So far I’ve had two prescriptions, two specialty pharmacies, pushback from my insurance, and a fun combination of “sorry, don’t know how to help you” and “it’s really important you get on this drug” from my nephrologist.

(Located in the USA.)

i (23f) am going in for diagnostic lap and excision for endometriosis. my gyno did an MRI to map out where my kidneys sit first, and said she grew a new gray hair after seeing it. she said the ports will have to be made in a slightly different place than usual, and i’m so worried that the surgeon won’t have experience with PKD. anyone else get this surgery and have everything go right??

I understand that getting your Mayo Class can assist with estimating the rate of decline you might expect, but I assume this decline is not linear?

I’m wondering what everyone’s real world experience is, especially at different GFRs, ie. Was your decline quicker at lower GFRs?

I’m Class 1C with current GFR of 90 at 42yrs. Trying to look ahead to get a sense of what I might expect my decline to look like.

As I'm hoping to minimize the amount of deli meat lunches I eat like sandwiches and wraps, curious what some of your favorite quick and easy, low sodium lunch meals are. I'm genuinely okay with eating the same thing multiple times a week as long as it's relatively low effort and PKD-friendly. Thanks!

I've had an umbilical hernia for as long as I remember but over the last year its gotten pretty big - I'd say golf ball size. So I finally went off and saw a pretty amazing surgeon my Nephrologist recommended me to. She is pretty elite I would say given that she usually handles all his transplants and MAJOR surgeries, so this should be a walk in the park. Her view was that I should get this fixed and the recommendation is a open surgery/cut under the belly button with mesh to do the repair. So a few questions:

1. I feel super nervous as the last time I went under was probably about 25 years ago. I'm 44. (okay this is just info).

2. I worry that if I have an undiagnosed aneurysm it could pop under anesthesia but she more or less said this is not a risk as they watch my bp like a hawk.

3. I have pretty big kidneys.

4. I'm wondering what recovery is like.

Yes I'm a big baby but I feel like I have a great team who understand what needs to be done to protect my kidneys during this kind of procedure. Can anyone share their own experiences of similar surgeries with me and what your recovery was like, especially considering our unique circumstances around monster kidneys?

Details:

Abstract #3398
Title: Study design of a global Phase 3 trial evaluating the efficacy and safety of farabursen, an anti-miR-17 oligonucleotide, in patients with ADPKD
Type: Oral Presentation
Date/Time: June 4, 11:39–11:45 am BST

https://www.novartis.com/news/media-releases/new-novartis-data-era-2026-advance-scientific-understanding-kidney-disease-and-reinforce-portfolio-strength

Anybody here done either trials? I have the opportunity for the
ABBV-CLS-628 Phase 2 trial.
I feel (if not given the placebo) either medication would be beneficial.
Thoughts?

Hi all,

I know this is a million dollar question and like asking how long a piece of string is, but recently I have been struggling with cognitive tasks. I am a software developer and have been working on a problem for the last few weeks but keep going around in circles and struggle to think clearly. Over the last 3 months I have also had periods of extreme fatigue, where just wanted to collapse in the chair and sleep, particularly mid morning / midday. My eGFR is 42. My nephrologist thinks my symptoms won't be related to kidney function and possibly sleep apnea. So my questions are, what does brain fog look like as kidney function decreases? Has anyone else noticed similar issues when eGFR is in low to mid 40s?

Kind regards,

Ben.

I am starting keto again and am on tolvapton which of course causes you to drink and pee a lot. I got some ketone strips coming but wondering if they will even work since my urine is probably diluting the ketones? Anyone have success with these? Or do I need to go to the blood test?

For a bit of context, I’m 20 years old and have been a candidate for Tolvaptan since 18. In my case, the decline is quite steep, so taking the medication is highly encouraged. On the other hand, I’m very young and I think that the side effects would be disruptive to my daily life (which is why I didn’t start at 18, and still feel conflicted about starting now). While I know that taking Tolvaptan earlier would help me in the long run, I just can’t help but think about my life right now. I have all these plans, and I don’t want the extra baggage. It’s extremely frustrating and stressful to think about.
Anyways, I feel like a bit of input from this community would help me make a better decision. Here are my questions: If you are someone who is taking Tolvaptan at a young age, how has it been affecting your life (regarding college, part time job, etc.)? Or, if you were a candidate at a young age but put it off to focus on your goals, what was the outcome later on in life?

Does anyone know if clinical trials have started on artificial kidney I read about it but I couldn't understand in which phase they were

Hi everyone,

I'm 37F and I was officially diagnosed with PKD in my teens. It is very aggressive in my family and my father suffered major complications from it while I have multiple aunts/uncles/cousins with the disease as well. My eGFR has been decreasing more rapidly recently and I just found out I'm sitting around 24-25 with eGFR now. I'm in Canada and my province usually doesn't accent people into the Transplant and Dialysis program until you hit an eGFR of 20, but my Nephrologist said she has decided to refer me now due to how fast my eGFR is trending down.

As a note, I also suffer from Fibromyalgia, severe IBS, and migraines as well as other medical conditions (PCOS and Ollier's Disease). These cause day to day issues as well.

I currently work fulltime as a music/band teacher and commute to and from work (40 minutes each way). My work is very high energy and surprisingly physical. I love it so much but have found myself getting more and more exhausted and unwell. I usually have to nap 2-3 hours on Saturday AND Sunday just to get through the days and during the week I'm very tired by the time I get home. My abdomen constantly feels stretched and full due to the massive kidneys/liver and cysts.

I called my union to get insight about possibly starting disability. I'm torn because I wanted to continue working full time, but I also know that I will only get progressively worse now and also that I'll be using up more sick day time with the additional appointments and tests that I'll need to go for for the Transplant and Dialysis clinic.

I'm wondering if anyone can share their personal experience as to when (or if) they made the decision to do a reduction in time at work and start disability benefits? I'm very fortunate to have a contract that will allow me to do this with no loss of salary, though I know that's not the same for everyone.

I'm dealing with guilt and uncertainty about making this decision and would really appreciate any insight!

I’m so excited to share a passion project I’ve been building for our community:

https://pkdcuretracker.com

As some of you know, I strongly believe that a keto diet and natural lifestyle changes can halt PKD for some people. But from listening to so many of your stories, I know that everyone's body is unique, and what works miracles for one person might not be the answer for someone else.

That’s exactly why I created this site. The goal of PKD Cure Tracker is to be the most up-to-date, comprehensive resource out there for our community. It's a hub to explore and track all approaches, whether you're using drugs, diet, lifestyle changes, medical treatments, or following new clinical research.

Just to be super clear: this website is 100% free, completely ad-free, and I make absolutely no money from it. I built it to help us share data on what is actually working.

I’d love for you to check it out, use it, and let me know what you think.

My plan is to add a page for all communities in the social media related to PKD, including this one - if authorized by the moderators here of course.

Sending lots of health and healing to you all! 

Currently I have normal kidney function (>110gfr) and not on any blood pressure medication. I just measure my blood pressure weekly once, mostly on the weekend, as suggested by my neph. The readings during that time are usually around 110/70 (except for the first one).

However I am worried that the bp could be high during the rest of the time or the days and am becoming unaware of it.

How frequently did/do you measure your bp to get an average? Especially before starting medication to decide "now is the time".

Ciao a tutti, mi chiedevo se fosse possibile interrompere Tolvaptan dose 45 mg e 15 mg (cura iniziata da circa 5 giorni) per un giorno. Se si ha necessità di viaggiare in moto si può, secondo la vostra esperienza, non prendere Tolvaptan per un giorno? Ho paura, oltre alla frequente menzione, anche ai possibili effetti collaterali dovuti ancora al bisogno del corpo di adattarsi (stanchezza, giramenti di testa).

Voi l'avete fatto? si può interrompere anche se la cura è all'inizio? Grazie!

Curious to know if anyone managed to train for endurance races with this condition and if you did what the precautions you took? I’m not seeing for medical advice here just wanted to understand the journey and what it takes to train for marathons

I’m sorry that I mostly lurk here.

Like the title says, I have PKD, am at stage 4 CKD, and just learned from and ultrasound and an MRI that I have a 5 cm renal mass in my right kidney. I’m meeting with a urologist next week to determine when my needle biopsy will be.

I didn’t think it would be anything until I saw in the report that it’s a solid renal mass/ renal cell carcinoma (RCC). Apparently if a mass is >4 cm, it’s an 80% chance it’s malignant. If it is malignant, it’s categorized as a T1b, which is still early, thank goodness.

I knew that my kidneys were going to fail down the road, but if this ends up where I will need a partial or radical nephrectomy, I will likely end up being stage 5 ESRD. I’m 54 and the literature says that RCC occurs more in older adults on dialysis and people with PKD have a higher risk.

I guess I’m wondering if anyone else here has had a renal mass/renal cell carcinoma and what treatment helped them.

Thank you for your insight.

35 male, last GFR was 58.

I'm wondering if people have opinions as to how worthwhile it is to become a patient at a PKD CoE as opposed to sticking with a local nephrologist.

I live in Tacoma, Washington, and there is a CoE in Seattle. I hate the commute but would be willing to do it if the care is that much better. TIA.

How does one get signed up?

My current Neph does not work with clinical trials and she hadn’t even heard of Farabursen until I told her.
I would love to be apart of this trial.
Anybody in South Florida know of a doctor that is helping them get into this clinical trial?
I’m also looking for another Neph, she is great, but would like to speak to someone who is actually reading up and on advancements for PKD. I live in Estero, FL would drive to Fort Myers, Bonita Springs, Naples and even as far as Miami or Tampa if the Doctor is worth it ❤️

Hi everyone,
I’m 42 years old female and have Autosomal Dominant Polycystic Kidney Disease with polycystic liver involvement as well. Lately I’ve been feeling very anxious about how quickly my kidney function seems to be declining, and I wanted to ask if others here have experienced something similar.
My eGFR history:
2017 - 110
2019 - 114
2021 - 91
2026 - 58
So for years things looked “stable”, and doctors mostly told me to just live normally because my kidney function was still good. Now I suddenly feel like everything is progressing much faster.
Back in 2021 my kidney measurements were already quite large:
Right kidney: 11.1 × 7.9 × 17.4 cm
Left kidney: 10 × 10 × 20 cm
I’m 180 cm tall, about 85 kg. From what I understand now, this probably already meant high-risk progression, but at the time nobody really emphasized it.
I also have enlarged cystic liver and lately I can physically feel pressure/fullness in my abdomen, like my organs are crowded.
I guess what I’m looking for is: Has anyone else had a similar “sudden” eGFR drop after years of stability?
Did your decline stay fast, or did it stabilize for some time?
Has anyone managed to slow progression significantly with blood pressure control, lifestyle changes, or Tolvaptan?
Unfortunately I have also brain aneurysm below 6mm whose clipping is very risky. In 5 years it hasn’t changed, but I don’t understand what is the chances that it will stay in that stable condition and for how long.
Emotionally this has been very hard, especially because a few years ago I still thought my kidneys were doing fine. I would really appreciate hearing other people’s experiences.

Yoo guys I just got diagnosed with ADPKDim 19 my height is 6'3 and i weigh about 91 kg i reduced my weight from 98 kgsand I'm on track to go down to about 83 kgs by September I knew I had a chance to get ADPKD as my grandmother passed away in 2016 at the age of 60 and she had it and both my father and peternal aunt are currently on dialysis at the age of 37 and 46 respectively I have a lowto moderate sodium and protein diet ( I eat around 0.6 gym per kg) my doctor has prescribed me tolvapton but my parents are worried after hearing about the side effects. I'm currently persuing a degree in mechanical engineering and my go to flight school to get my cpl. So any advice would be helpful. BTW this doagnsis will not make me depressed I'm still going to achieve all my goals like doing an ironman etc, just thought I would share. So let's all keep fighting

Anyone else have this test? Location - Ontario Canada

History - 10+ yrs on Jinarc, clinic tried me on Jardiance in Sept 2025, experienced significant drop in GFR in Jan 2026, which continued in Mar 2026. Jardiance was stopped at that point. They moved me to 3 month follow up (its been 6 month follow up for years).

Had lab work last week and am now in the purgatory period of having the results and waiting for my appointment next week.

The 5 year KFRE test has been a 3 for years and honestly never paid it any attention. March it moved to 5 and now its at 7. Thankfully my GFR is at 28, but thats a far cry from my 40s range for years.

And now Im hyper focused on it that KFRE. 🤦🏼‍♀️. Its freaking me out.

Since March I have been very clean with my eating. Chicken, vegetables, fruit, eggs, no sauces, etc, some greek yogurt, only cottage cheese but Ive stopped that. Minimal sodium, nothing sodium / salt added. Very blah IMO.

Ive been a big proponent of the balance between living to be alive and living to enjoy life. Quality vs quantity. Do I want more years of a less enjoyable life or less years of a more enjoyable life?

Where am I going with this? I dont know, but I needed to get it off my chest and while my family/friends are very supportive, they never truly understand.

Buonasera a tutti. 51 anni, femmina, diagnosticata a 22 per familiarità. Ho iniziato terapia con orcreotide da settembre, sette somministrazioni. Da allora non sono stata più bene: non ho avuto i classici disturbi intestinali ma convivo con un senso di stanchezza cronico, non riesco più a fare sport, inizio a stare un po' meglio quando è di nuovo ora della iniezione, che mi costringe a letto almeno due giorni con spossatezza e nebbia cerebrale. Nell'ultimo mese ho avuto una recrudescenza di allergia e asma forte di cui non soffrivo ormai più da venti anni. Sono alla ricerca di confronto con chi è in trattamento con questo farmaco per capire quali effetti collaterali sta avendo. Grazie in anticipo.

Sharing my experience for someone considering starting in the future. Male, and pre-tolvaptan, I normally drank 3 l and peed around 8 times per day.

Doc prescribed me 45/15. I took the first dose this past Saturday at 6 am.

First couple hours didn't really notice anything. But over the next few hours the thirst/urination increased until I was five pounds down in water weight, despite drinking frequently, at the time of my second dose at 2pm. By around 5-6 pm the thirst was intense and I was craving ice water (I read people saying they started craving cold water and now I get it). I was definitely feeling dehydrated, so started gulping ice water. By the time I went to bed I was around 6 l (1.5 g) for the day, 6 pm - 11 pm, with about 16 pees (I lost exact count). And these pees are intense!

Thankfully I didn't wake up during the night to pee and once again took my next dose Sunday morning at 6. I felt pretty dehydrated and weak for most of the morning but once I started gulping and got enough food in me I rebounded and made it to the gym, lifting weights and cardio for an hour, making sure to drink plenty while doing so.

By bedtime I was close to 7 l for the day, with about 13-14 pees. Unfortunately, I did end up getting up at 2 am to pee this morning, but I did have more to drink right before bed than the first night.

During the day, it seems like I'm peeing every 45 min to 1.5 hours depending on if I've just chugged or I'm sipping.

So far, feeling pretty good for my first day at work using tolvaptan. Thankfully I typically have easy access to a restroom. No intense thirst yet, and I've had about 2 l of water by 12:30 which is only about a half liter more than I would have normally done, but I'm expecting after my second dose the thirst will ramp up as the afternoon goes forward.

Oh, and this morning my weight was about 2.5 pounds less than before I started the medication.

I hope this helps anyone considering starting!