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Rise in Creatinine
|
|
| Charles Torrisi 2006-06-27, 8:28 am |
| My creatinine level is slowly rising every time I go to the Nephrologist
and is up to a 2.5. Even though that is not an alarming rate, I think
if everytime it goes up a point asI get older, I will be probably facing
dialysis some day. Polycystic kidneys ran in my family, and my son who
is only 48 is on dialysis now, is a good patient,, feels so much better
with it, and is going on the transplant list in August in Boston, I feel
I may not be so good with it as he. So, on the suggestion that I read
that book, from all the other posts, (Coping with Kidney Disease) , I
started a low protein diet and when I go see my doctor in a month, will
go over the blood tests item by item and see if I can work with his
nutritionist, to see if I am lacking some vitamins or whatever. I am
hoping to bring my bun level under 59, and does anyone know if
creatinine ever goes down, instead of climbing up. That is my goal. I
enjoy reading all the posts but don't enjoy reading the bashing that
goes on and the name calling. We are all here to support each other, if
that keeps going on, people will lose interest. Is there anyone out
there with polycystic kidney disease that is in their 70's and not on
dialysis, that would like to contribute their thoughts? Keep your
experiences posted. Not only are they informative, but intresting and
supportive too. Ange
Have a great day!!
| |
| Jason Johnson 2006-06-27, 4:27 pm |
| In article <24871-44A11466-727@storefull-3311.bay.webtv.net>,
CTORRISI56@webtv.net (Charles Torrisi) wrote:
My creatinine level is slowly rising every time I go to the Nephrologist
and is up to a 2.5. Even though that is not an alarming rate, I think
if everytime it goes up a point asI get older, I will be probably facing
dialysis some day. Polycystic kidneys ran in my family, and my son who
is only 48 is on dialysis now, is a good patient,, feels so much better
with it, and is going on the transplant list in August in Boston, I feel
I may not be so good with it as he. So, on the suggestion that I read
that book, from all the other posts, (Coping with Kidney Disease) , I
started a low protein diet and when I go see my doctor in a month, will
go over the blood tests item by item and see if I can work with his
nutritionist, to see if I am lacking some vitamins or whatever. I am
hoping to bring my bun level under 59, and does anyone know if
creatinine ever goes down, instead of climbing up. That is my goal. I
enjoy reading all the posts but don't enjoy reading the bashing that
goes on and the name calling. We are all here to support each other, if
that keeps going on, people will lose interest. Is there anyone out
there with polycystic kidney disease that is in their 70's and not on
dialysis, that would like to contribute their thoughts? Keep your
experiences posted. Not only are they informative, but intresting and
supportive too. Ange
Have a great day!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Charles,
I am not a doctor. Since Polycystic Kidney Disease runs in your family, I
suggest that you ask the Nephrologist to determine whether or not you have
polycystic kidney disease.
I can't speak for other people but I reviewed every blood test that I have
had during the past 15 years. The creatinine level remained almost the
same during that same time period. The only time that it changed was when
I took statins. It went from my average of 1.1 to 1.7 during a three month
period. After I stopped taking statins, it went back down to 1.1.
I have been following a low protein diet and an exercise program and the
creatinine level has remained the same--1.1. I have had metabolic problems
(high acid levels) ever since my experiences with statins. It's my guess
that the statins done some minor damage to my kidneys but can't prove it.
I just know that the metabolic problem started directly after my
creatinine level rose from 1.1 to 1.7 during a three month period. I had
kidney disease when I was a baby. One of my doctors told me that I had
weak kidneys since my creatinine level has always been on the high side of
normal for my entire life.
I suggest that you request a biopsy of your kidneys.
I dont' worry about the net cops that you mentioned. Try to ignore them.
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
|
| I certainly wouldn't get a biopsy with only a creatnine of 2.5 and definate
proof that the labs are showing something going on. There are risks
involved with a kidney biopsy one being that the kidney can be damaged and
deteriorate even faster. I'm not saying if the doctor says you need it not
to get it but just make damned sure who ever is doing the needle biopsy is
very experienced with it.
Celeste
"Jason Johnson" <jason@nospam.com> wrote in message
news:jason-2706060925090001@66-52-22-54.lsan.pw-dia.impulse.net...
> In article <24871-44A11466-727@storefull-3311.bay.webtv.net>,
> CTORRISI56@webtv.net (Charles Torrisi) wrote:
>
> My creatinine level is slowly rising every time I go to the Nephrologist
> and is up to a 2.5. Even though that is not an alarming rate, I think
> if everytime it goes up a point asI get older, I will be probably facing
> dialysis some day. Polycystic kidneys ran in my family, and my son who
> is only 48 is on dialysis now, is a good patient,, feels so much better
> with it, and is going on the transplant list in August in Boston, I feel
> I may not be so good with it as he. So, on the suggestion that I read
> that book, from all the other posts, (Coping with Kidney Disease) , I
> started a low protein diet and when I go see my doctor in a month, will
> go over the blood tests item by item and see if I can work with his
> nutritionist, to see if I am lacking some vitamins or whatever. I am
> hoping to bring my bun level under 59, and does anyone know if
> creatinine ever goes down, instead of climbing up. That is my goal. I
> enjoy reading all the posts but don't enjoy reading the bashing that
> goes on and the name calling. We are all here to support each other, if
> that keeps going on, people will lose interest. Is there anyone out
> there with polycystic kidney disease that is in their 70's and not on
> dialysis, that would like to contribute their thoughts? Keep your
> experiences posted. Not only are they informative, but intresting and
> supportive too. Ange
>
> Have a great day!!
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
> Charles,
> I am not a doctor. Since Polycystic Kidney Disease runs in your family, I
> suggest that you ask the Nephrologist to determine whether or not you have
>
> polycystic kidney disease.
> I can't speak for other people but I reviewed every blood test that I have
> had during the past 15 years. The creatinine level remained almost the
> same during that same time period. The only time that it changed was when
> I took statins. It went from my average of 1.1 to 1.7 during a three month
> period. After I stopped taking statins, it went back down to 1.1.
> I have been following a low protein diet and an exercise program and the
> creatinine level has remained the same--1.1. I have had metabolic problems
> (high acid levels) ever since my experiences with statins. It's my guess
> that the statins done some minor damage to my kidneys but can't prove it.
> I just know that the metabolic problem started directly after my
> creatinine level rose from 1.1 to 1.7 during a three month period. I had
> kidney disease when I was a baby. One of my doctors told me that I had
> weak kidneys since my creatinine level has always been on the high side of
> normal for my entire life.
> I suggest that you request a biopsy of your kidneys.
> I dont' worry about the net cops that you mentioned. Try to ignore them.
> Jason
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
|
| In article <24871-44A11466-727@storefull-3311.bay.webtv.net>,
CTORRISI56@webtv.net (Charles Torrisi) wrote:
> My creatinine level is slowly rising every time I go to the Nephrologist
> and is up to a 2.5. Even though that is not an alarming rate, I think
> if everytime it goes up a point asI get older, I will be probably facing
> dialysis some day. Polycystic kidneys ran in my family, and my son who
> is only 48 is on dialysis now, is a good patient,, feels so much better
> with it, and is going on the transplant list in August in Boston, I feel
> I may not be so good with it as he. So, on the suggestion that I read
> that book, from all the other posts, (Coping with Kidney Disease) , I
> started a low protein diet and when I go see my doctor in a month, will
> go over the blood tests item by item and see if I can work with his
> nutritionist, to see if I am lacking some vitamins or whatever.
When you visit your nephrologist, have a chat with him/her about low
protein diets. There have been many recent long-term studies of
low-protein diets and their effect on those with kidney disease, and
they have found to be either not useful or detrimental in slowing the
progression of kidney disease, and most nephrologists no longer rely on
them, especially for nephrotic patients.
Low-protein diets used to be de rigeur for kidney patients, and it is
possible to find that advice in older patient-oriented materials, such
as the book you mentioned, but newer research among professionals in the
field is making that advice out of date.
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
|
| I concur what was said about the possible need for a biopsy. The
nephrologist will not ask for one just to get it, he will only have it
done if there is something that needs to be determined. If you have
PCD, it will show up in an ultrasound. Much less intrusive, and
certainly safer.
As to the use or non use of low protein diets, what was said is true.
The current protocol calls for not using low protien diets. It has been
shown that the only real thing that happens when a patient uses this
diet is that when they start dialysis, the patient is sicker, usually
suffering from malnutrition. Any benefit from a slight reduction in
BUN, such as a small amount less of nausea, are far outweighed by the
detrimental loss of protein in the muscles. This can be followed by
measuring Serum Albumen levels, a simple blood test. Albumen levels
below 3.5 are considered indications of malnutrition. Don't get me
wrong, until you start dialysis, a slight decrease in protein intake
would not be bad, just don't go too far. Once on dialysis, you will
have to increase protein intake, as some protein is dialyzed out during
treatments, and there is a statistical association with lower Albumen(>
3.5) and premature death in dialysis patients.
I understand the desire to remain off of dialysis, but the simple truth
is that the best way to approach this is to either find a living donor
for a transplant, or when it becomes difficult to tolerate the way you
feel, to begin dialysis. It does take a while to get used to it, and it
is not anything to look forward to, but the situation could be much much
worse. Trying to avoid it all costs will only lead to bigger problems,
such as ending up hospitalized for months to recover from the
malnutrition. Just remember to keep talking, learning and being
proactive. This will make you feel at least partly in control, and
maybe will help to speed up the adjustment.
Also, please don't consider the professionals "enemies". They are not
out to get you, nor are they trying to take anything away from you. You
will have to learn to live a new lifestyle, and how you do will pretty
much be up to you. The diet is tough, but much less so than it used to
be. I recommend that you follow strickly what you are told to do in the
beginning. After you have been stabalized, and your blood work shows
you are in good control, then approach the dietician about liberalizing
your diet a bit. This entails adding back in occasional small portions
of the foods that you like alot but have given up. Work with the
dietician because she or he can monitor you a little closer. As your
blood work continues to be OK, push for a little more. You will
eventually find a level in your diet that you can tolerate, and maybe
even enjoy, while still being safe. As you might suspect, you generally
have to eat a much more healthy diet on dialysis anyway, but it doesn't
have to so restrictive that you just don't want to eat anymore. Also
remember that different patients will have different diets, as we are
all a little bit different
One more suggestion. If you know for a fact that you are not going to
get transplanted, I would suggest you get a referal to a vascular
surgeon well enough in advance of your projected dialysis dtsrt time so
as to have a permanent access in place and developed before you need it.
The development can take 3-6 months if it is a Fistula, less if it is a
graft. You would do this to avoid using a catheter in the jugular vein.
Catheters are good for emergencies, or when no other access can be
found, but they have much higher rates of failure, they generally give
poorer quality treatments, as well as infection(sepsis) rates. Sepsis
is very serious, even fatal. Use one only if you have to, and for only
as long as you have to.
Now to satisfy the trolls, I am not a doctor. I have 19 years of
experience on dialysis, and I have experienced Peritoneal dialysis,
Hemodialysis and 2 Transplants. While I have not experienced every
possible problem seen in dialysis patients, I have seen most of them up
close and personal. I am a keen observer. I have an Engineering
Degree, and this is the way my brain works. I have also studied the
history of dialysis in length, and keep up with the current thoughts in
the field on a constant basis. I don't claim to know everything, and if
I say something that is not true, I will own up to it when it is pointed
out. This is one way to increase your knowledge, as you will hear
things from time to time that are not true, and the only way you'll know
is if somebody who knows it to be false corrects you.
Please keep up the posts. I know I am a bit wordy, but I would be glad
to help you to learn as much as you feel you need.
Dave
| |
| Paul Bartram 2006-06-29, 2:27 am |
|
"REP" <rep@inanna.com> wrote
> Low-protein diets used to be de rigeur for kidney patients, and it is
> possible to find that advice in older patient-oriented materials, such
> as the book you mentioned, but newer research among professionals in the
> field is making that advice out of date.
Our dialysis ward used to supply various low-protein food and drink (tins
mainly) for free - some kind of sponsorship thing - but I noticed the
cupboard was bare last time I looked. Maybe this is why.
Paul
| |
| Charles Torrisi 2006-06-30, 4:28 pm |
| Dave, thank you so much for that informative post. I like to read as
much as I can to get educated, but it is great to talk to someone who
has been through all this first hand. I definitely have PKD, as shown
by my ultrasound, and by going on a low protein diet, I know I am not
going to cut out proteins completely, but cut down on them. My BUN is
59, which is high, and creatinite is 2.5. If I can keep this at this
level, I will be happy. I am 70 years old, and ,my doctor in Florida
has made the statement that I will never go on dialysis an dgave me a
letter to that effect. The one here in Mass, is a little more skeptical
and I see him in August and has classed me as Stage 3, CKD and. that's
why I really want to get it down and see if this diet works. (Of course
this week I competelyly blew it) Anyway, please keep posting
information. I for one appreciate it. Ange
Have a great day!!
| |
|
| The low protein diet may lower your BUN a small amount, but it won't
touch your creatinine. BUN arises from the digestion and metabolism of
protein, plus the use of your muscles. Creatinine arises completely
from the use of your muscles. The only way you would lower creatinine
would be to sit still all the time, not moving at all. Good luck with
your attempt to stave off dialysis.
Incidentally, you can be in any stage of CKD one day and be in CKF the
next. Because your immune system is compromised, and your blood is
messed up, you are much more susceptable to getting illnesses, viruses
in particular. A good case of the flu can throw you into failure in no
time at all. That is why I said you should at least do the preliminary
work towards going on dialysis, and pray you don't have to. There is
just no definitive way to predict exactly when anything will happen.
And now for the do diligence. I am not a Doctor, and I do not claim to
be a doctor. I have many yeaars of experience with CKF, and have
witnessed closely or experienced first hand most of the problems that
can befall CKF patients. I have also studied CKD in depth, have been
involved with the professionals in an advisory capacity, and talk
extensively with patients all the time. I impart my knowledge in an
attempt to help those that feel they need to know more so as to help
them adjust to the different lifestyle that we all, as CKD patients,
must adjust to. I will readily admit when I am wrong if a viable
argument can be demonstrated. I welcome all questions. If I don't
know, I will make every effort to find out the answer.
Peace be with you,
Dave
| |
| Jason Johnson 2006-07-01, 2:30 am |
| In article <Xns97F2ABADB40ASomebobysomeplacecom@66.150.105.230>, Dave
<Someboby@someplace.com> wrote:
The low protein diet may lower your BUN a small amount, but it won't
touch your creatinine. BUN arises from the digestion and metabolism of
protein, plus the use of your muscles. Creatinine arises completely
from the use of your muscles. The only way you would lower creatinine
would be to sit still all the time, not moving at all. Good luck with
your attempt to stave off dialysis.
Incidentally, you can be in any stage of CKD one day and be in CKF the
next. Because your immune system is compromised, and your blood is
messed up, you are much more susceptable to getting illnesses, viruses
in particular. A good case of the flu can throw you into failure in no
time at all. That is why I said you should at least do the preliminary
work towards going on dialysis, and pray you don't have to. There is
just no definitive way to predict exactly when anything will happen.
And now for the do diligence. I am not a Doctor, and I do not claim to
be a doctor. I have many yeaars of experience with CKF, and have
witnessed closely or experienced first hand most of the problems that
can befall CKF patients. I have also studied CKD in depth, have been
involved with the professionals in an advisory capacity, and talk
extensively with patients all the time. I impart my knowledge in an
attempt to help those that feel they need to know more so as to help
them adjust to the different lifestyle that we all, as CKD patients,
must adjust to. I will readily admit when I am wrong if a viable
argument can be demonstrated. I welcome all questions. If I don't
know, I will make every effort to find out the answer.
Peace be with you,
Dave
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dave,
Thanks for your excellent post. I do not have kidney disease at this point
in time and am trying to do everything I can do to keep from getting
kidney disease. I have read "Coping With Kidney Disease" by Mackenzie
Walser, M.D. and learned lots of valuable information. I am now on a low
protein diet and it has helped most of items on the blood tests to stay
the same from year to year. My creatinine level was once 1.7 MG/DL but it
went by down to 1.1 after I stopped taking statins. I believe that some
minor damage was done to my kidneys since I have had metabolic problems
since I stopped taking statins. I had kidney disease when I was a baby and
my creatinine level has always been on the high side of normal (1.1 to
1.3.). I do believe that following the low protein diet recommended by Dr.
Walser may prevent me from ever developing CFK--at least I hope so. I
don't believe that starting a low protein diet would help those patients
that have a GFR level of 20 ml per min. or less. I agree that it's
impossible to change the creatinine levels by diet and exercise. I have
changed my diet and exercise almost every day and my creatinine level has
remained the same. The only thing that has ever changed it was statins.
Free free to ask me any questions or to ask about my theory related to how
my kidneys may have been damaged. You may be able to determine if my
theory makes sense. One doctor in another newsgroup said that it would be
impossible to prove my theory since the proper tests (special urine tests)
were not done while I was still taking statins. He is probably correct.
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
|
| In article <Xns97F045FB0B71BSomebobysomeplacecom@66.150.105.230>,
Dave <Someboby@someplace.com> wrote:
> As to the use or non use of low protein diets, what was said is true.
> The current protocol calls for not using low protien diets. It has been
> shown that the only real thing that happens when a patient uses this
> diet is that when they start dialysis, the patient is sicker, usually
> suffering from malnutrition. Any benefit from a slight reduction in
> BUN, such as a small amount less of nausea, are far outweighed by the
> detrimental loss of protein in the muscles. This can be followed by
> measuring Serum Albumen levels, a simple blood test. Albumen levels
> below 3.5 are considered indications of malnutrition. Don't get me
> wrong, until you start dialysis, a slight decrease in protein intake
> would not be bad, just don't go too far.
For nephrotic patients, it's generally recommended that they consume the
usual RDA of protein (which is some g per kg formula I don't recall
off-hand) plus the equivalent of the protein loss.
When I became nephrotic I was bummed as hell - not only because I was
nephrotic, but because I hd only heard the low-protein advice (which has
been around since the 1860s!) and was SO relieved when my nephrologist
hauled out the studies and told me I only needed to limit phosphorous,
potassium and calcium (I have hypercalciuria to an astounding degree; I
don't think most stage 2/3 patients have to limit calcium).
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
| Jason Johnson 2006-07-01, 4:28 pm |
| In article <Lxppg.58208$Lm5.10152@newssvr12.news.prodigy.com>, REP
<rep@inanna.com> wrote:
In article <Xns97F045FB0B71BSomebobysomeplacecom@66.150.105.230>,
Dave <Someboby@someplace.com> wrote:
> As to the use or non use of low protein diets, what was said is true.
> The current protocol calls for not using low protien diets. It has been
> shown that the only real thing that happens when a patient uses this
> diet is that when they start dialysis, the patient is sicker, usually
> suffering from malnutrition. Any benefit from a slight reduction in
> BUN, such as a small amount less of nausea, are far outweighed by the
> detrimental loss of protein in the muscles. This can be followed by
> measuring Serum Albumen levels, a simple blood test. Albumen levels
> below 3.5 are considered indications of malnutrition. Don't get me
> wrong, until you start dialysis, a slight decrease in protein intake
> would not be bad, just don't go too far.
For nephrotic patients, it's generally recommended that they consume the
usual RDA of protein (which is some g per kg formula I don't recall
off-hand) plus the equivalent of the protein loss.
When I became nephrotic I was bummed as hell - not only because I was
nephrotic, but because I hd only heard the low-protein advice (which has
been around since the 1860s!) and was SO relieved when my nephrologist
hauled out the studies and told me I only needed to limit phosphorous,
potassium and calcium (I have hypercalciuria to an astounding degree; I
don't think most stage 2/3 patients have to limit calcium).
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
REP,
It was shocking to me that you had hypercalciuria unless you were taking
high amounts of a calcium supplement. Most kidney patients have low levels
of calcium according to Dr. Walser. He recommends that people that have
kidney problems to take high amounts of a calcium carbonate. Is Dr. Walser
incorrect related to this issue?
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
|
| In article
<jason-0107060750420001@66-52-22-54.lsan.pw-dia.impulse.net>,
jason@nospam.com (Jason Johnson) wrote:
> It was shocking to me that you had hypercalciuria unless you were taking
> high amounts of a calcium supplement. Most kidney patients have low levels
> of calcium according to Dr. Walser. He recommends that people that have
> kidney problems to take high amounts of a calcium carbonate. Is Dr. Walser
> incorrect related to this issue?
Most kidney patients have elevated serum calcium; some have elevated
urinary calcium as well. In general, calcium supplementation is done
with extreme caution in patients with severe kidney disease, but as with
any condition, recommendations are made on a case-by-case basis
according to what the patient needs. I would caution against anyone with
kidney disease adding calcium supplements without their doctor's
knowledge.
Walser was probably not specifically addressing hypercalciuria (very
high levels of calcium in the urine) in his book, which is a very
general guide for laypeople. Calcium reduction is a common treatment
strategy for treating it. Hypercalciuria promotes stone formation.
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
| Jason Johnson 2006-07-01, 4:28 pm |
| In article <Vzwpg.58248$Lm5.37325@newssvr12.news.prodigy.com>, REP
<rep@inanna.com> wrote:
In article
<jason-0107060750420001@66-52-22-54.lsan.pw-dia.impulse.net>,
jason@nospam.com (Jason Johnson) wrote:
> It was shocking to me that you had hypercalciuria unless you were taking
> high amounts of a calcium supplement. Most kidney patients have low levels
> of calcium according to Dr. Walser. He recommends that people that have
> kidney problems to take high amounts of a calcium carbonate. Is Dr. Walser
> incorrect related to this issue?
Most kidney patients have elevated serum calcium; some have elevated
urinary calcium as well. In general, calcium supplementation is done
with extreme caution in patients with severe kidney disease, but as with
any condition, recommendations are made on a case-by-case basis
according to what the patient needs. I would caution against anyone with
kidney disease adding calcium supplements without their doctor's
knowledge.
Walser was probably not specifically addressing hypercalciuria (very
high levels of calcium in the urine) in his book, which is a very
general guide for laypeople. Calcium reduction is a common treatment
strategy for treating it. Hypercalciuria promotes stone formation.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
REP,
I probably should re-read those sections but seem to recall that Dr.
Walser indicated that "some" kidney patients develop various types of bone
disorders such as arthritis, bone pain, etc. Dr. Walser states that due to
low calcium levels in the blood--that calcium is removed from the bones.
This (over time) causes bone related problems. The calcium carbonate
supplements prevent excess amounts of calcium from being removed from the
bones. Elderly people are encouraged to take calcium supplements for this
same reason. As you know, kidneys in elderly people don't work as well as
the kidneys in younger people. My memory is not 100% perfect so feel free
to correct any errors that I made in this post. Have you heard of "renal
osteodystrophy"? Could you explain it.
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
|
| REP <rep@inanna.com> wrote in
news:Vzwpg.58248$Lm5.37325@newssvr12.news.prodigy.com:
> In article
> <jason-0107060750420001@66-52-22-54.lsan.pw-dia.impulse.net>,
> jason@nospam.com (Jason Johnson) wrote:
>
>
> Most kidney patients have elevated serum calcium; some have elevated
> urinary calcium as well. In general, calcium supplementation is done
> with extreme caution in patients with severe kidney disease, but as
> with any condition, recommendations are made on a case-by-case basis
> according to what the patient needs. I would caution against anyone
> with kidney disease adding calcium supplements without their doctor's
> knowledge.
>
> Walser was probably not specifically addressing hypercalciuria (very
> high levels of calcium in the urine) in his book, which is a very
> general guide for laypeople. Calcium reduction is a common treatment
> strategy for treating it. Hypercalciuria promotes stone formation.
>
It can also lead to hardening of the arteries, especially in dialysis
patients, this being related to the elevated Phosphorous levels.
Another consequence of Hypercalcemia can be Brain function changes, such
as confusion and a lack of concentration. Thes types of symptoms are
not only for dialysis patients, they are general symptoms.
Dave
| |
|
| jason@nospam.com (Jason Johnson) wrote in
news:jason-0107061037100001@66-52-22-64.lsan.pw-dia.impulse.net:
> In article <Vzwpg.58248$Lm5.37325@newssvr12.news.prodigy.com>, REP
> <rep@inanna.com> wrote:
>
> In article
> <jason-0107060750420001@66-52-22-54.lsan.pw-dia.impulse.net>,
> jason@nospam.com (Jason Johnson) wrote:
>
>
> Most kidney patients have elevated serum calcium; some have elevated
> urinary calcium as well. In general, calcium supplementation is done
> with extreme caution in patients with severe kidney disease, but as
> with any condition, recommendations are made on a case-by-case basis
> according to what the patient needs. I would caution against anyone
> with kidney disease adding calcium supplements without their doctor's
> knowledge.
>
> Walser was probably not specifically addressing hypercalciuria (very
> high levels of calcium in the urine) in his book, which is a very
> general guide for laypeople. Calcium reduction is a common treatment
> strategy for treating it. Hypercalciuria promotes stone formation.
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
> REP,
> I probably should re-read those sections but seem to recall that Dr.
> Walser indicated that "some" kidney patients develop various types of
> bone disorders such as arthritis, bone pain, etc. Dr. Walser states
> that due to low calcium levels in the blood--that calcium is removed
> from the bones. This (over time) causes bone related problems. The
> calcium carbonate supplements prevent excess amounts of calcium from
> being removed from the bones. Elderly people are encouraged to take
> calcium supplements for this same reason. As you know, kidneys in
> elderly people don't work as well as the kidneys in younger people. My
> memory is not 100% perfect so feel free to correct any errors that I
> made in this post. Have you heard of "renal osteodystrophy"? Could you
> explain it. Jason
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
Jason,
Kidney patients develop an osteoperoesis like loss of calcium for a
slightly different reason than the elderly. The usual dialysis patient
has an elevated Phosphorous level, which triggers the Parathyroid gland
to produce more Parathyroid hormone. This in turn causes a removal of
the calcium in the bone in an attempt to balance out the excess
Phosphorous. Taking supplimentary Calcium will slow this alittle, but
will not stop it. Besides, the reaction product of the elevated
Phosphorous withe the excess calcium will show up in deposits in the
arteries, leadng to hardening of the arteries. This is why it better to
control the Phosphate level rather than to try to counteract it after
the fact. The brittle bones and the hardening of the arteries are the
long term consequences to lack of Phosphorous control, as opposed to the
only true short term consequence of some intense itching. You are right
that some patients are Hypocalcemic and do indeed have to take
suppliments, but I would be very catious about doing this on your own.
The current research is showing that dialysis patients may be better off
to have serum calcium levels that are near the lower end of the normal
serum calcium levels. These studies have not been completed, but tthe
data have been presented. Control of the Phosphorous will do the most
to help prevent the possible problems with your bones.
Thanks,
Dave
| |
| Jason Johnson 2006-07-01, 4:28 pm |
| In article <Xns97F38F36D9B58Somebobysomeplacecom@66.150.105.230>, Dave
<Someboby@someplace.com> wrote:
REP <rep@inanna.com> wrote in
news:Vzwpg.58248$Lm5.37325@newssvr12.news.prodigy.com:
> In article
> <jason-0107060750420001@66-52-22-54.lsan.pw-dia.impulse.net>,
> jason@nospam.com (Jason Johnson) wrote:
>
>
> Most kidney patients have elevated serum calcium; some have elevated
> urinary calcium as well. In general, calcium supplementation is done
> with extreme caution in patients with severe kidney disease, but as
> with any condition, recommendations are made on a case-by-case basis
> according to what the patient needs. I would caution against anyone
> with kidney disease adding calcium supplements without their doctor's
> knowledge.
>
> Walser was probably not specifically addressing hypercalciuria (very
> high levels of calcium in the urine) in his book, which is a very
> general guide for laypeople. Calcium reduction is a common treatment
> strategy for treating it. Hypercalciuria promotes stone formation.
>
It can also lead to hardening of the arteries, especially in dialysis
patients, this being related to the elevated Phosphorous levels.
Another consequence of Hypercalcemia can be Brain function changes, such
as confusion and a lack of concentration. Thes types of symptoms are
not only for dialysis patients, they are general symptoms.
Dave
~~~~~~~~~~~~~~~~~~~~~~~~
Dave,
Thanks for both of your posts. You corrected a misconception that I had
and I appreciate it. I incorrectly believed that elderly people and kidney
patients both needed calcium supplements for the SAME reason.
You explained it very well. I rechecked Dr. Walser's book by finding
"calcium" in the index and re-reading those sections. He explained it the
same way that you explained it but you done a better job.
I do take calcium supplements but it's not a high dose. I would only take
the high doses recommended by Dr. Walser if my calcium level (as per blood
tests) indicated that I had hypocalciuria. I dont' presently have elevated
Phosphorous levels--probably because I take a TUMS after almost every meal
since it's a phosphorous binder. I have metabolic problems so check my
urine (when I am home) with urine pH strips. I know all of the secrets on
how to keep the acid levels under control. Before I learned those secrets,
I was vomiting two or three times a week--due to the high amounts of acid.
I have only vomited one time in the past two years since I changed to a
vegetarian diet--I only eat Meat (fish) once a week. I use the Essential
Amino Acid (cherry drink) recommended by Dr. Walser.
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
| Charles Torrisi 2006-07-02, 8:26 am |
| After reading all these posts, I feel that I understand alot more about
phosphates and phosphorus and am trying to cutdown or watch my intake.
My doctor prescribes two bicarbonate pills a day, which I kind of didn't
pay toomuch attention to, but after this, I am taking them. Do you
think I should also take tums after every meal. I was prescribed
Fosamax by one of my nephrologist, (which I don't go to anymore) and my
new doctors cut me down from 70 ml to 35. I see the ads on tv that
people with kidney disease should not take these,, so now I am
thoroughly confused on how muchgood they are doing me.
Dave, I read your post of how to lower creatinine, and you said it came
from muscle use and if I don't move, it may go down. However, I try to
take a good walk everyday and with everyday chores and things to do,
that is not going to work for me. I can see that I have to have a long
talk with my doctor when Igo see him in August,about my condition, and
how to prolong dialysis, that is, if I can.
By the way, we went to visit my son at thdialysis center last night, and
I notice that along with his blood being circulated, there was also a
jugof bicarbonate also being added. Also, as you said, they have
increased his protein intake. Although I worry that he is not eating
enough, I see that they are keeping him at a dry weight goal everytime
he goes in and pull out a liter or so of fluid. He seems tohave a good
handle on it and is encouraged by how much better he feels. There is so
much to this and is mind boggling.
..
Anyway, I did stop the fosamax, should I replace with tums? As far as
the phosphates go, I have one glass of skim milk with my cereal in the
am, and no sodas or if I do, light ones only. As much as I try to read
up on things, between th internet, books, and advice, and try to get
educated as much as I can,I'm more sure what I am doing is going to
help me if my kidneys are growing cysts and losing their function
anyway. Maybe it is a losing battle for me.
There is a new drug being tested out there that is called tolpaltvin,
and that is supposed to stop cysts from forming in the kidneys. That
may be something in time for my daughter to take. Now her nephrologist
tells her she can eat anything she wants. Take about being confused.
Anyway, thanks for the posts, and keep them coming. Ange
Have a great day!!
| |
| Jason Johnson 2006-07-02, 4:28 pm |
| In article <26893-44A7B26D-393@storefull-3314.bay.webtv.net>,
CTORRISI56@webtv.net (Charles Torrisi) wrote:
After reading all these posts, I feel that I understand alot more about
phosphates and phosphorus and am trying to cutdown or watch my intake.
My doctor prescribes two bicarbonate pills a day, which I kind of didn't
pay toomuch attention to, but after this, I am taking them. Do you
think I should also take tums after every meal. I was prescribed
Fosamax by one of my nephrologist, (which I don't go to anymore) and my
new doctors cut me down from 70 ml to 35. I see the ads on tv that
people with kidney disease should not take these,, so now I am
thoroughly confused on how muchgood they are doing me.
Dave, I read your post of how to lower creatinine, and you said it came
from muscle use and if I don't move, it may go down. However, I try to
take a good walk everyday and with everyday chores and things to do,
that is not going to work for me. I can see that I have to have a long
talk with my doctor when Igo see him in August,about my condition, and
how to prolong dialysis, that is, if I can.
By the way, we went to visit my son at thdialysis center last night, and
I notice that along with his blood being circulated, there was also a
jugof bicarbonate also being added. Also, as you said, they have
increased his protein intake. Although I worry that he is not eating
enough, I see that they are keeping him at a dry weight goal everytime
he goes in and pull out a liter or so of fluid. He seems tohave a good
handle on it and is encouraged by how much better he feels. There is so
much to this and is mind boggling.
| |
| Larry Krzewinski 2006-07-02, 9:32 pm |
| On Sun, 02 Jul 2006 10:56:23 -0700, jason@nospam.com (Jason Johnson)
wrote:
>I seem to recall
>reading in Dr. Walser's book that they have prescription medications that
>do an even better job than TUMS in regard to binding phophorus and
>removing it from your body.
It is called Phoslo and is available by prescription only.
| |
|
| In article <Xns97F38F36D9B58Somebobysomeplacecom@66.150.105.230>,
Dave <Someboby@someplace.com> wrote:
> REP <rep@inanna.com> wrote in
> news:Vzwpg.58248$Lm5.37325@newssvr12.news.prodigy.com:
>
>
>
> It can also lead to hardening of the arteries, especially in dialysis
> patients, this being related to the elevated Phosphorous levels.
> Another consequence of Hypercalcemia can be Brain function changes, such
> as confusion and a lack of concentration. Thes types of symptoms are
> not only for dialysis patients, they are general symptoms.
I was addressing hypecalciURIA, not hypercalEMIA. I am very slightly
hypercalEMIC (.1 out of range - no biggie) but my hypercalciURIA - and
forming/passing CaOx/apatite stones every 30-45 days is why *I'm* on a
calcium restriction. The exact mechanism of my hypercalciuria isn't
known - it isn't a feature of FSGS or stage 2/3 failure or even heavy
proteinuria - and while it may be linked to my kidney diseases (I have
more than one, per biopsy), it's believed to be idiopathic since I've
been a consecutive stone former for nearly 20 years. I'm female, too - a
real rara avis for having FSGS and being a consecutive stone former!
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
|
| Ange,
From what I know, the danger with fosomax in dialysis patients has to do
with the already messed up bone metabolism. It is used sometimes in
transplant patient effectively, as they face the similar problem with
the bones from the use of Prednisone, a steroid.
As far as lowering the creatine, I must apologise a little. I was
actually being facetious. The only person who could likely pull that
off would be a coma patient. Sorry. You are better off anyway to try
and maintain as physically fit a body as you can. The better your
overall condition, the better you will recover from the inevitable
problems that will arise.
It sounds like your son attends dialysis at a Gambro/Davita unit. Other
company's units mix the bicarbonate into deionized water in a tank and
then pump it to the machine to be mixed with the acetate at the last
minute. G/D attach a container with bicarbonate to the machine and
administer it to the dialysis fluid on the fly so to speak. Both
methods work well, they are just proprietory. The one advantage of the
G/D method is they don't have a solution line for the bicarbonate that
needs to be periodically flushed out. One of the chemical properties of
bicarbonate is that it does not stay in solution well. The particles
tend to precipitate out and coat the inside of the lines.
Don't start taking tums without asking your doctor first, and I mean the
nephrologist. As much as I know that they are very intelligent, most
GP's and Internal Medicine Specialists really don't keep up well enough
with what is current for ESRD, such as what medications can and can't be
given to transplant patients. Keep a regular physician for routine
illness, but develop a good relationship with your nephrologist, and
always run anything another doctor tells you by him.
I have heard of this drug, and it does indeed look promising. I think
your daughters doctor is the best source for how she should be treated.
He will have the latest info. As you have probably picked up on, the
treatment of ESRD has completely changed over the last 40-50 years, and
it will continue to change as more and more is understood about how the
different contributing factors to ESRD work. This is why I said that
ESRD is a continuing learning experience, just like being a professional
such as a doctor, a nurse or an engineer. It also might not be a bad
idea if your daughter took the time now to start learning as much as she
can about her condition(PKD). Better to have the knowledge in case she
needs it later. Also, demistifying her condition may relieve some of
the stress that she is undoubtedly experiencing. Even if she is not
expressing it, just about everybody facing ESRD does experience it.
Now for my tangent for the day. I have noticed that several of the
people in this group have begun to have a turnaround in their attitude
towards what is going on. This is a good thing. You will be very
surprised at how having a good attitude will mean all the difference in
keeping you feeling better physically. If you have the attitude that
this the worst thing in the world and you can't possibly feel well
again, you won't, it is a self fullfilling prophecy. If you approach
the little ups and downs that come with CKF like it is just another
small hurdle to get over, most of time it will turn out that way. Your
mind is a very powerful tool that can be used to control your body, so
use it. If it requires that you get some help to get to a point where
you can turn your attitude around, by all means pursue it. Don't worry
about what others may think, you should do what you have to.
As usual, I am not a doctor, just have vast experience.
Dave
| |
|
| Larry Krzewinski <Feerless_Freep@madmagazine.com> wrote in
news:5daga29vdimmt5j9lh342ca7bsnmjdl15q@4ax.com:
> On Sun, 02 Jul 2006 10:56:23 -0700, jason@nospam.com (Jason Johnson)
> wrote:
>
that[vbcol=seagreen]
>
> It is called Phoslo and is available by prescription only.
>
There is also Renagel and there is another one that was recently
approved by FDA. I don't recall the name. Both are far superior to
Phoslo or Tums, if the patient can tolerate them..Renagel sometimes
causes loose bowel problems in diabetics. The new drug is designed to
be as effective as Renagel without this side effect. Both of these are
Prescription drugs.
Dave
| |
|
| REP <rep@inanna.com> wrote in
news:YJ5qg.126360$dW3.72374@newssvr21.news.prodigy.com:
> In article <Xns97F38F36D9B58Somebobysomeplacecom@66.150.105.230>,
> Dave <Someboby@someplace.com> wrote:
>
>
> I was addressing hypecalciURIA, not hypercalEMIA. I am very slightly
> hypercalEMIC (.1 out of range - no biggie) but my hypercalciURIA - and
> forming/passing CaOx/apatite stones every 30-45 days is why *I'm* on a
> calcium restriction. The exact mechanism of my hypercalciuria isn't
> known - it isn't a feature of FSGS or stage 2/3 failure or even heavy
> proteinuria - and while it may be linked to my kidney diseases (I have
> more than one, per biopsy), it's believed to be idiopathic since I've
> been a consecutive stone former for nearly 20 years. I'm female, too -
> a real rara avis for having FSGS and being a consecutive stone former!
>
I apologise. I didn't notice that you said hypercalciuria, or excessive
passing of calcium with CaOX stone formation, rather than hypercalcemia,
which is elevated serum calcium. As I have said, every set of problems
can have a totally different treatment regimen. Good Luck
Dave
| |
| Jason Johnson 2006-07-03, 4:25 pm |
| In article <Xns97F57489DDA9DSomebobysomeplacecom@66.150.105.230>, Dave
<Someboby@someplace.com> wrote:
REP <rep@inanna.com> wrote in
news:YJ5qg.126360$dW3.72374@newssvr21.news.prodigy.com:
> In article <Xns97F38F36D9B58Somebobysomeplacecom@66.150.105.230>,
> Dave <Someboby@someplace.com> wrote:
>
>
> I was addressing hypecalciURIA, not hypercalEMIA. I am very slightly
> hypercalEMIC (.1 out of range - no biggie) but my hypercalciURIA - and
> forming/passing CaOx/apatite stones every 30-45 days is why *I'm* on a
> calcium restriction. The exact mechanism of my hypercalciuria isn't
> known - it isn't a feature of FSGS or stage 2/3 failure or even heavy
> proteinuria - and while it may be linked to my kidney diseases (I have
> more than one, per biopsy), it's believed to be idiopathic since I've
> been a consecutive stone former for nearly 20 years. I'm female, too -
> a real rara avis for having FSGS and being a consecutive stone former!
>
I apologise. I didn't notice that you said hypercalciuria, or excessive
passing of calcium with CaOX stone formation, rather than hypercalcemia,
which is elevated serum calcium. As I have said, every set of problems
can have a totally different treatment regimen. Good Luck
Dave
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I also apologize for those same reasons. I should have checked my
"dictionary of medical terms". Sorry.
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
| Charles Torrisi 2006-07-04, 4:26 pm |
| Dave, thank you for your knowledgeble information. I read all the
posts and hope that everyone will get something out of other people have
to offer.
Polycystic kidneys run in my family, with my father being the carrier
that I know of, and dying at 59, because his kidneys failed. However,
my sister never got the disease nor did her family and me being the
youngest, I was the target. I have been under the care of a
nephrologist for a few years now, have my blood pressure under control,
and like i said, my doctor in Florida is very optimistic about this
where I am 70 now and doesn't think I will ever go on dialysis. I see
the doctor here in Mass. next month. I try to keep my blood pressure
down, cut down on meats and beef in general, but that creatinie figure
frightens me.
Now my daughters nephrologist in Tampa, tells her she can eat whatever
she wants. She hasn't developed high blood pressure, wheras my son
developed high blood pressure when he was young. I wonder if her doctor
tells her that because with this kind of kidney disease, there is no
stopping the growth of these cysts? I don't know.
My doctor in Florida just added bicarbonate to my diet regimen, and I
wonder what made him do that. I was so overwrought that day, because I
had just visited the dialysis center down there, when I found my son was
going to start it soon after that, I forgot what my name was, if you
know what I mean.
Anyway, I intend to go over each blood test in the high range with my
doctor step by step to see what I can do to get them in range, by diet,
or meds or whatever it takes. I see my son is doing so well on
dialysis, and he is feeling so much better since he has beenon it, that
I am encouraged, but don't want to get to that point if I can help it at
since I'm alot older.than he is.. In the meantime, I am walking, riding
and working part time if you believe that, , and trying to keep in good
shape as best I can. They want me to come back next year, and I told
them if this keeps up, I'll be needing a walker.
Again thank you for all your information, and thank you for taking the
time to answer it. Tell me about what you have gone through to be so
knowledgeable and educated about your condition. Ange
Have a great day!!
|
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