| Subject: Re: PKD Conference in Washington, DC |
Author:
Rochelle
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Date Posted: 07:29:18 09/17/06 Sun
In reply to:
Diane (Update from Sunday)
's message, "Re: PKD Conference in Washington, DC" on 16:36:20 06/26/06 Mon
>Okay. On the third day of the conference, I went to 2
>sessions. One on TRANSPLANTATION, and the other which
>was a general Q&A.
>
>A. The transplant talk was very extensive and covered
>not only what happens during the transplant, but who's
>involved, what it means to be a donor, what kinds of
>meds you are put on, what the follow up is like, etc.
>It was extremely informative. Some of the most
>interesting things I heard was that they are
>strategizing in all sorts of ways to make the donor
>pool larger. For example, if you have a relative who
>wants to donate a kidney, but you are not matched, you
>both can be part of what's called a "Paired Kidney
>Exchange" with another couple in similar
>circumstances. For more info, you can contact a group
>called NEPKE (www.nepke.org). Another thing your
>relative can do if they are not compatible with you is
>donate generally to the deceased donor waiting list.
>If they do that, you can get bumped up to the top of
>the regional waiting list and receive the next
>acceptable kidney.For info and statistics on every
>transplant center in the country, check out:
>www.unos.org.
>
>B. During the Q&A, there were a lot of interesting
>questions; I was most interested in the nutrition
>ones. One thing I didn't know is how much SUGAR is a
>factor in controlling UTI's. People drink sweetened
>cranberry juice, but that Ocean Spray stuff has about
>the same amount of sugar as it has nutritional
>benefit. The nutritionist said that unless your
>cranberry juice tastes sour, you shouldn't be drinking
>it for nutrition. There was more talk about
>alternative therapies. We were told to be very
>cautious and to avoid those online "miracle herbal
>cures." Anything that you ingest can harm the kidney.
>The doctors on the panel were more in favor of touch
>therapies. They recommended a great website that
>reviews various alternative therapies,
>www.kidneyschool.org
>
>And that's it! I guess I'd like to leave you with one
>story from the conference. My wonderful husband and I
>walked into the luncheon and sat down at an empty
>table. Soon, two representatives from a genetic
>mapping company came and sat down with us. They were
>very polished and professional, very "business like."
>We were in our PKD T-shirts and feeling pretty drained
>from the sessions. They started talking about their
>business and what they do and how they can help us,
>and I started feeling very embarassed. I didn't think
>I was using the right fork for my salad. I didn't
>think I was making clever enough small talk. Mind you,
>these guys didn't ask even one question about our
>situation. But I was feeling self conscious. Well, at
>the end of the luncheon, the PKD conference asked for
>the doctors to stand for a round of applause. They
>were there from Harvard, Tufts, Johns Hopkins, the
>Mayo Clinic...from Ireland, Toronto, Italy,
>Korea...and I started to cry. These doctors were
>working for me, my husband, my late father, my family
>to be, and all these people in the room and around the
>country with PKD. They were ALL working for one cause:
>a cure for what we have. Why was I feeling self
>conscious? All these people cared about ME. And they
>care about you. You are not alone. God bless you on
>your journey.
Diane, how wonderful it was for you to share all your experiences at the PKD Conference with all of us! My husband has PKD, is in End Stage at this time.
He and I have attended 4 PKD conferences, and you are right. They are very, very good. We started attending around 10+ years ago, when they were not organized as well as they are now. Dan Larson and his staff have developed a very informative conference.
My mother-in-law had PKD, and unfortunately 5 of her 10 children have inherited it. What we have learned is, most definitely, everyone is different. And, there ARE VARYING DEGREES OF SEVERITY OF PKD!
Thank you, again, for sharing your experiences, and God Bless You!
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