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"I'm not a health care professional.  These SUGGESTIONS for the care and
feeding of ailing kidneys are based on ADVICE I have been given over the
years and mistakes I have made."  Melissa
Our member Melissa was kind enough to share her personal experiences with us. She has been a vital part of this sites growth and education. And also a great source of strength and hope for myself and hundreds of others here as well. God bless you Melissa ...always. 


PKD 101   

1) Keep your blood pressure under control.  If medication is necessary, an
ACE inhibitor is preferable, because it works on the mechanism which is
causing the hypertension, but anything that works is good.

2) Drink 1.5-2 quarts of water a day.  Caffeinated or alcoholic beverages
don't count.
Your urine should be pale and dilute.

3) Keep your blood pressure under control.  Can't say this too many times.

4) Adopt a low-protein diet of no more than 1 gm/kg body weight.  (about 70
gms for a 150lb person.)  You must count **all** protein, not just that in
meat products.  Keeping to .75gm/kg (the RDA) is better.  There is some
evidence that plant protein, especially soy products, are easier on the
kidneys than animal proteins.  If started early enough, a low-protein diet
may significantly delay the onset of kidney failure.  Even if you are very
near kidney failure, a low-protein diet will lower your BUN and lessen the
symptoms of uremia.

5) Keep your cholesterol under control.  If you adopt the low-protein diet,
the cholesterol should come down also.

6) Avoid ibuprofen (Advil, etc.).  Read the tiny print on all OTC medicines
and follow their instructions.  Tylenol is probably the safest OTC pain
reliever to take, but don't chow down on the Tylenol either--it's damaging to
the liver.

7) Void when you feel the need.  Don't hold your urine--it encourages
infections.  Get treatment for infections promptly.
8) Since kidney disease can cause bones to deteriorate, get a baseline bone
density scan and, if necessary, take steps to preserve bone mass, including
weight-bearing exercise and calcium.  Don't take calcium supplements, though,
without checking with your doctor, because too much calcium can also be a
problem.   Osteopenia from kidney disease is usually develops when the kidney
is no longer able to convert dietary or sunshine vitamin D into a form which
can be used by the body.  If your parathyroid hormone levels go up, you may
need to switch to a prescription form of vitamin D.

9) Since teeth are set in bone and are affected by the condition of your
bones, be religious about flossing and brushing.

10) Don't smoke.

11) Ask your nephrologist which arm is most likely to be used for dialysis,
if you ever have to have it (probably your non-dominant arm), and don't let
people draw blood or put IVs in it, if you can possibly avoid it.

12) As your kidneys deteriorate, check with your nephrologist before letting
any other doctor or dentist give you medications.  Medications which you took
when your kidneys were healthier may cause problems for failing kidneys.

13) Be careful about using herbal medicines.  Many herbs which are described
as "good for the kidneys" are diuretics, which only increase urine flow. 
Used under a doctor's supervision, diuretics can be helpful in controlling
blood pressure and edema, but they can also be dehydrating, which is harmful
to the kidneys.

14) Kidney disease comes on so slowly you may not notice that you have less
energy than you used to.  If you drop activities, be sure they are the
activities you don't really want to do anyway.  Be careful that your work
stays up to standard.  You can't be fired for having kidney disease, but you
can be fired for not doing your job.

15) Don't believe anything you see in the popular media about kidney failure,
dialysis, or transplant.  It is probably wrong and will only make you worry

16) Give to the National Kidney Foundation or the foundation for your
particular form of the disease, so that better treatments or a cure can be
found before you need them.

17) Remember that your goal is to keep yourself as healthy as possible.  The
time may come when the best way to preserve your health is to use dialysis to
remove the toxins your kidneys can no longer handle.  If you have been
following these recommendations, particularly the low-protein diet, and
getting treatment for anemia, you may not feel seriously sick.  But when your
doctor tells you go prepare for dialysis, cooperate anyway.

Although, in general, when one function of the kidney deteriorates, they all
deteriorate, but in any single individual, the different functions may
deteriorate at different rates.  (I have heard that PKDers as a group have
less trouble with anemia than people with other forms of kidney disease, but
you'd never prove it by me)   People in the early stages of the disease are
sometimes told, "you don't have to worry about that yet; your creatinine is
only x.0"  Well, my creatinine was holding at 3.0 for a long time while my
bones were disappearing, so I recommend vigilance for people at all stages of
the disease. 

Since many kidney functions are affected by diet, the kind of dietary
modifications one follows depends on the particular manifestation of the
kidney disease in his or her body.  And you have to remember that diet can do
only so much.  Medications will be necessary to maintain some functions. 
Also remember that the object is to keep oneself as healthy as possible, not
to delay dialysis as long as possible.  It is possible to use diet to
suppress the symptoms of kidney disease without stopping the deterioration of
the kidney.  But eventually, for half the people with PKD. the best way to
stay healthy is to use dialysis to remove the fluids and toxins the kidney is
no longer able to handle. 

I know that the kidney performs the following functions in the body.  There
could be more.

1) Removes waste products of metabolism from the body.
2) Regulates the levels of electrolytes (sodium, potassium, chloride) in the
3) Regulates the level of fluids in the body and removes excess fluid.
4) Regulates blood pressure through the release of renin.
5) Converts dietary and sunshine vitamin D into a form usable by the body. 
Activated vitamin D is essential to maintaining calcium in the bone.
6) Maintains a balance between calcium and phosphorus, which is also
necessary to bone health.
7) Secretes erithropoetin, which is necessary for the production of red blood

Many of these can be affected by diet:

1) Removes the waste products of metabolism from the body.  The usual
measures of the ability to remove waste products are creatinine clearance and
BUN (blood urea nitrogen).  Creatinine is a waste product of muscle
metabolism and provides a straight-forward measure of how well the kidneys
are filtering out toxins.  It is, in general, not affected by diet, although
if someone is so malnourished that he or she is losing muscle mass, the
creatinine may go down.

BUN, which measures the ability of the body to remove the waste products of
protein metabolism, is affected by diet--if one eats less protein, one will
generate fewer waste products.  Some doctors therefore recommend a
low-protein diet to people hoping to delay the onset of kidney failure,
although others think that the supposed benefit is so small it does not
warrant a major lifestyle change.  (Whether this is indeed true is a personal
decision.  Some people would literally rather go on dialysis than give up
their Big Macs; I gave up Big Macs long before I knew it could make a
difference to my kidneys.)   Some PKD researchers think it may have benefits
if started before the kidneys are severely compromised, when the creatinine
is still less than 1.5. 


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