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Author Topic: Webinar on research into minimizing the need for immunosuppressants  (Read 2883 times)
MooseMom
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« on: June 12, 2015, 01:47:38 PM »

I got a letter today from my tx center, The University of Wisconsin - Madison, informing me of a lecture/webinar on June 25th featuring discussion about research into minimizing the need for anti-rejection meds.  Here's the link if you are interested in viewing.  It's free.

http://www.uwhealth.org/surgery/at-the-forefront-patient-education-series/45431#.VXtC2yRj2kk.facebook

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: June 13, 2015, 10:25:56 PM »

Looks interesting. I will register to view as I cannot attend. Thanks.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
SooMK
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« Reply #2 on: June 14, 2015, 07:35:16 AM »

Thanks for the link. I've registered for this. It's a very exciting idea and I'm looking forward to hearing about it.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
SooMK
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« Reply #3 on: June 26, 2015, 12:05:47 PM »

This was an interesting webinar. Not quite ready for prime time yet. Certain drugs along with donor stem cells would be administered at transplant then 11 days later there would be mild targeted lymph system radiation daily for two weeks. (Correct me if I'm misremembering this.) Immunosuppressive drugs would be given and slowly over 6-9 months tapered off. Possibility for applying this protocol for exisiting transplant recipients yet to be studied. The expense of the drugs and the side effects are the driving force behind this. Exciting advancement.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Deanne
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« Reply #4 on: June 26, 2015, 12:21:00 PM »

Is it being considered only for living donors?
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
SooMK
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« Reply #5 on: June 27, 2015, 07:41:25 AM »

No, living donor or deceased donor. The bone marrow donations come from all over the world. I didn't realize that bone marrow donations are now much less invasive than they used to be (or at least I was under the impression they weren't easy).
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
MooseMom
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« Reply #6 on: June 27, 2015, 08:28:05 AM »

It was an interesting webinar despite the fact that most of the research is being done for patients who are about to be transplanted with a living donor organ.  They touched upon the topic of chimerism which, if you recall, was what cariad went through several years ago at Northwestern (her donor was her husband).  Again, this is really for people with a living donor lined up.

There has not yet been much research on how to change the current drug protocol for patients who have already been transplanted and have had their new organ for more than a year, which was disappointing.

Another interesting area of research was the idea of irradiating the entire lymphatic system before transplant in order to prepare the recipient for transplantation.  I think they were looking at weakening the entire immune system by radiation instead of by medication.

The webinar was recorded, so once it is available, I'll try to find a link.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
noahvale
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« Reply #7 on: June 27, 2015, 09:10:03 AM »

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« Last Edit: September 23, 2015, 09:11:36 AM by noahvale » Logged
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