 Re: Question for REP
In article <Xns97F38E3BECB7BSomebobysomeplacecom@66.150.105.230>, Dave
<Someboby@someplace.com> wrote:
Jason,
As a demonstration of how behind the times beaurocracies in the US have
gotten, I submit to you this. Up until the early 90's, the very low
protein diet that was customary for PreESRD patients, used to try and
extend kidney function life, was also continued as the diet of choice
for dialysis patients as well. In the early 90's, several studies were
done that indicated that the use of this diet by dialysis patients was a
significant indicator for premature death in the dialysis patient
population, related to the consistant state of malnutrition. Dialysis
units in the US consequently changed the diet retrictions on the
dialysis renal diet to include much larger potions of protien, with the
result being that the mortality rate for patients, caused by diet
related causes, fell dramatically.
The problem came in at this point. Hospitals continued to prescribe the
traditional renal diet of low protein to dialysis patients when they
were admitted. This led to cases of patients that spent any time at all
in the hospital being released in a malnourished state. The net effect
of this is that it extends recovery times, and in some patients, causes
a failure to recover.
Now you would think that eventually the news would get around to the
hospital staff that he renal diet for Pre-ESRD and for CKF have evolved
in different direections, but even today, in the mid-2000's, most
doctors and dieticians in the hospital setting still automatically put
dialysis patients on a low protein diet upon admission. Only if a
patient expresses concern, and sometimes only if the patient's
Nephrologist intervenes, is the diet liberalized.
For me, this is one reason why I say that the patient has to know as
much as possible about himself physically and about his treatment
regimen. Don't relie on Doctors, Nurses or government pronouncements to
dictate to you how you need to be treated, as their knwledge does not
always reflect the most current knowledge. Study your illness. Keep up
to breast on what is happening, Besides just having a greater knowledge
of current protocols, you will feel empowered, more in control of your
treatment, as well as your life. This will help to make you healthier
and happier, thereby giving yourself a chance for an extensive, active
life.
Ther have ben loads of times where it is evident that the government
lags behind the rest of society when it comes to dialysis treatment.
Private dialysis units began using a mixture of Acetate(Acetic Acid) and
Bicarbonate in the mid-1980's. This was as opposed to just the Acetate.
This was done for better outcomes with the patients. Using just the
Acetate, patients would feel like they had been run over by a truck at
the end of treatment. They were mostly barely functional between
treatments, and lifespan on dialysis was approximately 2-3 years on
average. The main probelm here was that the Acetate was drawing the
patients blod level of Bicarbonate down to a critical level, causing the
patient to go into acidoesis, or a lower than normal blood PH. This is
dangerous. Bicarbonate in the blood acts as a buffer, keeping the PH in
the blood at a steady state so that the boby's cells can function
optimumly. A small change in PH, about 0.2 in either direction, can
seriously affect the function of the cells of the body, and longterm
exposure will lead to cell death and eventually patient death.
After the introduction of Bicarbonate to the dialysate fluid, coupled
with the better technologies that have appeared since then and the vast
improvements in the knowledge of the diet, the average lifespan of a
dialysis patient has been steadily increasing. Currently, this figure
has risen to more than 12 years, and I thoroughly expect it to rise even
further, with the advancement of the treatment of all the side issues
related to being on dialysis, mainly the co-morbid conditions such as
diabetes and cardiac issues.
So don't just take it with a grain of salt that if a government agency
says it is so that it must be so. Do a little research, ask some
questions. Your doctor will gladly discuss these issues with you. If
he or she won't, get another. It is in the doctor's interest to have a
well informed patient as well as in your interest. I know some people
will say they don't have time to do all this research, but I submit that
being constantly up to date as to what is happening in your ilnness
field is part of your personal responsibility to yourself anyway. In
this way, you will be aware of the changes that are being proposed
before they occur, and be ready when they come. Keep track of
Pharmaceutical com[pany research into drugs that may benefit dialysis
patients. Keep track of ongoing studies that may lead to fundamental
changes in the treatment of CKD. Learn to spot the current fad in diet
for what they are, fads. Learn to distinguish whether it is wise for a
dialysis patient to experiment with these fads(most of the time NOT). I
should note here that this includes diet suppliments. You should not
ever take any dietary suppliment without the express permission of the
dialysis team. Because of the way they are treated by the government,
dietary suppliments, or so called natural remedies, do not have to prove
to anybody that they work, do not have to disclose what ingredients are
used to make them and do not have to disclose quatities of these
ingredients. Different batches of the same substance have been shown to
have completely different levels of the different ingredients. For this
reason, you really do not know what you are taking, and with a dialysis
patient's restrictions on certain substances in the diet, you can't
really afford to experiment like that. I could cause you to die. Even
if a substance wouldn't harm a physically normal person, dialysis
patients have different dietary needs. Most doctors are aware of the
various substances available and will have some knowledge of them. Talk
to them and then follow what they say. If they don't know whether it is
safe for you to take, they will find out for you
Here is an analogy to help to explain this. You haere it all the time
that the average person needs to eat a healthy diet that includes a good
dose of Potassium. Well if a dialysis patient were to follow this
advise, hhe would likely be dead within a week from heart complications
related to elevated blood Potassium levels. The kidney is the primary
regulator of the body's Potassium level. While a cetain level is
necessary for the function of the nervous system and the maintenance of
the heart beat, too much will put the heart rate into overdrive and
eventually lead to heart failure. The heart will just stop beating and
the patient wil die. This is why I feel that the control of the
Potassium in a dialysis patient's diet is the most important part of the
dietary controls needed to survive. Most people think that the fluid is
the most important, but most patints can tolerate much more fluid before
it becomes life threatening than they can handle an elevated Potassium
level. As always, remeber that different patients will tolerate
different levels of Potassium. This will depend on the overall conition
of the patient, especially the condition of the heart.
I want to opologize to everybody about he way I tend to go off subject
from my original point from time to time. These tangents just seem to
me to be related and therefore important. A little extra knowledge
never hurts anyway.
As usual, I don't claim to be a doctor, and I am not a doctor.
thanks
Dave
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Dave,
Thanks for your post. I learned some things that I did not know.
Jason
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