Resources on the net I have found! Add to it!

[kitkatz]

Anyone been over to Tollidee.com a forum for kidney patients?  I just found it today and thought I would pass the word along.  I am just checking it out, so I do not have a recommendation one way or another.  You can make up your own minds.


Taken off intro to the site:
Tollidee is a combination of two German words: toll, meaning "great"
and idee, meaning "idea".

The purpose of this site is to provide an online community to educate, and support kidney patients and their family members.

Inside you will find resources to help educate and support, my blog, and a budding online community of ESRD patients and family members supporting each other.

Katherine

[kitkatz]

http://www.transplantkids.co.uk/yabbse/index.php?board=1


Called transplant kids

[kitkatz]

http://www.renalweb.com/

Huge amount of resources here.

Even better page from the same site
http://www.renalweb.com/topics/patiented/patiented.htm

[angieskidney]

ok .. here are 2 I suggest:

angieskidney.com

and

www.RSNhope.org.

[kitkatz]

I have found resources all over the web and am trying to pull them together in a few posts.  This is about half of the first folder I have on file.  You will recognize quite a few of them.  They are not in any particular oder.  Only the way I likethem or the way the landed in the folder. Of course this site is #!.  I will post the rest as I get to them.

Katherine

http://ihatedialysis.com/

http://groups.msn.com/DialysisTransplantCity

http://angieskidney.com/

http://www.dailyhemo.org/2/news.php

http://www.thekidneyzone.com/

http://www.jimcales.com/

http://kidneytransplantforkyliesmom.blogspot.com/

http://gmack359.blogstream.com/

http://www.clinicaltrials.gov/ct/search?term=Kidney

http://www.davita.com/bbs/index.php?

http://www.dialysispatients.org/index.cfm

http://www.kidneyoptions.com/

http://www.globaldialysis.com/forum/default.asp

[kitkatz]

More links I have found related to kidney disease and dialysis. I think this is it.  All that I have on file currently.  This is NOT a reccommendation of these sites, just a list of some that I found interesting when I was out looking around the web.

http://www.nutritiondata.com/

http://www.kidney.org/professionals/links.cfm

http://www.davita.com/articles/diet_nutrition/

http://www.thekidneyshow.com/ikidney_ing.html

http://www.transplantexperience.com/

http://www.renalweb.com/

http://mykidney.com/blog/category/weekly-dialysis-grind/

http://tollidee.com/journal/?m=200509

http://www.dailyhemo.org/2/news.php

http://kidneydiseases.about.com/mbiopage.htm

Katherine

[angieskidney]

thank you for including mine   I am happy now

[kitkatz]

Add to it.  The more resources we have the better.  We really need to build a good database of resources to have available to new people and old people.

[angieskidney]

Add to it.  The more resources we have the better.  We really need to build a good database of resources to have available to new people and old people.

I have a whole list but am going to bed. If you want though .. you can go thru them and verify that they are still up for me

Here they are: links

[kitkatz]

kewl!

[Rerun]

kewl!

If you go to these sights, in your signature line put "ihatedialysis.com"  You might as well promote our site while your are there.

Thanks!

[Epoman]

kewl!

If you go to these sights, in your signature line put "ihatedialysis.com"  You might as well promote our site while your are there.

Thanks!

Very good advice, thank you!

[Black]

General Kidney Info:

www.medicaleducationinstitute.org

I love the quote at this site:

"It's all about control.  Take away a patient's sense of control over his life, and you have hurt him more than any injury or disease.
"Give him back that sense of control — and you have helped him more than any drug or therapy.
He can make miracles happen."  —Gregory White Smith, Brain Cancer Survivor"
         
             *This site has the links for their two excellent sites: www.lifeoptions.org 
                                                                                     www.kidneyschool.org
           


www.ikidney.com  (check out the diet section!)

nephron.com

nephronline.com/

www.kidney.org/professionals/kdoqi/index.cfm

**************************

Dialysis Info:

www.nephrologypharmacy.com

www.nephrologypharmacy.com/downloads/US%20DoD%202005.pdf
     (Detailed info on the effects of dialysis on drugs)

www.kidneydrugcoverage.org/PatientsDialysisInCenter.htm
     (EVERYONE on dialysis and medicare needs to check out the fact sheets available here)

www.dialysisethics.org
    (yes, there are people who believe that we should expect a high level of ethics in dialysis)

**************************

Transplant Info:

www.transplantliving.org

www.unos.org/

*********************

Financial Assistance

http://www.benefitscheckup.org

http://www.cms.hhs.gov

****************************

Nutrition/Diet:

fitday.com   
          (free site for keeping a log of everything you eat - allows you to set parameters & it red flags if
            you're over or under for day/week/month)

www13.netrition.com/rdi_page.html   
           (for assistance in understanding the federal food labels)

*********************

For those w/ PKD:

health.groups.yahoo.com/group/PKDCARE
       (mail list/group - lots of experienced & knowledgeable posters and moderator)

www.pkdcure.org/home.htm
            (took me a while to navigate and find the info but there is a lot of useful stuff here)

www.pkdcharity.co.uk/helpingyou.html
            (a UK site but really good info for all of us)

http://www.cdc.gov/ncidod/eid/vol3no2/miller.htm
         (research study - USCDC - complex med info but interesting & informative read)

[kitkatz]

Hey everyone.  I was just visiting Angies site.  It is beautiful. She has put a lot of work into improving her forums. Go check it out at http://angieskidney.com/.   Good job Angie.  It does not hurt to be on more than one forum and you might learn something new. You might go crazy trying to keep up with all of the posts!

[angieskidney]

Hey everyone.  I was just visiting Angies site.  It is beautiful. She has put a lot of work into improving her forums. Go check it out at http://angieskidney.com/.   Good job Angie.  It does not hurt to be on more than one forum and you might learn something new. You might go crazy trying to keep up with all of the posts!

Wow I just saw this now! Thanks Kitkatz for your kind words!