| Subject: Re: PKD |
Author:
Lorelle
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Date Posted: 07:45:26 05/18/06 Thu
In reply to:
Anubha
's message, "PKD" on 09:17:30 05/16/06 Tue
There is no cure, but there are many things which can be done which may prolong the life of the kidneys, and improve the quality of life.
First thing is find a Nephrologist who treats many PKD patients.
Learn how to interpret blood work/labs.
Research chronic kidney disease (CKD) diet.
Read previous posts on this forum.
Look for other forums on yahoo, check out pkdcure.org and search for a support group in your area.
My experience has been that if you wait for the medical professionals to educate you, you will remain ignorant of information you need to know.
Also, keep in mind that when kidneys fail dialysis is far better than it used be. In fact some patients are not even considering transplant and anti-rejection drugs, because dialysis is so much better than it used to be. Home dialysis is quite common and frequently gives people a high quality of life and enables them to continue to work. The small portable NxStage machine enables travel and is very easy to use.
In many cases, with good care, PKD need not be much more than a minor inconvenience. Every PKD patient should expect and demand good care and expect their medical team to treat them w/ respect. Unfortunately this is not happening in many cases, so educate yourself and be prepared to do battle armed w/ facts and information. Be prepared to educate everyone around you, including many medical professionals who should know more that you do, but often don't.
PKD rarely progresses at a rapid rate, so stop, take a deep breath, and then get started.
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