The sicker I get the lower the

> blood pressure. For several years now, when I get up after lying down for a

> while, the symptoms are very intense. But it doesn't hit immediately.

> Instead the real tsunami is delayed a minute or two into walking..sudden,

> overwhelming collapse. The primary symptom is heaviness, so totally lead I

> couldn't raise my arms if someone put a gun to my head. Heart rate is very

> fast, but oddly I don't feel it pounding and know this only by checking my

> pulse. Respiration does not usually speed up and I don't get light-headed

> either, just this sudden, terrible heaviness and collapse. Do autonomic

> symptoms typically worsen when lying down? I know change of position can be

> a trigger, but for me the actual lying down and relaxing seems to exacerbate

> some symptoms too. Perhaps blood pressure drops more in the supine position?

> Yes, fluids do seem to help stabilize these symptoms. I saw a tip about this

> on Mitoldies some months back and tried it. I have not tried a bolus of

> fluids in my j-tube, but will definitely ask my docs. Good idea. I do get

> very bloated trying to get fluids in, but must admit sometimes I just forget

> to keep stuffing it in..meds I always remember. Fluids I can forget. It's

> all about habit and I need to establish better fluid habits.

>

>

>

> Anyway, you've given me a lot to think about. I will print and save.

>

>

>

> Bless you!

>

> B

>

>

>

> _____

>

> From: Malilibear@...

> Sent: Wednesday, February 23, 2005 12:25 AM

> To:

> Subject: Re: need for hydration-Barbara

>

>

>

>

> In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> wheatchild@... writes:

>

> Blood pressure is

> also unstable. I do have one question. Did you check serum levels of these

> hormones or do a 24-hour urine collection?

>

>

>

> Hi Barbara,

> ADH (also called vasopressin), renin and aldosterone are all blood tests.

> My

> nephrologist, who works with my mito doctor and also sees all his other

> mito/TPN patients, wanted them tested at the point that I was off of the TPN

> the

> longest since the longer I was off of the TPN, the more thirsty I got. The

>

> levels of those hormones were okay, but he also did a urine test for urine

> osmolality (concentration) and found that my urine was really concentrated

> after

> only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't concentrate

> so quickly after getting in over 3 L of fluids. This, along with my

> symptoms,

> made him think I needed more fluid.

>

> He also did a 24 hr urine to make sure I wasn't wasting electrolytes and to

>

> make sure I wasn't urinating out more than I got in. For example, some

> people

> who don't concentrate their urine will urinate out more than they drink.

> Someone is this situation will urinate out say 4 liters and only drink 3

> liters.

> They dehydrate very easily b/c their body isn't telling them to hold onto

> fluids and concentrate their urine. This could be either from an issue in

> their

> brain not telling their kidneys to concentrate or could be from the

> kidneys,

> themselves, not working correctly.

>

> My mito doc uses ports and g-tubes a lot in patients who have autonomic

> dysfunction. If their BP's are low, he tells them to get a bolus of fluid.

> For

> me, if my BP is low or my heartrate is high (which are both signs for me

> that

> my autonomic issues are acting up) then he wants me to bolus in an extra

> 500

> to 1000 cc in addition to what I get in my TPN. If I do this and things

> stabilize and then later in the day they start acting up again then he

> recommends

> another bolus until things stabilize again. I am sure this is an

> individualized recommendation, so if your BP is running low and you feel

> dehydrated, that

> may be something you might want to discuss with your doctor. Could you

> tolerate drinking more fluids or getting more through your tube or are you

> about

> maxed out on what you can take in enterally?

>

> Malisa

>

>

>

[Guest guest]

They check all my electrolytes, blood and urine, and I do take rx

phosphorus--K-Phos Neutral--and calcium for osteoporosis. Yeah, I love those

jugs. My urine has gotten so dilute that a 24-hour collection means 2 jugs.

Whoopee.

B

_____

From: Laureta Fitzgerald

Sent: Wednesday, February 23, 2005 1:21 PM

To:

Subject: Re: need for hydration-Barbara

Barbara

Since you are spilling potassium, you might want to ask about having

calcium, magnesium and phosphorus checked as well. I spill all of these

which is fairly common with mito. I feel so much better if all are in good

check. I get them checked every three months or when symptoms like cramping

increase. I only need 40 meq of potassium right now, but need 3000 mg of

magnesium and 1500 mg calcium. I'm trying to get the phosphorus through

diet, but have a nephology appointment in a couple of weeks, so things could

change. It will mean another " jug day " which will be interesting with my

frig. in the garage.

laurie

>

> Reply-To:

> Date: Wed, 23 Feb 2005 08:53:17 -0600

> To: >

> Subject: RE: need for hydration-Barbara

>

>

> Malissa, This is SO helpful!! I did see a nephrologist (two in fact) in

> 2003-4 when I was on TPN and in the hospital so much and they did confirm

> that I am losing at least potassium through the kidneys. He wasn't sure

> whether to call it renal tubular acidosis or Fanconi's, but one or the

> other. We have been replacing K 75 meq since 1998 but had to increase to

> 100-150 meq in 2003 due to low levels again. Looking back in my records, I

> found low K back into the early 80's but no one addressed the issue until

I

> discovered it in '98 and insisted on help. Yes, I was told my kidneys are

> not holding onto fluids, but didn't realize this could originate in either

> kidneys or brain. Interesting. I had assumed kidneys. For sure, the low

> blood pressure goes with high heart rate. The sicker I get the lower the

> blood pressure. For several years now, when I get up after lying down for

a

> while, the symptoms are very intense. But it doesn't hit immediately.

> Instead the real tsunami is delayed a minute or two into walking..sudden,

> overwhelming collapse. The primary symptom is heaviness, so totally lead I

> couldn't raise my arms if someone put a gun to my head. Heart rate is very

> fast, but oddly I don't feel it pounding and know this only by checking my

> pulse. Respiration does not usually speed up and I don't get light-headed

> either, just this sudden, terrible heaviness and collapse. Do autonomic

> symptoms typically worsen when lying down? I know change of position can

be

> a trigger, but for me the actual lying down and relaxing seems to

exacerbate

> some symptoms too. Perhaps blood pressure drops more in the supine

position?

> Yes, fluids do seem to help stabilize these symptoms. I saw a tip about

this

> on Mitoldies some months back and tried it. I have not tried a bolus of

> fluids in my j-tube, but will definitely ask my docs. Good idea. I do get

> very bloated trying to get fluids in, but must admit sometimes I just

forget

> to keep stuffing it in..meds I always remember. Fluids I can forget. It's

> all about habit and I need to establish better fluid habits.

>

>

>

> Anyway, you've given me a lot to think about. I will print and save.

>

>

>

> Bless you!

>

> B

>

>

>

> _____

>

> From: Malilibear@...

> Sent: Wednesday, February 23, 2005 12:25 AM

> To:

> Subject: Re: need for hydration-Barbara

>

>

>

>

> In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> wheatchild@... writes:

>

> Blood pressure is

> also unstable. I do have one question. Did you check serum levels of

these

> hormones or do a 24-hour urine collection?

>

>

>

> Hi Barbara,

> ADH (also called vasopressin), renin and aldosterone are all blood tests.

> My

> nephrologist, who works with my mito doctor and also sees all his other

> mito/TPN patients, wanted them tested at the point that I was off of the

TPN

> the

> longest since the longer I was off of the TPN, the more thirsty I got.

The

>

> levels of those hormones were okay, but he also did a urine test for

urine

> osmolality (concentration) and found that my urine was really

concentrated

> after

> only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't

concentrate

> so quickly after getting in over 3 L of fluids. This, along with my

> symptoms,

> made him think I needed more fluid.

>

> He also did a 24 hr urine to make sure I wasn't wasting electrolytes and

to

>

> make sure I wasn't urinating out more than I got in. For example, some

> people

> who don't concentrate their urine will urinate out more than they drink.

> Someone is this situation will urinate out say 4 liters and only drink 3

> liters.

> They dehydrate very easily b/c their body isn't telling them to hold onto

> fluids and concentrate their urine. This could be either from an issue in

> their

> brain not telling their kidneys to concentrate or could be from the

> kidneys,

> themselves, not working correctly.

>

> My mito doc uses ports and g-tubes a lot in patients who have autonomic

> dysfunction. If their BP's are low, he tells them to get a bolus of

fluid.

> For

> me, if my BP is low or my heartrate is high (which are both signs for me

> that

> my autonomic issues are acting up) then he wants me to bolus in an extra

> 500

> to 1000 cc in addition to what I get in my TPN. If I do this and things

> stabilize and then later in the day they start acting up again then he

> recommends

> another bolus until things stabilize again. I am sure this is an

> individualized recommendation, so if your BP is running low and you feel

> dehydrated, that

> may be something you might want to discuss with your doctor. Could you

> tolerate drinking more fluids or getting more through your tube or are

you

> about

> maxed out on what you can take in enterally?

>

> Malisa

>

>

>

[Guest guest]

I don't think the cardiologists have addressed the blood pressure

specifically that I can recall. KUMC is crawling with them because they have

a big heart transplant program. The last time I was in hospital, there were

more than a dozen cardiologists in and out of my room. They came in waves.

My last echo was okay and my arrhythmias are not life-threatening, so they

weren't overly concerned. Mainly curious.

B

_____

From: ohgminion

Sent: Wednesday, February 23, 2005 12:28 PM

To:

Subject: Re: need for hydration-Barbara

I need to improve my hydration as well. My mom used to carry around

a quart jar of water, and drink that. I try to keep a 32 oz. cup of

water around, and drain it by lunch time, fill it up and drain it

again by dinner. Having a 64 oz. container with eight marks on it

might help keep track of your fluids.

Did you have the blood pressure issues addressed by a cardiologist?

Take care,

RH

> Malissa, This is SO helpful!! I did see a nephrologist (two in

fact) in

> 2003-4 when I was on TPN and in the hospital so much and they did

confirm

> that I am losing at least potassium through the kidneys. He wasn't

sure

> whether to call it renal tubular acidosis or Fanconi's, but one or

the

> other. We have been replacing K 75 meq since 1998 but had to

increase to

> 100-150 meq in 2003 due to low levels again. Looking back in my

records, I

> found low K back into the early 80's but no one addressed the issue

until I

> discovered it in '98 and insisted on help. Yes, I was told my

kidneys are

> not holding onto fluids, but didn't realize this could originate in

either

> kidneys or brain. Interesting. I had assumed kidneys. For sure, the

low

> blood pressure goes with high heart rate. The sicker I get the

lower the

> blood pressure. For several years now, when I get up after lying

down for a

> while, the symptoms are very intense. But it doesn't hit

immediately.

> Instead the real tsunami is delayed a minute or two into

walking..sudden,

> overwhelming collapse. The primary symptom is heaviness, so totally

lead I

> couldn't raise my arms if someone put a gun to my head. Heart rate

is very

> fast, but oddly I don't feel it pounding and know this only by

checking my

> pulse. Respiration does not usually speed up and I don't get light-

headed

> either, just this sudden, terrible heaviness and collapse. Do

autonomic

> symptoms typically worsen when lying down? I know change of

position can be

> a trigger, but for me the actual lying down and relaxing seems to

exacerbate

> some symptoms too. Perhaps blood pressure drops more in the supine

position?

> Yes, fluids do seem to help stabilize these symptoms. I saw a tip

about this

> on Mitoldies some months back and tried it. I have not tried a

bolus of

> fluids in my j-tube, but will definitely ask my docs. Good idea. I

do get

> very bloated trying to get fluids in, but must admit sometimes I

just forget

> to keep stuffing it in..meds I always remember. Fluids I can

forget. It's

> all about habit and I need to establish better fluid habits.

>

>

>

> Anyway, you've given me a lot to think about. I will print and save.

>

>

>

> Bless you!

>

> B

>

>

>

> _____

>

> From: Malilibear@a... [mailto:Malilibear@a...]

> Sent: Wednesday, February 23, 2005 12:25 AM

> To:

> Subject: Re: need for hydration-Barbara

>

>

>

>

> In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> wheatchild@n... writes:

>

> Blood pressure is

> also unstable. I do have one question. Did you check serum levels

of these

> hormones or do a 24-hour urine collection?

>

>

>

> Hi Barbara,

> ADH (also called vasopressin), renin and aldosterone are all blood

tests.

> My

> nephrologist, who works with my mito doctor and also sees all his

other

> mito/TPN patients, wanted them tested at the point that I was off

of the TPN

> the

> longest since the longer I was off of the TPN, the more thirsty I

got. The

>

> levels of those hormones were okay, but he also did a urine test

for urine

> osmolality (concentration) and found that my urine was really

concentrated

> after

> only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't

concentrate

> so quickly after getting in over 3 L of fluids. This, along with my

> symptoms,

> made him think I needed more fluid.

>

> He also did a 24 hr urine to make sure I wasn't wasting

electrolytes and to

>

> make sure I wasn't urinating out more than I got in. For example,

some

> people

> who don't concentrate their urine will urinate out more than they

drink.

> Someone is this situation will urinate out say 4 liters and only

drink 3

> liters.

> They dehydrate very easily b/c their body isn't telling them to

hold onto

> fluids and concentrate their urine. This could be either from an

issue in

> their

> brain not telling their kidneys to concentrate or could be from the

> kidneys,

> themselves, not working correctly.

>

> My mito doc uses ports and g-tubes a lot in patients who have

autonomic

> dysfunction. If their BP's are low, he tells them to get a bolus

of fluid.

> For

> me, if my BP is low or my heartrate is high (which are both signs

for me

> that

> my autonomic issues are acting up) then he wants me to bolus in an

extra

> 500

> to 1000 cc in addition to what I get in my TPN. If I do this and

things

> stabilize and then later in the day they start acting up again then

he

> recommends

> another bolus until things stabilize again. I am sure this is an

> individualized recommendation, so if your BP is running low and you

feel

> dehydrated, that

> may be something you might want to discuss with your doctor. Could

you

> tolerate drinking more fluids or getting more through your tube or

are you

> about

> maxed out on what you can take in enterally?

>

> Malisa

>

>

>

[Guest guest]

Good suggestions, Malissa. I do have a BP monitor, but not sure it is overly

accurate. The visiting nurse insisted that I get one, but hubby did not want

to buy a " good " model, bless his heart. You're right, I do need to keep a

log..something I tend to put off even though it can clarify. I do know these

symptoms occur with equal intensity any time of day. Just not sure how they

relate to hydration. That's what I need to work on. Connections,

connections..

Thanks again.

B

_____

From: Malilibear@...

Sent: Wednesday, February 23, 2005 2:50 PM

To:

Subject: Re: need for hydration-Barbara

In a message dated 2/23/2005 9:55:58 AM Eastern Standard Time,

wheatchild@... writes:

Do autonomic

symptoms typically worsen when lying down? I know change of position can be

a trigger, but for me the actual lying down and relaxing seems to

exacerbate

some symptoms too. Perhaps blood pressure drops more in the supine

position?

Hmmm....I don't know the answer to this b/c typically BP issues worse when

standing up. But, I have actually noticed that my BP will be lowest when

lying

and highest when standing. I used to actually have high BP when standing

(like 170/100) and they referred to it as orthostatic hypERtension. They

said

that typically, people with autonomic dysfunction have the opposite

response.

I have had the heavy feeling you describe as well, but have never connected

it directly to autonomic issues. Something for me to think about when it

happens in the future..

Do you have a BP monitor at home? I believe you can get an RX for it and

pick one up at the pharmacy. Some insurances will pay for it, but you can

also

buy them without an RX. I would try taking your BP and HR lying, sitting,

and

standing (wait at least a minute between each) when you feel symptomatic

and

then at another time during the day when you feel okay. If you start to

feel

most symptomatic several minutes after standing, leave the BP cuff ON while

you start walking around and then when you start feeling really

symptomatic,

then hit the button to start taking it (or if you aren't able to, have

someone with you do it for you). I would also think about whether you have

these

symptoms mostly in the AM shortly after waking up or in the PM, after you

have

been active all day. It would also be interesting to see if these are worse

when you have been off of your JT fluids for awhile. If you record your

symptoms, BP, HR, time of day and hydration status for several days and see

a

pattern, then you will have a written record to take when you to the doctor

so

they can see the trend as well. Sometimes I can't make concrete connections

to

things until I start writing down what's going on and then it all seems to

click together.

Malisa

[Guest guest]

LOL, you sound like me, last echo was okay and stress test was okay,

and " arrhythmias are not life threatening " . My cardio is funny, I

asked her about carotid blockages and she said " no big deal, if you

have a problem with that, we'll just clean them out " - she sounded

like a plumber!

Take care,

RH

> > Malissa, This is SO helpful!! I did see a nephrologist (two in

> fact) in

> > 2003-4 when I was on TPN and in the hospital so much and they did

> confirm

> > that I am losing at least potassium through the kidneys. He

wasn't

> sure

> > whether to call it renal tubular acidosis or Fanconi's, but one

or

> the

> > other. We have been replacing K 75 meq since 1998 but had to

> increase to

> > 100-150 meq in 2003 due to low levels again. Looking back in my

> records, I

> > found low K back into the early 80's but no one addressed the

issue

> until I

> > discovered it in '98 and insisted on help. Yes, I was told my

> kidneys are

> > not holding onto fluids, but didn't realize this could originate

in

> either

> > kidneys or brain. Interesting. I had assumed kidneys. For sure,

the

> low

> > blood pressure goes with high heart rate. The sicker I get the

> lower the

> > blood pressure. For several years now, when I get up after lying

> down for a

> > while, the symptoms are very intense. But it doesn't hit

> immediately.

> > Instead the real tsunami is delayed a minute or two into

> walking..sudden,

> > overwhelming collapse. The primary symptom is heaviness, so

totally

> lead I

> > couldn't raise my arms if someone put a gun to my head. Heart

rate

> is very

> > fast, but oddly I don't feel it pounding and know this only by

> checking my

> > pulse. Respiration does not usually speed up and I don't get

light-

> headed

> > either, just this sudden, terrible heaviness and collapse. Do

> autonomic

> > symptoms typically worsen when lying down? I know change of

> position can be

> > a trigger, but for me the actual lying down and relaxing seems to

> exacerbate

> > some symptoms too. Perhaps blood pressure drops more in the

supine

> position?

> > Yes, fluids do seem to help stabilize these symptoms. I saw a tip

> about this

> > on Mitoldies some months back and tried it. I have not tried a

> bolus of

> > fluids in my j-tube, but will definitely ask my docs. Good idea.

I

> do get

> > very bloated trying to get fluids in, but must admit sometimes I

> just forget

> > to keep stuffing it in..meds I always remember. Fluids I can

> forget. It's

> > all about habit and I need to establish better fluid habits.

> >

> >

> >

> > Anyway, you've given me a lot to think about. I will print and

save.

> >

> >

> >

> > Bless you!

> >

> > B

> >

> >

> >

> > _____

> >

> > From: Malilibear@a... [mailto:Malilibear@a...]

> > Sent: Wednesday, February 23, 2005 12:25 AM

> > To:

> > Subject: Re: need for hydration-Barbara

> >

> >

> >

> >

> > In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> > wheatchild@n... writes:

> >

> > Blood pressure is

> > also unstable. I do have one question. Did you check serum

levels

> of these

> > hormones or do a 24-hour urine collection?

> >

> >

> >

> > Hi Barbara,

> > ADH (also called vasopressin), renin and aldosterone are all

blood

> tests.

> > My

> > nephrologist, who works with my mito doctor and also sees all his

> other

> > mito/TPN patients, wanted them tested at the point that I was off

> of the TPN

> > the

> > longest since the longer I was off of the TPN, the more thirsty

I

> got. The

> >

> > levels of those hormones were okay, but he also did a urine test

> for urine

> > osmolality (concentration) and found that my urine was really

> concentrated

> > after

> > only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't

> concentrate

> > so quickly after getting in over 3 L of fluids. This, along with

my

> > symptoms,

> > made him think I needed more fluid.

> >

> > He also did a 24 hr urine to make sure I wasn't wasting

> electrolytes and to

> >

> > make sure I wasn't urinating out more than I got in. For example,

> some

> > people

> > who don't concentrate their urine will urinate out more than they

> drink.

> > Someone is this situation will urinate out say 4 liters and only

> drink 3

> > liters.

> > They dehydrate very easily b/c their body isn't telling them to

> hold onto

> > fluids and concentrate their urine. This could be either from an

> issue in

> > their

> > brain not telling their kidneys to concentrate or could be from

the

> > kidneys,

> > themselves, not working correctly.

> >

> > My mito doc uses ports and g-tubes a lot in patients who have

> autonomic

> > dysfunction. If their BP's are low, he tells them to get a bolus

> of fluid.

> > For

> > me, if my BP is low or my heartrate is high (which are both signs

> for me

> > that

> > my autonomic issues are acting up) then he wants me to bolus in

an

> extra

> > 500

> > to 1000 cc in addition to what I get in my TPN. If I do this and

> things

> > stabilize and then later in the day they start acting up again

then

> he

> > recommends

> > another bolus until things stabilize again. I am sure this is an

> > individualized recommendation, so if your BP is running low and

you

> feel

> > dehydrated, that

> > may be something you might want to discuss with your doctor.

Could

> you

> > tolerate drinking more fluids or getting more through your tube

or

> are you

> > about

> > maxed out on what you can take in enterally?

> >

> > Malisa

> >

> >

> >

[Guest guest]

LOL, you sound like me, last echo was okay and stress test was okay,

and " arrhythmias are not life threatening " . My cardio is funny, I

asked her about carotid blockages and she said " no big deal, if you

have a problem with that, we'll just clean them out " - she sounded

like a plumber!

Take care,

RH

> > Malissa, This is SO helpful!! I did see a nephrologist (two in

> fact) in

> > 2003-4 when I was on TPN and in the hospital so much and they did

> confirm

> > that I am losing at least potassium through the kidneys. He

wasn't

> sure

> > whether to call it renal tubular acidosis or Fanconi's, but one

or

> the

> > other. We have been replacing K 75 meq since 1998 but had to

> increase to

> > 100-150 meq in 2003 due to low levels again. Looking back in my

> records, I

> > found low K back into the early 80's but no one addressed the

issue

> until I

> > discovered it in '98 and insisted on help. Yes, I was told my

> kidneys are

> > not holding onto fluids, but didn't realize this could originate

in

> either

> > kidneys or brain. Interesting. I had assumed kidneys. For sure,

the

> low

> > blood pressure goes with high heart rate. The sicker I get the

> lower the

> > blood pressure. For several years now, when I get up after lying

> down for a

> > while, the symptoms are very intense. But it doesn't hit

> immediately.

> > Instead the real tsunami is delayed a minute or two into

> walking..sudden,

> > overwhelming collapse. The primary symptom is heaviness, so

totally

> lead I

> > couldn't raise my arms if someone put a gun to my head. Heart

rate

> is very

> > fast, but oddly I don't feel it pounding and know this only by

> checking my

> > pulse. Respiration does not usually speed up and I don't get

light-

> headed

> > either, just this sudden, terrible heaviness and collapse. Do

> autonomic

> > symptoms typically worsen when lying down? I know change of

> position can be

> > a trigger, but for me the actual lying down and relaxing seems to

> exacerbate

> > some symptoms too. Perhaps blood pressure drops more in the

supine

> position?

> > Yes, fluids do seem to help stabilize these symptoms. I saw a tip

> about this

> > on Mitoldies some months back and tried it. I have not tried a

> bolus of

> > fluids in my j-tube, but will definitely ask my docs. Good idea.

I

> do get

> > very bloated trying to get fluids in, but must admit sometimes I

> just forget

> > to keep stuffing it in..meds I always remember. Fluids I can

> forget. It's

> > all about habit and I need to establish better fluid habits.

> >

> >

> >

> > Anyway, you've given me a lot to think about. I will print and

save.

> >

> >

> >

> > Bless you!

> >

> > B

> >

> >

> >

> > _____

> >

> > From: Malilibear@a... [mailto:Malilibear@a...]

> > Sent: Wednesday, February 23, 2005 12:25 AM

> > To:

> > Subject: Re: need for hydration-Barbara

> >

> >

> >

> >

> > In a message dated 2/22/2005 9:12:02 PM Eastern Standard Time,

> > wheatchild@n... writes:

> >

> > Blood pressure is

> > also unstable. I do have one question. Did you check serum

levels

> of these

> > hormones or do a 24-hour urine collection?

> >

> >

> >

> > Hi Barbara,

> > ADH (also called vasopressin), renin and aldosterone are all

blood

> tests.

> > My

> > nephrologist, who works with my mito doctor and also sees all his

> other

> > mito/TPN patients, wanted them tested at the point that I was off

> of the TPN

> > the

> > longest since the longer I was off of the TPN, the more thirsty

I

> got. The

> >

> > levels of those hormones were okay, but he also did a urine test

> for urine

> > osmolality (concentration) and found that my urine was really

> concentrated

> > after

> > only 6 hrs off of my 3 L bag of TPN. He said that it shouldn't

> concentrate

> > so quickly after getting in over 3 L of fluids. This, along with

my

> > symptoms,

> > made him think I needed more fluid.

> >

> > He also did a 24 hr urine to make sure I wasn't wasting

> electrolytes and to

> >

> > make sure I wasn't urinating out more than I got in. For example,

> some

> > people

> > who don't concentrate their urine will urinate out more than they

> drink.

> > Someone is this situation will urinate out say 4 liters and only

> drink 3

> > liters.

> > They dehydrate very easily b/c their body isn't telling them to

> hold onto

> > fluids and concentrate their urine. This could be either from an

> issue in

> > their

> > brain not telling their kidneys to concentrate or could be from

the

> > kidneys,

> > themselves, not working correctly.

> >

> > My mito doc uses ports and g-tubes a lot in patients who have

> autonomic

> > dysfunction. If their BP's are low, he tells them to get a bolus

> of fluid.

> > For

> > me, if my BP is low or my heartrate is high (which are both signs

> for me

> > that

> > my autonomic issues are acting up) then he wants me to bolus in

an

> extra

> > 500

> > to 1000 cc in addition to what I get in my TPN. If I do this and

> things

> > stabilize and then later in the day they start acting up again

then

> he

> > recommends

> > another bolus until things stabilize again. I am sure this is an

> > individualized recommendation, so if your BP is running low and

you

> feel

> > dehydrated, that

> > may be something you might want to discuss with your doctor.

Could

> you

> > tolerate drinking more fluids or getting more through your tube

or

> are you

> > about

> > maxed out on what you can take in enterally?

> >

> > Malisa

> >

> >

> >

[Guest guest]

Yes, we share a neuro, she is great

She is very good about referring out to other specialists. Although

I am relatively mildly affected, she always takes my symptoms and

issues seriously, and now is treating my son too. I always remember

that she does a lot of great work for ALS patients, so sometimes I

hope that I'm not taking too much of her time from them (although

they do have a separate ALS clinic, part of the ALS clinic).

Take care,

RH

>

> In a message dated 2/23/2005 1:34:29 PM Eastern Standard Time,

> rakshasis@e... writes:

>

> Did you have the blood pressure issues addressed by a

cardiologist?

>

>

>

>

> I think you're addressing this to Barb, but my BP issues have

always been

> addressed by a cardiologist. My mito doctor almost always refers

his patients

> with autonomic issues to a cardiologist for further follow up. My

neuro (who

> we share) has a cardiologist at Hahnemahn who she has referred

other patients

> to. I think Ann-Marie saw a cardio there....

> Malisa

>

>

>

[Guest guest]

Yes, we share a neuro, she is great

She is very good about referring out to other specialists. Although

I am relatively mildly affected, she always takes my symptoms and

issues seriously, and now is treating my son too. I always remember

that she does a lot of great work for ALS patients, so sometimes I

hope that I'm not taking too much of her time from them (although

they do have a separate ALS clinic, part of the ALS clinic).

Take care,

RH

>

> In a message dated 2/23/2005 1:34:29 PM Eastern Standard Time,

> rakshasis@e... writes:

>

> Did you have the blood pressure issues addressed by a

cardiologist?

>

>

>

>

> I think you're addressing this to Barb, but my BP issues have

always been

> addressed by a cardiologist. My mito doctor almost always refers

his patients

> with autonomic issues to a cardiologist for further follow up. My

neuro (who

> we share) has a cardiologist at Hahnemahn who she has referred

other patients

> to. I think Ann-Marie saw a cardio there....

> Malisa

>

>

>

[Guest guest]

In a message dated 2/24/2005 7:08:48 PM Eastern Standard Time,

rakshasis@... writes:

I always remember

that she does a lot of great work for ALS patients, so sometimes I

hope that I'm not taking too much of her time from them (although

they do have a separate ALS clinic, part of the ALS clinic).

Hi RH,

Sometimes I feel like she is more focused on ALS too. She has said that mito

isn't necessarily her specialty many times and her focus is more on ALS, but

I think she has at least 30-40 mito patients now. She did tell me that she's

referring people to metabolics docs in Boston and Baltimore now in addition

to having them see her b/c she feels they understand the metabolics part much

better than she does. For the neuro aspect of things, I haven't found anyone

who seems better than her. I think we're lucky to have her in our area.

Malisa

[Guest guest]

Since I have a weird set of metabolic symptoms (can tolerate intense

aerobic exercise, but not light exercise, and also have a complete

lack of Complex I activity but have relatively light symptoms), I

might ask her for a referral to a metabolics doc. Thanks for

mentioning it!

I think they were shocked when they did my PFT's, and I was above

100% for several stats. My body seems to compensate well for my mito

disease; it would be interesting to find out why *and* find out if

the intense exercise could be damaging me in the long run. I called

a doctor in Texas who is studying the effect of intense exercise on

mito, but she needs to know the exact genetic defect for me to be in

the study, the genetic test results are still pending.

Take care,

RH

>

> In a message dated 2/24/2005 7:08:48 PM Eastern Standard Time,

> rakshasis@e... writes:

>

> I always remember

> that she does a lot of great work for ALS patients, so sometimes I

> hope that I'm not taking too much of her time from them (although

> they do have a separate ALS clinic, part of the ALS clinic).

>

>

>

>

> Hi RH,

> Sometimes I feel like she is more focused on ALS too. She has said

that mito

> isn't necessarily her specialty many times and her focus is more on

ALS, but

> I think she has at least 30-40 mito patients now. She did tell me

that she's

> referring people to metabolics docs in Boston and Baltimore now in

addition

> to having them see her b/c she feels they understand the

metabolics part much

> better than she does. For the neuro aspect of things, I haven't

found anyone

> who seems better than her. I think we're lucky to have her in our

area.

> Malisa

>

>

>

[Guest guest]

RH

The way I understand it, muscles burn glucose to start with and then switch

to burning fatty acids, so if your defect is in complex I, the fatty acids

enter the process after that. I also think that when the exercise is started

relative to symptoms is the key. My mito was too advanced to be able to

tolerate the exercise. My son is able to do strength training and has better

tolerance to exercise than I do. We also have II and III affected in some

way.

laurie

>

> Reply-To:

> Date: Fri, 25 Feb 2005 16:00:50 -0000

> To:

> Subject: Re: need for hydration-Barbara

>

>

>

> Since I have a weird set of metabolic symptoms (can tolerate intense

> aerobic exercise, but not light exercise, and also have a complete

> lack of Complex I activity but have relatively light symptoms), I

> might ask her for a referral to a metabolics doc. Thanks for

> mentioning it!

>

> I think they were shocked when they did my PFT's, and I was above

> 100% for several stats. My body seems to compensate well for my mito

> disease; it would be interesting to find out why *and* find out if

> the intense exercise could be damaging me in the long run. I called

> a doctor in Texas who is studying the effect of intense exercise on

> mito, but she needs to know the exact genetic defect for me to be in

> the study, the genetic test results are still pending.

>

> Take care,

> RH

>

>

>

>>

>> In a message dated 2/24/2005 7:08:48 PM Eastern Standard Time,

>> rakshasis@e... writes:

>>

>> I always remember

>> that she does a lot of great work for ALS patients, so sometimes I

>> hope that I'm not taking too much of her time from them (although

>> they do have a separate ALS clinic, part of the ALS clinic).

>>

>>

>>

>>

>> Hi RH,

>> Sometimes I feel like she is more focused on ALS too. She has said

> that mito

>> isn't necessarily her specialty many times and her focus is more on

> ALS, but

>> I think she has at least 30-40 mito patients now. She did tell me

> that she's

>> referring people to metabolics docs in Boston and Baltimore now in

> addition

>> to having them see her b/c she feels they understand the

> metabolics part much

>> better than she does. For the neuro aspect of things, I haven't

> found anyone

>> who seems better than her. I think we're lucky to have her in our

> area.

>> Malisa

>>

>>

>>

[Guest guest]

Laurie,

dont fatty acids come in at complex II?

[Guest guest]

Yes, did I goof?

laurie

> From: MitomomX3@...

> Reply-To:

> Date: Sat, 26 Feb 2005 07:19:47 EST

> To:

> Subject: Re: need for hydration-Barbara

>

>

> Laurie,

> dont fatty acids come in at complex II?

>

>

>

>

[Guest guest]

no., you commented that it entered after complex I and I was just confirming

it was II.