michalmichalik.bsky.social
@michalmichalik.bsky.social
❤️ To everyone affected by this family curse.
September 16, 2025 at 8:33 AM
I've gradually increased from ~1L a day to 6L over a year. 4.5L during the day and 1.5L throughout the night. I'm PKD1-T so the worst of the lot, so questionable whether it will help and to what degree, but buying myself even days may keep me well until CRISPR or other therapy will save my life.
September 16, 2025 at 8:32 AM
How much is too much? - 8L is not medically recommended. Also, with ADPKD it's even more important to drink in small sips and as frequently as you can but not to exceed 700ml per hour. I'm at 6L a day plus diet, however as on strict keto-time restricted diet, there isn't all that much fluids in it.
September 16, 2025 at 8:32 AM
Q from scientific mud-blood here - If I'm connecting the dots correctly, then this would be relevant also to mitochondrial failures in ADPKD, or am I missing here anything? Meaning that number of treatments of most cancers, ADPKD and diabetes could overlap for the benefit of affected patients?
April 16, 2025 at 9:16 AM
Hi Roman, and anyone in the ADPKD research world, may you have any use of ADPKD patient, I would love to take a volunteering part in helping to find a solution or treatment of this condition. This via testing any lifestyle changes, trials etc. in any case, huge thank you for all your hard work! ❤️
March 18, 2025 at 9:52 PM
Reposted
Want to learn more about the science of xenotransplantation? Check out this interview with transplant nephrologist Vineeta Kumar, M.D., from our latest issue of PKD Life.
www.nxtbook.com/nxtbooks/pkd...
PKD Life - Fall 2024
Experience our interactive, profoundly engaging digital publication!
www.nxtbook.com
February 18, 2025 at 10:15 PM
Reposted
➡️ Two companies have received FDA approval to conduct clinical trials transplanting genetically modified pig kidneys into patients with kidney failure. The first of these trials is set to begin mid-year.
www.kidneyfund.org/article/fda-...
FDA greenlights first clinical trials for genetically modified pig kidney transplants in humans
Two companies have received FDA approval to conduct clinical trials transplanting genetically modified pig kidneys into patients with kidney failure
www.kidneyfund.org
February 18, 2025 at 10:15 PM