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Re: PKD and exercise	Anamarija Richter
	Nov 05, 2009 07:20 PST

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Thank you. That seems to make sense.

On Thu, Nov 5, 2009 at 4:18 PM, Gayle C Willman <gcwil-@gmail.com> wrote:

Re: running - when you exercise, your muscles generate toxins... it's
what makes muscles sore, and it makes your blood somewhat acidic. If
you have poor kidney function, I suppose your body would have a hard
time cleaning out the toxins - but everything I've read about exercise
says there's a "net gain" - exercise increases your body temperature,
which expands capillaries, which - in turn - makes it easier for your
body to clean up any waste products that need to go.

On Thu, Nov 5, 2009 at 9:07 AM, Anamarija Richter
<anamarija-@gmail.com> wrote:

I did not think one could drink too much water, but a doctor I saw in

2005, before I had seen the one in 2007, saw my 24-hour urine output and
said I was "overloading" the kidneys and advised me not to drink this much.
I had even attempted to follow this order, but I was always feeling somehow
weak and generally unwell, which I think was due to dehydration. I do not
think that I drank less than 2.5 - 3 L a day though, but I think I am used
to more. This new doctor (the one who advised against running) was not
saying anything about "overloading" the kidneys so I increased the water
intake again and have felt much better since. However, I am still not sure
if he is right about running.

On Thu, Nov 5, 2009 at 3:02 PM, Gayle C Willman <gcwil-@gmail.com>

wrote:

I don't think you can drink "too much" water - if you check with Diane

or the PKDiet web site, I think you'll find some info about a study re:
drinking LOTS of water - it's actually good for PKD.

Based on my experience, anything that increases circulation seems to

make my kidneys feel better.

On Thu, Nov 5, 2009 at 8:50 AM, Anamarija Richter <

anamarija-@gmail.com> wrote:

Thanks for the answer.
The water is not a problem, I have always drunk a lot of water, and

have often been told by people I drank "too much."

Yes, I forgot to mention that this doctor had recommended to me to lie

down for at least an hour during day, which I cannot really do, as I work
rather far from home. I had an impression that he generally advised against
running as being "bad for kidneys," not necessarily only because of rupture,
but because of fear of dehydration and other possible bad influence, but I
could not really understand what he meant by that.

On Thu, Nov 5, 2009 at 2:40 PM, Gayle C Willman <gcwil-@gmail.com>

wrote:

My nephrologist advised against certain kinds of "high impact"

exercise, like jogging, because very large cysts can tear or rupture. At the
same time, he recommended regular strenuous exercise - walking, swimming,
etc. I bought a Gazelle exercise machine, very low impact but good cardio
results - haven't had any problems with that or any other low impact
exercise.

I also take a daily "kidney nap" for about a half hour or so. I find

that, as the day goes on, gravity comes into play - these short periods of
being horizontal really help a lot!

During the course of an average day, I drink at least 3 L of water,

often more than that. I bought a really good water filter (a Doulton) and
keep a glass of water handy all the time - and have one by the bed to drink
at night.

On Thu, Nov 5, 2009 at 3:41 AM, Anamarija Richter <

anamarija-@gmail.com> wrote:

Dear All,

I was diagnosed with PKD when I was 29 (I am now 36), after about two

years of inexplicable pain episodes in my stomach and flanks. For a while I
had problems that were ascribed to bacteria in the cysts, which caused
frequent urinary tract infections, and which discontinued after some
specially targeted medication.

Two a half years ago, my mother started dyalisis due to PKD and I

decided to do more regular checks myself, as I was not really taking this
condition seriously at all, and thought it was something that was not so
problematic. When I saw a nephrologist, he said that I already have a large
number of cysts and seemingly my kidneys are slightly enlarged. All my
bloodwork is still normal, and I had asked him about the possibilities of
slowing down the process of cyst enlargement. He advised me not to eat too
much meat, which is consistent with what I read in your e-mails, and at
various websites, but he also advised me to avoid strenuous exercise, as it
is allegedly not good for the kidneys, as they only work properly when we
lie down and rest.

I have not been able to find this information anywhere on the

Internet. Though I am aware that Internet may not always be the most
reliable source, I have not even seen it mentioned anywhere. For some time,
I did not do running, but just walking and light bicycle riding, but
slightly more vigorous exercise is rather important to me in order to keep
my weight under control since I quite smoking. By that I do not mean
marathon running at all, but rather jogging on the treadmill with the
occasional minute of fast pace for 30 minutes several times a week. He
explained that due to my condition I am always slightly dehydrated, due to
polyuria (another issue that I was not able to find as the most prominent
PKD symptom), caused by the body not being able to properly "clean" and
therefore excreting more liquid. That is why there is a risk of dehydrating
while doing exercise, due to too much sweat. He advised to take at least 1 L
of water while exercising, and I have noticed that I am indeed finding the
exercise easier if I drink something like 1.5 L during the exercise - this
is on top of the daily intake of water.

Would anybody have more information on this?

Thank you,

Anamarija

On Thu, Oct 29, 2009 at 7:39 PM, Diane <Dia-@pkdiet.com> wrote:
>
Some members have chronic pain from PLD and take opiods which can

lead to constipation. Here is a new drug to ask your docs about if this
applys to you.

>
ACG: Compound Eases Constipation for Opioid Patients

By Kristina Fiore, Staff Writer, MedPage Today
Published: October 28, 2009
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
SAN DIEGO -- An investigational drug increased spontaneous bowel

movements for patients with opioid-induced constipation, researchers said
here.

>
Bowel movements per week increased from about one at baseline to

five or six, depending on the dose used, Lynn Webster, MD, of Lifetree
Clinical Research in Salt Lake City, and colleagues reported at the American
College of Gastroenterology meeting here.

>
The drug, NKTR-118, "increased the frequency of bowel movements

without a reversal of analgesia, and it was reasonably safe with no serious
problems in this study," Webster said.

>He said constipation is a common side effect of opioid therapy,

affecting about 40% to 60% of patients on chronic or acute treatments.

>
The investigational compound is a polymer form of naloxone that

antagonizes peripheral opioid receptors in the gut. It can act selectively,
preventing it from reversing opioid pain management, the researchers said.

>
For their Phase-II, randomized, double-blind, placebo-controlled

trial, the researchers recruited patients on stable regimens of opioids who
consistently had fewer than three spontaneous bowel movements per week.

>
A total of 208 patients were randomized to either a 5-mg, 25-mg, or

50-mg dose of NKTR-118 or placebo for four weeks.

>
The researchers found that spontaneous bowel movements increased

significantly for patients on the 25-mg and 50-mg dose compared with
placebo.

>
Patients on the 25-mg dose increased to five spontaneous bowel

movements per week, up from 1.4 per week at baseline, whereas placebo
patients increased to just 3.1 per week from 1.2 at baseline.

>
Those on the 50-mg dose had six spontaneous bowel movements per

week, up from 1.6 at baseline -- a significant improvement compared with
those on placebo, who increased to 3.3 per week from 1.4 at baseline.

>
Spontaneous bowel movements for patients on the 5-mg dose did not

differ significantly from those on placebo, the researchers said.

>
The median time to first bowel movement was 6.6 hours for those in

the 25-mg dose, compared with 48.6 hours for those on placebo (P=0.001). It
was 2.9 hours for those on the 50-mg dose, compared with 44.9 hours with
placebo (P=0.002).

>
Webster said that there was no change in patient pain, and there

were no changes in the amount of opioid used for any patient.

>
However, dropout rates were significantly higher for the 50-mg dose

of the drug compared with placebo, "probably due to the side effect
profile," Webster said.

>
The most significant side effects associated with the drug were

gastrointestinal in nature, and included nausea and abdominal pain.

>
Side effects were not significantly different for the 5-mg dose

compared with placebo, and there was more nausea in the placebo group for
the 25-mg dose, but side effects were significantly higher in the 50-mg dose
compared with placebo.

>
There was also one serious adverse event in the 50-mg dose, with a

patient admitted to the hospital for excessive abdominal cramping.

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Thank you. That seems to make sense. 
<div class="gmail_quote">On Thu, Nov 5, 2009 at 4:18 PM, Gayle C Willman <<a href="mailto:gcwil-@gmail.com">gcwil-@gmail.com</a>> wrote: 
<blockquote style="BORDER-LEFT: #ccc 1px solid; MARGIN: 0px 0px 0px 0.8ex; PADDING-LEFT: 1ex" class="gmail_quote">Re: running - when you exercise, your muscles generate toxins... it's what makes muscles sore, and it makes your blood somewhat acidic. If 
you have poor kidney function, I suppose your body would have a hard time cleaning out the toxins - but everything I've read about exercise says there's a "net gain" - exercise increases your body temperature, 
which expands capillaries, which - in turn - makes it easier for your body to clean up any waste products that need to go. On Thu, Nov 5, 2009 at 9:07 AM, Anamarija Richter 
<div>
<div></div>
<div class="h5"><<a href="mailto:anamarija-@gmail.com">anamarija-@gmail.com</a>> wrote: > > I did not think one could drink too much water, but a doctor I saw in 2005, before I had seen the one in 2007, saw my 24-hour urine output� and said I was "overloading" the kidneys and advised me not to drink this much. I had even attempted to follow this order, but I was always feeling somehow weak and generally unwell, which I think was due to dehydration. I do not think that I drank less than 2.5 - 3 L a day though, but I think I am used to more. This new doctor (the one who advised against running) was not saying anything about "overloading" the kidneys so I increased the water intake again and have felt much better since. However, I am still not sure if he is right about running.

> On Thu, Nov 5, 2009 at 3:02 PM, Gayle C Willman <<a href="mailto:gcwil-@gmail.com">gcwil-@gmail.com</a>> wrote: >> >> I don't think you can drink "too much" water - if you check with Diane or the PKDiet web site, I think you'll find some info about a study re: drinking LOTS of water - it's actually good for PKD.

Based on my experience, anything that increases circulation seems to make my kidneys feel better. >> >> On Thu, Nov 5, 2009 at 8:50 AM, Anamarija Richter <<a href="mailto:anamarija-@gmail.com">anamarija-@gmail.com</a>> wrote:

>>> Thanks for the answer. >>> The water is not a problem, I have always drunk a lot of water, and have often been told by people I drank "too much." >>> Yes, I forgot to mention that this doctor had recommended to me to lie down for at least an hour during day, which I cannot really do, as I work rather far from home. I had an impression that he generally advised against running as being "bad for kidneys," not necessarily only because of rupture, but because of fear of dehydration and other possible bad influence, but I could not really understand what he meant by that. 
 >>> On Thu, Nov 5, 2009 at 2:40 PM, Gayle C Willman <<a href="mailto:gcwil-@gmail.com">gcwil-@gmail.com</a>> wrote: >>>> >>>> My nephrologist advised against certain kinds of "high impact" exercise, like jogging, because very large cysts can tear or rupture. At the same time, he recommended regular strenuous exercise - walking, swimming, etc. I bought a Gazelle exercise machine, very low impact but good cardio results - haven't had any problems with that or any other low impact exercise.

I also take a daily "kidney nap" for about a half hour or so. I find that, as the day goes on, gravity comes into play - these short periods of being horizontal really help a �lot! >>>> During the course of an average day, I drink at least 3 L of water, often more than that. I bought a really good water filter (a Doulton) and keep a glass of water handy all the time - and have one by the bed to drink at night. 
 >>>> On Thu, Nov 5, 2009 at 3:41 AM, Anamarija Richter <<a href="mailto:anamarija-@gmail.com">anamarija-@gmail.com</a>> wrote: >>>>> >>>>> Dear All,

>>>>> I was diagnosed with PKD when I was 29 (I am now 36), after about two years of inexplicable pain episodes in my stomach and flanks. For a while I had problems that were ascribed to bacteria in the cysts, which caused frequent urinary tract infections, and which discontinued after some specially targeted medication. 
Two a half years ago, my mother started dyalisis due to PKD and I decided to do more regular checks myself, as I was not really taking this condition seriously at all, and thought it was something that was not so problematic. When I saw a nephrologist, he said that I already have a large number of cysts and seemingly my kidneys are slightly enlarged. All my bloodwork is still normal, and I had asked him about the possibilities of slowing down the process of cyst enlargement. He advised me not to eat too much meat, which is consistent with what I read in your e-mails, and at various websites, but he also advised me to avoid strenuous exercise, as it is allegedly not good for the kidneys, as they only work properly when we lie down and rest. 
 >>>>> I have not been able to find this information anywhere on the Internet. Though I am aware that Internet may not always be the most reliable source, I have not even seen it mentioned anywhere. For some time, I did not do running, but just walking and light bicycle riding, but slightly more vigorous exercise is rather important to me in order to keep my weight under control since I quite smoking. By that I do not mean marathon running at all, but rather jogging on the treadmill with the occasional minute of fast pace for 30 minutes several times a week. He explained that due to my condition I am always slightly dehydrated, due to polyuria (another issue that I was not able to find as the most prominent PKD symptom), caused by the body not being able to properly "clean" and therefore excreting more liquid. That is why there is a risk of dehydrating while doing exercise, due to too much sweat. He advised to take at least 1 L of water while exercising, and I have noticed that I am indeed finding the exercise easier if I drink something like 1.5 L during the exercise - this is on top of the daily intake of water. 
 >>>>> Would anybody have more information on this? >>>>> >>>>> Thank you, >>>>> >>>>> Anamarija >>>>> 
 >>>>> On Thu, Oct 29, 2009 at 7:39 PM, Diane <<a href="mailto:Dia-@pkdiet.com">Dia-@pkdiet.com</a>> wrote: >>>>>> >>>>>> Some members have chronic pain from PLD and take opiods which can lead to constipation. Here is a new drug to ask your docs about if this applys to you.

>>>>>> ACG: Compound Eases Constipation for Opioid Patients >>>>>> >>>>>> By�Kristina Fiore, Staff Writer, MedPage Today >>>>>> Published: October 28, 2009 
Reviewed�by�Zalman S. Agus, MD; Emeritus Professor >>>>>> University of Pennsylvania School of Medicine and >>>>>> Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner 
SAN DIEGO -- An investigational drug increased spontaneous bowel movements for patients with opioid-induced constipation, researchers said here. >>>>>> >>>>>> Bowel movements per week increased from about one at baseline to five or six, depending on the dose used, Lynn Webster, MD, of Lifetree Clinical Research in Salt Lake City, and colleagues reported at the American College of Gastroenterology meeting here. 
 >>>>>> The drug, NKTR-118, "increased the frequency of bowel movements without a reversal of analgesia, and it was reasonably safe with no serious problems in this study," Webster said. 
He said constipation is a common side effect of opioid therapy, affecting about 40% to 60% of patients on chronic or acute treatments. >>>>>> >>>>>> The investigational compound is a polymer form of naloxone that antagonizes peripheral opioid receptors in the gut. It can act selectively, preventing it from reversing opioid pain management, the researchers said. 
 >>>>>> For their Phase-II, randomized, double-blind, placebo-controlled trial, the researchers recruited patients on stable regimens of opioids who consistently had fewer than three spontaneous bowel movements per week. 
 >>>>>> A total of 208 patients were randomized to either a 5-mg, 25-mg, or 50-mg dose of NKTR-118 or placebo for four weeks. >>>>>> >>>>>> The researchers found that spontaneous bowel movements increased significantly for patients on the 25-mg and 50-mg dose compared with placebo. 
 >>>>>> Patients on the 25-mg dose increased to five spontaneous bowel movements per week, up from 1.4 per week at baseline, whereas placebo patients increased to just 3.1 per week from 1.2 at baseline. 
 >>>>>> Those on the 50-mg dose had six spontaneous bowel movements per week, up from 1.6 at baseline -- a significant improvement compared with those on placebo, who increased to 3.3 per week from 1.4 at baseline. 
 >>>>>> Spontaneous bowel movements for patients on the 5-mg dose did not differ significantly from those on placebo, the researchers said. >>>>>> >>>>>> The median time to first bowel movement was 6.6 hours for those in the 25-mg dose, compared with 48.6 hours for those on placebo (P=0.001). It was 2.9 hours for those on the 50-mg dose, compared with 44.9 hours with placebo (P=0.002). 
 >>>>>> Webster said that there was no change in patient pain, and there were no changes in the amount of opioid used for any patient. >>>>>> >>>>>> However, dropout rates were significantly higher for the 50-mg dose of the drug compared with placebo, "probably due to the side effect profile," Webster said. 
 >>>>>> The most significant side effects associated with the drug were gastrointestinal in nature, and included nausea and abdominal pain. >>>>>> >>>>>> Side effects were not significantly different for the 5-mg dose compared with placebo, and there was more nausea in the placebo group for the 25-mg dose, but side effects were significantly higher in the 50-mg dose compared with placebo. 
 >>>>>> There was also one serious adverse event in the 50-mg dose, with a patient admitted to the hospital for excessive abdominal cramping. >>>>> >>>>

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