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Cheeks24
Living a dream
Member since 1/08 8589 total posts
Name:
Cheeks
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Does anyone know if there is a national kidney waiting list online?
I googled around for it and couldn't find it. My mom was recently placed on the list and wanted to see what number she is.  She never asked the hospital when they told her she was placed on the list.
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Posted 10/26/10 12:39 PM  |
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rojerono
Happiest.
Member since 8/06 13803 total posts
Name:
Jeannie
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Re: Does anyone know if there is a national kidney waiting list online?
I don't know that they'd actually have that kind of information on line.. it seems that it would violate HIPPA in every way imaginable.
I'm sorry for your mom - I think she can ask her doctor for the information she seeks though.
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| Posted 10/26/10 12:56 PM |
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Cheeks24
Living a dream
Member since 1/08 8589 total posts
Name:
Cheeks
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Re: Does anyone know if there is a national kidney waiting list online?
Posted by rojerono
I don't know that they'd actually have that kind of information on line.. it seems that it would violate HIPPA in every way imaginable.
I'm sorry for your mom - I think she can ask her doctor for the information she seeks though.
I didn't even think about HIPPA. Thank you.
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| Posted 10/26/10 1:01 PM |
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sj-girl
Happy Family of 4
Member since 5/08 5654 total posts
Name:
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Re: Does anyone know if there is a national kidney waiting list online?
Mici, I am sorry. I had no idea
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| Posted 10/26/10 1:51 PM |
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Cheeks24
Living a dream
Member since 1/08 8589 total posts
Name:
Cheeks
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Re: Does anyone know if there is a national kidney waiting list online?
Posted by SJ-GIRL
Mici, I am sorry. I had no idea
Well it's actually a good thing because she's been so good with her dialysis. 
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| Posted 10/26/10 2:17 PM |
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MeNBobs
*****
Member since 4/07 3765 total posts
Name:
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Re: Does anyone know if there is a national kidney waiting list online?
Posted by Mici C
Posted by SJ-GIRL
Mici, I am sorry. I had no idea
Well it's actually a good thing because she's been so good with her dialysis.
I didn't know either. I am praying for continued success 
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| Posted 10/26/10 2:23 PM |
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Pray4Baby2010
<3 Cutest Giants Fan
Member since 10/09 5796 total posts
Name:
MB
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Re: Does anyone know if there is a national kidney waiting list online?
 lots of prayers and hugs for you and your mom Mich! My dad's best friend had a kidney transplant about 4 years ago and he is doing fabulous!
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| Posted 10/26/10 2:32 PM |
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Ayne11
Yep
Member since 1/09 18021 total posts
Name:
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Re: Does anyone know if there is a national kidney waiting list online?
Sorry to hear Mici! But, glad to hear she's doing well on her dialysis
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| Posted 10/26/10 2:39 PM |
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IVFGIRL
LIF Infant
Member since 1/09 139 total posts
Name:
Eva
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Re: Does anyone know if there is a national kidney waiting list online?
My mother had a kidney transplant and she was told average was about 2 yr wait, luckily she had a rarer blodd type and a donor became available in about 6months. It depends on how sick she is and what her type is, location, there are many different factors, not just a hard number.
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| Posted 10/26/10 3:08 PM |
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springsandra
Baby girl has a baby brother!
Member since 11/09 7155 total posts
Name:
Sandra
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Re: Does anyone know if there is a national kidney waiting list online?
It varies from state to state and county to county.
Where my Aunt lives in FL, it's a 2-year wait, but one county over it's only a 6-month wait, average.
My other aunt donated a kidney to my mom (PKD runs in our family which is why all the kidneys needed... stupid disease) but otherwise she was told it was about a 5 year wait where she lived in NY, but that was several years ago. She wasn't that eager to be on the list. It was like she "enjoyed" dialysis or something. 
Wishing your mom the best! Kidney failure is really scary, but post-Op, my mom is doing amazing as far as being able to live her life again. Before she was tied to those machines 3 days a week for 4 hours at a time. Now she's been in the hospital 5 times since the transplant last August, but it's mostly because when they find infections she needs to go on IV antibiotics. The kidney itself is perfectly healthy!
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| Posted 10/26/10 3:13 PM |
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Nayia
<3 <3 <3
Member since 10/07 1824 total posts
Name:
Penny
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Re: Does anyone know if there is a national kidney waiting list online?
I'm sorry to hear about your mother, kidney failure is such a hard thing to deal.
2 years ago I went through this all with my dad. he was on a list in Ny and the waiting time was about 2 years but he is a very common blood type so it could have been sooner or even later.
He was also on a list in Pittsburgh and the waiting time there was about a year and a half.
I know that any time I needed to know anything about his positioning on the lists i would have to call my transplant coordinator to get more info.
I hope your ur mommy moves up the list really fast
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| Posted 10/26/10 3:56 PM |
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Cheeks24
Living a dream
Member since 1/08 8589 total posts
Name:
Cheeks
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Re: Does anyone know if there is a national kidney waiting list online?
Thanks all for the well wishes and info. My mom was literally just put on the list through her hospital. For some reason I thought there was a national list. Unfortunately my sister and I can't donate because of family history - we were excluded when she had her first interview with the hospital. Her sister will be tested when she comes up from Florida over the winter so hopefully that will be it
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| Posted 10/26/10 5:12 PM |
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Cheeks24
Living a dream
Member since 1/08 8589 total posts
Name:
Cheeks
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Re: Does anyone know if there is a national kidney waiting list online?
Posted by springsandra
It varies from state to state and county to county.
Where my Aunt lives in FL, it's a 2-year wait, but one county over it's only a 6-month wait, average.
My other aunt donated a kidney to my mom (PKD runs in our family which is why all the kidneys needed... stupid disease) but otherwise she was told it was about a 5 year wait where she lived in NY, but that was several years ago. She wasn't that eager to be on the list. It was like she "enjoyed" dialysis or something.
Wishing your mom the best! Kidney failure is really scary, but post-Op, my mom is doing amazing as far as being able to live her life again. Before she was tied to those machines 3 days a week for 4 hours at a time. Now she's been in the hospital 5 times since the transplant last August, but it's mostly because when they find infections she needs to go on IV antibiotics. The kidney itself is perfectly healthy!
That's great your mom is doing well. My mom does home dialysis (only a limited amount of people in Queens do this) 5 days a week 3 hours a day. She was in a center prior to this and it was horrible for her - 3 days a week 4 hours a day. Being home has been better for her. She used to lose complete days.
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| Posted 10/26/10 5:15 PM |
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springsandra
Baby girl has a baby brother!
Member since 11/09 7155 total posts
Name:
Sandra
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Re: Does anyone know if there is a national kidney waiting list online?
Dialysis is a really tough experience for everyone. My mom never did the home type because she's a really sloppy person in general and her home wasn't hygienic enough to do it. I think she would've been scared, too. But she didn't mind going to the centers. She'd even travel to Florida and get dialysis there. She was on dialysis for 3 1/2 years, always 3x a week, before her transplant.
I don't know if your family has PKD, but the PKD foundation is an amazing resource for anyone with kidney disease or failure. They have support groups all over the place (my mom is a member of the LI chapter, and I've done the walk on Long Island, in the city, in CT, and in NC, all in the past 5 years). There is an amazing amount of information out there and knowledge = power in my book!
My aunt was diagnosed recently, but it doesn't usually manifest until the late 50s to need dialysis. I'm still negative but you can have false negatives into your late 30s. Scary stuff. 
Wishing you the very best! North Shore Hospital in Manhasset actually had its transplant celebratory reception last night because they have had such success over the past few years! Technology is absolutely amazing!
Please let me know if you have any questions or if there's any way I can help.
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| Posted 10/26/10 7:30 PM |
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Bluepixie
Mamarazzi
Member since 6/07 2618 total posts
Name:
Laura
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Re: Does anyone know if there is a national kidney waiting list online?
Posted by Mici C
Posted by rojerono
I don't know that they'd actually have that kind of information on line.. it seems that it would violate HIPPA in every way imaginable.
I'm sorry for your mom - I think she can ask her doctor for the information she seeks though.
I didn't even think about HIPPA. Thank you.
People are listed on the UNOS (United Nation for Organ Sharing) registry. They are placed in order of severity of their illness and prognosis once kidneys are received. But someone who is #1 with a A+ blood/tissue type will not necessarily get the first set that becomes available. They'll get the first set that matches their blood and tissue type.
Sending lots of that she gets a match soon!!!!
Here's the UNOS website if you want to see some more information on wait times and procedures.
UNOS website
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| Posted 10/26/10 8:34 PM |
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Cheeks24
Living a dream
Member since 1/08 8589 total posts
Name:
Cheeks
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Re: Does anyone know if there is a national kidney waiting list online?
Posted by springsandra
Dialysis is a really tough experience for everyone. My mom never did the home type because she's a really sloppy person in general and her home wasn't hygienic enough to do it. I think she would've been scared, too. But she didn't mind going to the centers. She'd even travel to Florida and get dialysis there. She was on dialysis for 3 1/2 years, always 3x a week, before her transplant.
I don't know if your family has PKD, but the PKD foundation is an amazing resource for anyone with kidney disease or failure. They have support groups all over the place (my mom is a member of the LI chapter, and I've done the walk on Long Island, in the city, in CT, and in NC, all in the past 5 years). There is an amazing amount of information out there and knowledge = power in my book!
My aunt was diagnosed recently, but it doesn't usually manifest until the late 50s to need dialysis. I'm still negative but you can have false negatives into your late 30s. Scary stuff.
Wishing you the very best! North Shore Hospital in Manhasset actually had its transplant celebratory reception last night because they have had such success over the past few years! Technology is absolutely amazing!
Please let me know if you have any questions or if there's any way I can help.
Wow that is scary to deal with. No, thankfully PKD doesn't run in my family. My mom ended up with renal failure because of a virus that caused severe dehydration while at a hospital. This top hospital had actually sent her home not knowing she was severly hydrated.  Her transplant would be done through Mt. Sinai in the city which is rated number 4 or 6 as top transplant hospitals in the US.
I very much appreciate every ones kind words and prayers This is all new to us so I'm absorbing as much info as possible right now.
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| Posted 10/26/10 8:40 PM |
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janet
WITH LOVE MY ANGEL MISS YOU!!!
Member since 5/05 12823 total posts
Name:
janet
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Re: Does anyone know if there is a national kidney waiting list online?
FIRST AND FOREMOST
second Like others said it is a hippa thing. you can only access the list if you are certified to see the list.
I PRAY someone is selfish enough like i was to donate a loved ones organs and your mom gets well. My late husband saved a little girl(9) and a 20 year old girl with his kidneys. I will be praying very hard for you mom and family
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| Posted 10/27/10 11:09 PM |
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