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Kevin J. Fowler @gratefull080504.bsky.social · 15/05/2025

Thank you Eric for taking the time to read the article. As I point out in the article, it is time for the transplant community to acknowledge we need to move towards improving QOL and participation in life. Survival is not enough. You understand the issue completely with home dialysis.

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Kevin J. Fowler @gratefull080504.bsky.social · 15/05/2025

Happy to have a discussion on the subject with you. I firmly believe QOL + participation in life is where the community should prioritize.

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Kevin J. Fowler @gratefull080504.bsky.social · 15/05/2025

I completely agree with your statement. I think the implementation of PROMs allow patients to be heard. Speaking for myself, I have often felt unheard. When patients felt heard, I think the process becomes easier for both parties.

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Kevin J. Fowler @gratefull080504.bsky.social · 15/05/2025

Thank you very much for reading the article.

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Kevin J. Fowler @gratefull080504.bsky.social · 15/05/2025

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

bit.ly

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...

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

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

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

Agreed, and the further phenotyping will help lead to treatments for AMR. Kidney transplant physicians need more tools to preserve kidney transplants. The SONG initiative showed that kidney transplant recipients feared going on dialysis more than dying #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

and resarch that will lead to treatments that are FDA approved. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

FSGS is now viewed as a continuum. I think rejection is moving in that direction as well. It is a mult-factorial issue that needs to be address in a similar manner. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

Good question that I hope is answered with future research. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

Exactly. It is beginning to occur with IgAN + it is really need in kidney transplantation. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

I will add another hopeful thought. Some of the medications approved for DKD are now being studied in kidney transplantation. They have anti-inflammatory properties that may dampen the inflammatory cascade. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

There is no consensus. Some programs do DSA testing for high risk patients, some for cause, and some annually. I believe the lack of FDA approved treatments has result in a lack of consensus. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

A very important kidney transplant precision study. Understand the various phenotypes + deliver targeted effective treatments #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

I wish surveillance DSA testing was done more often. It doesn't identify all of the problems but it is a good start. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

U of Wisconsin represented the US for adult recipients. Pediatric recipients were included as well. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

I have seen many friends lose their kidney transplants prematurely. None of the current treatments in the US are FDA approved. Moreover, generally peaking recipients don't receive AMR education. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

Speaking from professional experience surveillance DSA testing is not done routinely. I now have a annual DSA test surveillance test #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

I will add this for discussion. The role of inflammation is very important. I work out routinely on my Elliptical since my transplant. I wish there were studies about the role of reducing inflammation + whether that may reduce the inflammation process #Nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

I am a fan of understanding it so that treatments can be found for AMR #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

I have. Very important work to help strategy populations at risk + to develop AMR treatments #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 30/04/2025

#nephjc COI Biogen Worked in kidney transplant since 2017. Consulted for CSL Behring on AMR + now with Biogen KTX since August 2004

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Kevin J. Fowler @gratefull080504.bsky.social · 03/04/2025

Malignant stupidity is a nice choice of words. I would add narcissistic stupidity as well.

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

Need to depart. Take care everyone. If you ever have questions regarding #adpkd, contact me any time. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

Much more aggressive + imposes a greater quality of life isssue for women too. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

In addition the patients have seen relatives on dialysis. That is a very strong motivator. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

The quality of life issues with tolvaptan create a significant burden for the user. There is a deep need for additional treatments #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

I believe ADPKD has a high pre-emptive kidney transplant %. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

I am curious why SGLT2i are not recommended? What is the risk? I believe there is trial in France with SGLT2is in ADPKD. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

The pain was a real issue before kidney transplant + has continued post kidney transplant. It is difficult to predict its occurrence #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

That was the direction that I was provided + and I was able to achieve the BP targets. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

I think our experience is very common. As with many kidney diseases, the knowledge still remains quite limited. #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

Genetic testing has to be thought through because of some negative consequences such as insurance policy denial #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

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

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

Another stumbling block was the lack of surrogate endpoint. TKV helped to move the field thanks to Mayo and Dr. Torres #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

@gratefull080504.bsky.social No COI related to #ADPKD Several generations of our family have been impacted by #adpkd including me #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 26/03/2025

Tolvaptan was approved on April 24, 2018, not 2012 #nephjc

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Kevin J. Fowler @gratefull080504.bsky.social · 18/03/2025

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.

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