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Author Topic: non-invasive test of immunosuppressive adequacy  (Read 3523 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: December 29, 2018, 05:29:38 PM »

I was wondering if anyone is familiar with TruGraf. Seems like a great alternative to kidney biopsies, which can be pretty scary for transplant patients, and they are not without risks. I just read about this and will check with Jenna's doctor at her next appointment. "TruGraf is the first non-invasive test of immunosuppressive adequacy" www.trugraf.com
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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
MooseMom
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« Reply #1 on: December 29, 2018, 09:02:55 PM »

I seem to remember answering a questionnaire on IHD about this, and I also seem to remember that the questionnaire led to a follow up telephone interview.  Does anyone else recall this?
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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."
iolaire
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« Reply #2 on: December 30, 2018, 06:17:05 AM »

Sort of related I had the AlloSure test done to test for rejection instead of more biopsys.
http://www.allosure.com

AlloSure is the first and only non-invasive test that assesses organ health by directly measuring allograft injury. AlloSure can accurately determine active rejection, enabling better management of your kidney transplant patients.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Cupcake
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a good year for Chevys

« Reply #3 on: December 30, 2018, 06:34:16 AM »

I, too had the Allosure test a month after transplant and the result was zero so that's very good-none of my donor's DNA showed up in my blood-that's how it was explained to me. Plans are to do it quarterly, has to be drawn/sent to a lab in California. unfortunately my private insurance has already denied payment-the allosure website says medicare covers it so I am hopeful. Any experience from anyone else getting this covered?
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PD for 2 years then living donor transplant October 2018.
iolaire
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« Reply #4 on: December 30, 2018, 07:28:42 AM »

Plans are to do it quarterly, has to be drawn/sent to a lab in California.

They do not have a schedule for me (I’m at 1.5 years). I think they would do it only if something in the labs worry them. I have some low level inflammation in my blood and the biopsy didn’t show much so it was either another biopsy or the AlloSure test.

I guess to me quarterly sounds excessive unless there are concerns. Especially if it might not be covered by your insurance. I would not want to pay a grand every quarter out of pocket for the test.

My center does 6 and 12 month biopsy’s and then stops unless there are concerns from the labs.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
okarol
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« Reply #5 on: September 04, 2020, 12:14:04 AM »

Jenna finally got an Allosure test and it is fine. UCLA kept putting off the test because they said it's still in trials and people were getting false positives and it was causing unnecessary worry. But we told them we would be consignant of that and would retest if needed. There are a couple of other tests now, one mentioned here in this KidneyTalk podcast https://www.rsnhope.org/kidneytalk/assessing-your-kidney-transplant-health/
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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
MooseMom
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« Reply #6 on: September 04, 2020, 07:57:37 AM »

Please give Jenna our regards.  Thanks for the link; I will check it out!

Hope you are well, okarol!
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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."
frugallyzing
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« Reply #7 on: September 28, 2020, 12:19:18 PM »

Jenna finally got an Allosure test and it is fine. UCLA kept putting off the test because they said it's still in trials and people were getting false positives and it was causing unnecessary worry. But we told them we would be consignant of that and would retest if needed. There are a couple of other tests now, one mentioned here in this KidneyTalk podcast https://www.rsnhope.org/kidneytalk/assessing-your-kidney-transplant-health/

That's great news. Thans for sharing the lnk
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #8 on: September 30, 2022, 11:58:05 AM »

Please give Jenna our regards.  Thanks for the link; I will check it out!

Hope you are well, okarol!

Hey I missed this one! LOL thank you! Jenna is good. She just got her Allosure and antibody panels at her 5 years check up and they are fine. Her creatinine is up a bit from 1.3 to 1.7 but they are looking at possible UTI or tacrolimus toxicity. Fingers crossed for good news.
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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
MooseMom
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Posts: 11325


« Reply #9 on: October 03, 2022, 11:01:25 AM »

Okarol, do you have any news to share about Jenna's creatinine level?  My creatinine has increased, too, and I had an Allosure test plus the usual DSA/HLA and regular labs plus a urinalysis.  Everything came back fine so am still wondering about why my creatinine has gone up.  If Jenna finds an answer, please share!

Hope you all are well!
Logged

"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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Member for Life
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Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #10 on: October 05, 2022, 12:21:48 PM »

Okarol, do you have any news to share about Jenna's creatinine level?  My creatinine has increased, too, and I had an Allosure test plus the usual DSA/HLA and regular labs plus a urinalysis.  Everything came back fine so am still wondering about why my creatinine has gone up.  If Jenna finds an answer, please share!

Hope you all are well!

We asked if it could be tacrolimus toxicity, so they lowered her tacrolimus and we'll see at her next labs how it looks. I also asked if there could be any correlation with vaccinations or Evusheld but was told they don't have any indication that it could affect her kidney function. She did have a mild UTI so that has been treated and will hopefully also improve her numbers.
« Last Edit: October 05, 2022, 12:24:04 PM by okarol » Logged


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
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