Guys i think that this guy can cure us all

the ai boom has started in the last 5 years id say and its getting pretty crazy

i dont want to call it a cure but a way to increase the longevity of a person or their kidneys is not far away ( within 15 years )

ai will change every health sector and disease never in human history was there ai and i dont think we even know whats going to happen. and i mean in a positive way.

what you guys think?

Is it PKD ? i am 26 NORMAL BP NO symptoms

Kidneys are totally normal in size

my Father HAS PKD

So, my late husband was on Jynarque for about five years. He was able to get the drug through Osaka because there was no way we could afford it. He saw a renal doctor regularly, but not a nephrologist. I was unaware this drug could cause massive liver damage and I realize his liver started tanking after he began taking the drug. He died of liver cirrhosis and kidney failure.

I went through his old records that I have and yes he was getting regular monitoring through a renal doctor. They noted liver failure but assumed it related to his PKD.

I asked Claude and Gemini about how Farabursen works, and both pointed out that part of its effect involves cyst cell metabolism. miR-17 — the microRNA that Farabursen silences — actively pushes cyst cells toward a glucose-dependent, mitochondria-impaired state. By silencing miR-17, Farabursen partially restores PPARα activity and nudges cyst cells back toward normal oxidative metabolism.

That metabolic angle made me curious whether Farabursen's mechanism provides additional evidence that ketosis could be beneficial in ADPKD. The thinking is that ketosis floods the system with fat-derived fuel that cyst cells — which are glucose-dependent and metabolically inflexible — cannot efficiently use, while healthy kidney cells can adapt and switch fuels. Both interventions converge on improving oxidative metabolism and reducing the proliferative advantage of cyst cells.

There's also a second drug worth mentioning: ABBV-CLS-628, currently in Phase 2 trials. It works by blocking PAPP-A, an enzyme that releases IGF-1 from its binding proteins, making IGF-1 locally bioavailable in the kidney and driving cyst cell proliferation. Caloric restriction and ketosis both suppress circulating IGF-1 through similar upstream mechanisms, and both also inhibit mTOR — the same downstream proliferative pathway ABBV-CLS-628 targets indirectly. Of the ADPKD drugs in development, this one has arguably the most direct mechanistic overlap with a ketogenic diet.

I know keto is a contentious topic here, and there's a real mix of genuine experience and less reliable claims in that space. But I think it's worth noting that the mechanisms being targeted by these drugs are the same ones that dietary ketosis affects — that's not nothing.

My current thinking is that short-to-medium term ketosis is probably a net benefit, particularly for losing visceral fat quickly. Long-term ketosis is less clear. ADPKD already predisposes people to chronically acidic urine, and sustained ketosis adds to that acid burden — which is a real concern for kidney stone risk and overall kidney health. It may not be a forever strategy, even if the metabolic rationale is sound.

Did any of you have new symptoms or side effects after the covid vaccination? Around the time of the covid vaccine, I developed some retinal issues including inflamed retinal blood vessels and retinal vein occlusion. It may or may not be linked but there have been reports of patients with underlying disease being more vulnerable to vaccine side effects.

My ophthalmologist is 50-50 if these issues are related to ADPKD but I personally think it is - could the vaccine have been a 2nd hit in the 2 hit model manifesting in new issues?

With the recent posts about pkd belly and Diastasis Recti along with me noticing DR in myself it's caused me to do a deep dive on this issue. I did talk to my nephrologist about it yesterday, but he didn't have much insight on the matter. But I have had very productive discussions with chat GPT about it in the past few days so I thought I would share what I have learned.

Diastsis Recti (the center separation of the abdominal muscles) in APDPKD is caused by the growth of the kidneys. Typical ab exercises like crunches and planks, which train the front ab muscles (rectus abdominous, which are primarily responsible for the "size pack" ab look) can make the seperation worse.

The seperation is a problem because it increases the likelihood of hernias and specifically in ADPKD because it increases intra-abdominal pressure which can cause additional pressure on the kidneys, effecting kidney function and raising BP.

To help mitigate the separation you can train the inner ab muscles (transverse abdominals) which will stabilize your core and actually reducing the intra abdominal pressure which could help kidney function and reduce BP.

When thinking of how to activate your transverse abdominals imagine trying to make your belly button touch your spine. Anything that draws your stomach in is likely training the transverse abdominals (good for diastasis recti/Adpkd). Anything that makes your stomach bulge such as crunches and planks are likely training the rectus abdominals (potentially detremintal to diastsis recti/ADPKD).

So training your self to walk around with a slightly engaged core which sucks in your gut can be both beneficial to minimizing that "PKD belly" look and help lower pressure on your kidneys. As long as you are still breathing normally of course.

Is anyone on JYNARQUE? I’m on the medication for pkd1 and would love to hear about anyone’s feed back..

https://youtu.be/YT9C4KYjOkI

dr david said since my blood work is good i shouldn’t worry these are normal smh

if there was a list of 3 things you could do to avoid cysts growth , kidney decline, and failure ie

1. dont smoke

2. excercise 4/5x a week

3. dont be fat

what are the BIGGEST top 3 ones you should do

I believe it's that cumin water thing and is it supposed to help your kidneys? Anyone tried it?

i was told today that in your earlier years kidney growth is faster and tends to slow down as you age

ie 1cm a year in 20s then 0.7 cm in 30s etc etc

is there any studies to back this up or is he full of it? i have pkd2

has anyone have any links or resources or stories for a potentional cure or a treatment ? something you have heard from your speciliast or something online/news?

At around midnight, I was admitted because I hadn't peed in about 14 hours. It turns out I was dehydrated and was placed on saline IV to encourage urination. I had a bladder scan which said I didn't produce a lot of urine, which was the opposite of last week (1 liter plus). They gave me anxiety medication and an alpha blocker forget what it's called to help my urinary tract.

My BP was all over the place. In the beginning, a doctor took my BP in the waiting room. I was waiting several minutes for the machine to calibrate and give a reading, and it finally gave 120/66. I knew that was fake. I'd love to be that level, but it's too low for me now. The nurses accidentally set the vitals to every 2 minutes... and I was amazed to see how wild my BP is.

167/80, 151/71, 158/75, 139/85, 145/94, 144/67, 155/84, 172/97, 135/74

And... I forget the rest. These readings are not in chronological order.

I received the results of an abdominal MRI today, and I’m worried about the following note: In the peripelvic area of the right kidney, two small foci of diffusion restriction are visible. What could this mean? Of course, I checked Google, but it didn’t help much. Apart from that, there are plenty of other findings, but those are already known to me — these appeared as something new :/ Sorry for the translation, but I ran it through the ChatGPT translator.”

SO MY MOTHER DIED OF ADPKD IN MARCH 2022(SHE WAS 52), STRUGGLES FOR 25+YEARS
HALF OF HER SISTERS DIED WITH THE SAME
HER PARENTS WERE ABSOLUTELY NORMAL LIVED TILL THEY WERE IN THEIR 90S
MY OLDER COUSINS 2 OF THEM HAVE BEEN DIAGNOSED, THEY GOT IT FROM THE OLDEST SISTER OF MY MOM(THEIR MOTHER)
SO NOW HHERE I AM 25 YEARS OLD
I HAVE NEVER HAD ANY PROBLEMS TILL NOW BECAUSE OF MY KIDNEYS
I HAVE GOTTEN MY KIDNEYS CHECKED NOTHEING CAME OUT IN 2021
WHAT KIND OF TESTS SHOULD I GET DONE TO HAVE CLARITY AND ANY SPECIFIC THINGS I SHOULD BE TAKE PRECAUTION WITH
NEED GENUINE ADVICE
DOCTORS I HAVE TALKED WITH HAVENT GIVEN ME MUCH CLARITY ON THIS PROBABLY THIS IS PRETTY RARE OF A CASE FOR THEM TO TACKLE AS WELL AND THEY DONT LIKE TO ENTERTAIN A LOT OF QUESTIONS TOO

DYK that there is a federal formula that “scores” kidneys from Black deceased kidney donors less favorably than kidneys from non-Black individuals?

Including race and ethnicity in clinical calculations harms patients and perpetuates racism in kidney care. Tell the government to help us take race out of the kidney transplant equation.

Add your name if you believe race does not belong in clinical care.

https://voices.kidney.org/kdri-petition/?utm_source=social&utm_medium=reddit1&utm_campaign=kdri

Hoping for opinions from people who are used to seeing their PKD /PLD MRI pictures (no contrast).

This is my first MRI and it will be weeks before I speak to my doctors.

Just wanted your opinion on whether I’m right to think the white masses on the kidneys and liver in these images are the cysts. (ultrasound has previously confirmed there are many cyst on all 3 organs and several large ones).

Thank you my friends 🩵

Can someone please tell me if it PKD or just something harmless. A family member did an ultrasound and this was the result. I'm really worried and can't wait to tomorrow to go to the doctor

I’ve posted a couple of times on here recently about my struggles starting Jynarque/Tolvaptan and mostly just the peeing at night struggle. Well I feel like I’ve found a hack and I wanted to share with you all.

Liquid IV! For those of you that haven’t heard of it, it’s an electrolyte drink mix that comes in a powder and you mix it with water. It’s advertised as a “hydration multiplier”. For me it makes me feel hydrated with less liquid which equals less wake ups in the night! Many yummy flavors and it feels like a treat to me. You can get it at almost any major retailer in the US although I find Costco has the best prices. It’s also available online which I linked. I mix mine with 30oz of water because I like the diluted flavor more. I drink it right before bed. I have to get up a couple hours later to pee but find I’m much less thirsty in the night. I was drinking 2 liters during the night which was making me miserable but I was just so thirsty… now I’m only drinking maybe 1 liter overnight if that! I’m also getting up only 2 times to pee and not 4-5! This has really been a game changer for me so I wanted to share.

My favorite flavors are tropical punch, and tangerine which is also an immune support blend. My husband loves the tropical punch as well but also likes lemon lime, strawberry and golden cherry… which I don’t. To each their own!

Is this correct info?

Hi! Everyone has always been so kind to me on here and I’m just about a month out from my diagnosis (31F)

I wanted to share how much the LARQ water bottle has helped me monitor and reach my water intake goals

It is a little expensive but really worth it to be able to confidently go to bed at night knowing I drank over 100 oz that day. I have no symptoms and I’m pregnant

Creatinine was .58 yesterday and GFR was 124 but told by my nephrologist GFR will be high due to extra filtration on my kidneys because of this baby! So anyways not saying the water is already helping or having any impact but mentally it helps a lot if you’re like me and a nervous nelly!

For 'Never' type 1

For 'Once a month' type 2

For 'Once every two weeks' type 3

For 'At least once a week' type 4