KidneyLyfe — KidneyLyfe

TransplantLyfe In-Person/Virtual Event in Philadelphia November 13th

onlylivingboyinny — Tue, 30 Sep 2025 18:46:46 +0000

Hey, all. I'm excited to visit the City of Brotherly Love for this year's Patient Summit and meet many of you for the first time!

Whether you’re a patient, or care partner, or clinician, the TransplantLyfe – Temple Health 2025 Patient Summit offers a unique opportunity to engage with, and learn from, others and become more empowered in your transplant care!

Learn more about the guest speakers, agenda, and register to join us: https://transplantlyfe.com/resources/transplantlyfe-temple-2025-patient-summit

Tim Andrews

Karin — Wed, 29 Oct 2025 14:01:01 +0000

Sadly the xenograft that lasted almost 9 months is now removed. I believe this was the longest xenograft since the 1964 chimpanzee graft. In interviews, Tim says that this still gave him tine off dialysis and he appreciated this very much.

https://www.cnn.com/2025/10/27/health/pig-kidney-transplant-tim-andrews

Kidney Study

TransplantGr8ness — Thu, 25 Sep 2025 23:29:53 +0000

Hello Everyone 👋🏾,

I am 2 years post Kidney transplant and I just signed on to be a part of a study. How many of you or who has been a part of a post transplant study. There is an optional portion where they want to do two kidney biopsies. I've had plenty of biopsies before with no problems, however I just got this kidney it's starting to do better than ever I am irrationally and illogically afraid to do that optional part of the study but I want to do it. For Science! And the transplant recipients that might benefit from this study.

Pig to human lung transplant

Berriosa1234 — Tue, 26 Aug 2025 14:20:49 +0000

did anyone see the latest on the pig-human lung transplant in china, thats pretty awesome.

Hows everyone doing today?

Alex

Ibox scoring system - more options for us to keep our organs alive in the future?

Karin — Wed, 30 Jul 2025 18:49:36 +0000

We are excited to announce that the FDA has decided to review the ibox scoring system as a potential endpoint in the transplant drug approval process. This would introduce long term outcomes and not just focus on the first year graft survival! The hope is for more drugs to enter the market, and for us patients, to have more options to keep our precious organs alive!

https://www.prnewswire.com/news-releases/transplant-therapeutics-consortium-receives-fda-notice-of-reviewability-for-the-ibox-scoring-system-full-qualification-package-302513489.html

New CNN Article Outlines Longest Pig Kidney Success in Living Human Recipient

onlylivingboyinny — Fri, 11 Apr 2025 18:12:52 +0000

CNN: Transplanted pig kidney removed after functioning in living patient for more than four months

“In early April, she had a reduction in renal function due to acute rejection. What triggered the rejection episode after a long period of stability is being actively investigated, but it followed a lowering of her immunosuppression regimen to treat an infection unrelated to the pig kidney,” Dr. Robert Montgomery, director of the NYU Langone Transplant Institute and chair of NYU Langone Health’s surgery department, said in a statement.

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This certainly is encouraging news overall for this breakthrough procedure! What do you all think?

I am in Boston for the National Kidney Foundation Spring Clinical meeting

Karin — Thu, 10 Apr 2025 11:10:18 +0000

Would love to see those of you who might have time but more importantly - is there anything you would like me to ask the thought-leaders who are here presenting and networking here??

FDA news - important for all kidney recipients

Karin — Wed, 20 Nov 2024 18:36:52 +0000

The FDA announced that it will review the iBox scoring system as a potential endpoint for transplant drugs going fwd. This is very important for all of us since this will allow for more drugs focused on long term outcomes to get approved in the future. Today, the first year survival of our grafts is excellent - over 90 percent survive - however, over time our organs do not do as well. We need better drugs to keep our gift of life alive longer!

The AST and the AST-S as well as the TTC have worked hard in this, and as Lyfebulb we have advocated at the FDA and elsewhere - we are proud of the acknowledgment and eager to see where this goes!

https://www.prnewswire.com/news-releases/transplant-therapeutics-consortium-receives-fda-acceptance-of-the-qualification-plan-for-ibox-scoring-system-302311606.html

Clinical Trial experiences

Berriosa1234 — Tue, 09 Jul 2024 00:28:09 +0000

I am getting ready to enter into a clinical trial with NYU Langone Transplant Institute to lower my antibodies to hopefully improve my odds of getting a new kidney in the coming months. Has anyone been through a clinical trial? what was your experience?

thanks

Alex

Rare Kidney Disease Foundation

Smbh4206 — Wed, 31 Jul 2024 18:30:58 +0000

I had a Kidney transplant in February 2021. My younger sister had her kidney transplant in January 2023. And our older sister is on the waitlist for a kidney transplant.

We all knew there was a family connection not only because we each had CKD but our mother and her father both died from kidney disease. We just did not know what the connection was.

My sister’s transplant nephrologist put her in touch with Dr Anthony Bleyer a Wake Forest nephrologist who has been leading the Wake Forest Rare Inherited Kidney Disease team for 25 years. After specialized genetic testing she was found to be positive for gene mutation called MUC-1. Since then, my other sister and I as well as other family members have tested positive also.

Currently there is no cure. The only treatment is dialysis and transplant. While that is discouraging, Dr Anna Greka a nephrologist with Harvard and MIT has been working on a treatment that that would halt CKD progression. That is so very encouraging! This treatment should keep many CKD patients from ending up on dialysis and needing a transplant.

With patient trials within the next 5 years and for patient trials to be successful, affected patients need to be identified. Dr Bleyer believes that every nephrologist had an ADTKD (Autosomal Dominant Tubulointerstitial Kidney Disease) family in their practice. These are families that are carriers of this gene mutation. Those families need to be located.

So, what can be done now? The Rare Kidney Disease Foundation website (https://www.rarekidney.org) contains information for both potential patients and physicians. Anyone who thinks they might be a potential patient or knows someone or a family who possibly fall into this category should check out the website. From there signup is available for evaluation and testing in addition to additional disease information.

Whether you have been transplanted or are waiting, talk to your nephrologist and have the doctor look at the RKDF’s website. There is a section specifically for physicians. Because of the rarity of this gene mutation, many doctors are just not aware.