Kevin J. Fowler
gratefull080504.bsky.social
Kevin J. Fowler
@gratefull080504.bsky.social
Consultant, The Voice of the Patient;COIs: Alexion, Bayer, Biogen, Dimerix, eGenesis, Enyo, Maze Therapeutics MediBeacon, Memo Therapeutics, Phreesia, ProKidney, Purespring Therapeutics , Travere https://www.linkedin.com/in/kevinjohnfowler/
I would like to thank Maarten Naesens, MD for the opportunity to write my position statement on where the field of transplantation needs to shift to. Now is the time to improve quality and participation of life after transplant. bit.ly/4jQToAP #openaccess
Frontiers Publishing Partnerships | Life After Kidney Transplantation: The Time for a New Narrative
The first successful kidney transplant in December 1954 between the Herrick brothers ushered in a new field of medicine. Over the almost seventy years, tho...
bit.ly
May 15, 2025 at 4:45 PM
Thanks for allowing me to part of the conversation. My final thoughts: This research underscores that AMR is a continuum and the leading cause of graft failure. There is a critical need to understand AMR + develop preventive strategies and treatments so that grafts are not lost. #nephjc
April 30, 2025 at 1:57 AM
#nephjc COI Biogen Worked in kidney transplant since 2017. Consulted for CSL Behring on AMR + now with Biogen KTX since August 2004
April 30, 2025 at 1:03 AM
Need to depart. Take care everyone. If you ever have questions regarding #adpkd, contact me any time. #nephjc
March 26, 2025 at 1:46 AM
The pain was a real issue before kidney transplant + has continued post kidney transplant. It is difficult to predict its occurrence #nephjc
😖 Pain is common in ADPKD—ruptured cysts, infections, or just pressure effects.
But severity ≠ size.
Tiny cysts can cause big trouble. #NephJC
March 26, 2025 at 1:26 AM
There can be difference in families. I had PKD1 + my sister has PKD2. I went into kidney failure at 43 + she is 60 with native kidneys #nephjc
ADPKD = caused by mutations in PKD1 or PKD2 — and sometimes others.
Genetics shape phenotype & prognosis. #NephJC
March 26, 2025 at 1:12 AM
@gratefull080504.bsky.social No COI related to #ADPKD Several generations of our family have been impacted by #adpkd including me #nephjc
March 26, 2025 at 1:03 AM
I will see you tonight #nephjc #adpkd
March 26, 2025 at 12:02 AM
Like Tracy Morgan, I am a kidney transplant recipient and I had a poisoning a year ago. I almost died. Food poisoning is serious issue for kidney transplant recipients. I hope his kidney is doing well after experiencing vomiting.
Tracy Morgan says he's "doing ok now" and said his medical episode last night was food poisoning
March 18, 2025 at 5:27 PM
Please consider RT #nephsky
We urge the Administration and Congress to reconsider and roll back these actions immediately so potential cuts can be made in a thoughtful and safer manner. To do otherwise may result in absolute tragedy for the American people.
NKF Statement on Mass Staff Terminations at HHS
www.kidney.org
February 18, 2025 at 10:01 PM
Explore this gift article from The New York Times. You can read it for free without a subscription. www.nytimes.com/2025/02/03/h... Good background on the forthcoming #xenotransplanation trial
F.D.A. Approves Studies of Pig Organ Transplants for Kidney Patients (Gift Article)
The research offers hope to tens of thousands of patients with kidney failure who are on a long waiting list for an organ transplant.
www.nytimes.com
February 5, 2025 at 2:45 PM
The FDA has provided United Therapeutics approvaal to begin #xenotransplantation trials in human mid-year 2025
February 3, 2025 at 10:31 PM
@kidneytransplant.bsky.social : It is always great to see you! I am thrilled to be involved with the TRANSCEND trial. AMR is huge unmet need in kidney transplantation.
Always a pleasure to hear Kevin Fowler @gratefull080504.bsky.social to give such an amazing patient perspective.

Here at the TRANSCEND investigator meeting.

If you have been diagnosed with Antibody mediated rejection please discuss with your provider the clinical trials available in this space
February 2, 2025 at 10:12 PM
@kidneytransplant.bsky.social : The MediBeacon device will have a role in kidney transplantation.
February 1, 2025 at 11:21 PM
@askrenal.bsky.social what is the lowest FDA approved use of Ozempic in DKD patients?
January 31, 2025 at 7:55 PM
@sumitmohan.bsky.social : As you and your colleagues point in your article, patients are not included in this discussion. Will the OOPTN Modernization address this gap in shared decision making? #nephjc
In 2022, we did fewer than 20,000 kidney transplants and discarded thousands more…. and it took nearly 30 million offers. Kidneys that reached patients were turned down twice as often compared to 2 years prior. #broken #kidney #allocation
January 23, 2025 at 5:13 PM
Great work by @sumitmohan.bsky.social + Jesse Schold,PhD "Moreover, it is not clear to what extent organ discard is a function of inefficiencies that are
overwhelming the system, rather than a consequence of organ quality itself." Hopefully the OPTN Modernization Initiative elevates #patientvoice
Hugely shocking (to me) high discard rates which have risen post changes to improve the state of things (KAS250)

www.kireports.org/article/S246...

From @sumitmohan.bsky.social et al in @kireports.bsky.social

The discussion is very illuminating for those like me who can’t fathom this

#NephSky
January 23, 2025 at 3:57 PM
The issue is not pain management. It is the fact dialysis treatment that has not evolved into a treatment that allows someone to participate in life. That is where the discussion needs to be focused upon. #nephjc
Life is a Battle… and so is pain management in CKD.
💊 Check out these heat maps by @kidneyboy.bsky.social on 2018 —NSAIDs use? 💊 Opioid?
🔥 Are we over-relying on pain control in CKD? #NephJC
January 23, 2025 at 2:15 AM
#nephjc I need to depart soon. The need for innovation in dialysis treatments is deeply needed. Nephrologists need better treatments so they can offer their patients more. This is where I would like to shift the conversation. Also @hswapnil.medsky.social and I agree on many subjects!
January 22, 2025 at 2:38 AM
Kudos again to the sponsor! PROMs are needed in #kidneydisease #nephjc
Secondary Outcomes
Additional reports (outside of the BPI questions) of pain indicators and opioid use, as well as pain-related clinical events. The study also examined symptoms that accompany pain (i.e. anxiety, depression), and symptoms possibly related to pain treatments. #NephJC
January 22, 2025 at 2:27 AM
Impressively - patient partners were involved in all aspects of the trial!

See figure

Kudos to UPenn trial group and the NIDDK to make this happen

#NephJC
January 22, 2025 at 2:24 AM
#nephjc If a treatment results in 1/2 the population experiencing pain , shouldn't the priority be on finding improved dialysis treatments?
January 22, 2025 at 2:16 AM
#nephjc The fact that 50% of hemodialysis patients experience pain underscores the need for innovation in dialysis treatments.
January 22, 2025 at 2:08 AM
January 22, 2025 at 2:01 AM