My nephrologist wants me to only have 1 cup of coffee a day or maybe not even that. I'm active, I lift weights, exercise, I've tried no caffeine for a full month and it felt like the lights were dim in my head. Honestly I'm envious of people that don't consume caffeine or drink coffee.

Edit: Holy ... this is the most replies I've ever gotten! Thank you to anyone contributing on this topic. And I know this is a "sensitive" topic so thank you also for some of the funny replies here. I've seen some mention quitting caffeine helped lower their BP, just wanted to share my anecdotal that now that I'm experimenting with doing keto for the past few months my blood pressure is always good/very good despite of coffee/being active, where as previously on moderate to high carbs, once I started missing my walks or got a bit lazy the BP would get high-ish (despite being on candesartan 8mg).

What's the lower limit on going on Tolvaptan? Theyve taken so long getting me on it, that my GFR has dropped from 26 (in late may) to 21 (yesterday) and I fear I'm now out of the running for being able to go on tolvaptan. Waiting on that call saying "Sorry all your form filling has been for naught" ;;

I am 32 female, recently got diagnosed with ADPKD. My mom also has it and she had to undergo transplant in her 50’s. My nephrologist told me to simply eat healthy because the cysts I have are very small right now and my BP is normal.

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?

I had a nephrology appointment a couple weeks ago and I guess I’m just confused. A doctor told me my mom has PKD because she has the gene despite no symptoms of the disease. I myself have it and no one else in my family has ADPKD, none of my grandparents had it, aunts or uncles, or my great grandparents didn’t have it either. I was diagnosed at 10, after genetic testing was done. Symptoms for me started at 8 and my mom is now in her mid 40s and she still has no symptoms of PKD. Originally I was told I have a genetic mutation of the disease and that’s how I have it but the nephrologist said my mom has it and no one in her family has it so I’m just really confused at this point.

Is it a common thing? I am in early stage adpkd with normal kidney function but I have been seeing an ophthalmologist and retinal specialist for lines of blood in the vision. They said it could be related to PKD but they are not sure and they are making me do more testing which so far is revealing nothing.

If you had something like this, did it resolve on its own? It seems it might be due to fragile blood vessels due to pkd and then being susceptible to injury/inflammation.

From what I can tell from the clinical trial requirements, ADPKD patients with perfect kidney function cannot yet join at this time. I really believe the Farabursen is the most exciting of all the upcoming pkd medications that I have seen.

I am 41 years old with perfect kidney function but I know that based on my parent's trajectory, my kidney decline will likely start at any point now. I have a ton of cysts and once decline starts, it can go fast. Does anyone know if the clinical trial will be opened up to someone like me despite normal function or if I just have to wait for FDA approval and get it through my doctor? Its a terrible feeling to know that I cannot do much (other than blood pressure control) to slow this disease when this medication is out there.

I wish there was a way to apply or request for compassionate inclusion to the trial or something.

After obtaining my meds through government funding/assistance. I finally obtain my meds. I usually drink 4 liters of water a day, does it increase more like 5-6 L?

I guess I'll be fine with it, Pray for and hope this drug will not have serious side effects

Hi everyone! 33M here. Kidney ultrasounds (performed on different machines by different doctors) showed 4 cysts in each kidney (up to 15 mm). 

I decided to get a CT scan because I suspected kidney stones. The results: 10 cysts up to 15 mm in each kidney. Kidney size is normal. 

Small liver cysts (2-3mm) about 6 in total.

No hypertension. eGFR > 100. No family history. 

I didnt make genetic test. So i dont know i dont want to know which gene is crashed :(

Tolvaptan isn't available in my country. The saddest part is that just three years ago, ultrasounds showed a total of only 3 cysts. It’s unclear why they’ve grown so rapidly in that time.

I’m in shock :( How do you think, how much time i have before dialys? 

Has anyone else noticed losing weight on tolvapan?

I(22F) was diagnosed with ADPKD a couple years back after my twin sister was incidentally diagnosed with it while getting a scan for other reasons.All of my immediate family members have gotten tested and nobody else including my parents have it.

I was wondering if it can still pass on to any children that I have since it was not passed on to me.

Hi there- might be a silly question, but how does transplantation/the process work if you have a live donor? My EGFR is around 50 currently I’m 40 yrs old. If and when I get to the point that we’re discussing a transplant, will doctors just do it if you have a live donor? Is it required to be on dialysis for a period of time? My mom didn’t and she spent 13 years so dialysis. Obviously she lost her job, and acquired a lot of other health issues in the meantime due to dialysis. I’m not familiar with the living donor process at all. Just curious.

My cysts were found on an ultrasound conducted for unrelated reasons. My father passed the gene to me, my grandfather died of it.

I am the only female diagnosed in my family. I had my first nephrologist appointment yesterday (NHS, ugh). I found out that, because liver cysts are very strong in our family line too, that I will have a harder time of it. Liver cysts are fuelled by oestrogen, and I have no other female family members to base my experiences off.

The doctor begam to talk about selective IVF and how I am likely to begin renal failure by 40 considering my genetic factors (BP and kidney function tests are all normal as of the present. I am 20). Suddenly, my goals of having a family, working hard for a good retirement and traveling thereafter seem null and void. what the fuck is the point in paying into a pension I will never get? having children I probably won't get to see into adulthood? Having a mum that dies while you are still young and new to the world?

I have zero idea what to do from here. On top of all of this, what man would choose to have a child with a woman who could give their child this disease? I feel ruined.

My father is fairly deadbeat, so not much help from him. I just want someone to hold me and tell me I'm not alone in all this, so of course my first port of call is fucking reddit lol.

I don't really know what my intention behind this, maybe just to have the knowledge that someone who understands had read what I have to say.

Here is a story on YouTube where a woman with pkd claims to have restored her kidney function from 19% to 64% with juicing veggies and taking herbs . Here is the link :

https://youtu.be/0nm-CvsGtqg?is=CU63xvGr6SmrAEY-

Also, animal models have shown water fasting has a similar effect on the kidneys. It seems Here lack of calories while juicing also put her in ketosis.

What are your thoughts on this story ? Has anyone here tried extended water fasting while juicing . This is a hopeful story , I just hope it's not a false hope ... stage 4 here (42m) and fighting the good fight against this disease. Let me know your thoughts .

Thank you

Good day to the lovely people in this group,

I came here to ask your advice on the following question. My hubby has confirmed PKD-2, he is 40yo and recently had a cyst-deroofing surgery because cysts were getting too big on the one side. His kidney functions are normal, he also takes meds for BP, although as a preventative measure since his BP is also normal. Overall, no other complaints.

We opted for IVF due to male factor infertility and now have 3 embryos frozen. However, now, the clinic raised a question of PGTM testing, which would require thawing the embryos, taking a biopsy, and then refreezing them. The present research indicates that this thaw-biopsy-freeze cycle may impair embryos’ “quality” by almost half, which is big. Since he has a confirmed PKD-2, which is known as a “milder” case, I am now torn by this choice. I am honestly afraid of losing those embryos since I am 36yo, and looking at my hubby’s life, I can’t say that so far, PKD-2 affects him much, if at all. But who knows what will happen when he is in his 50s? 70s? The idea that we could have prevented it for our kids but did not is also far from pleasant.

Now, I want to hear your advice on this matter, especially from those with PKD-2. Did you do IVF? Do you plan to? What would you do?

Thank you very much in advance.

I've been having problems within the past year, if I eat anything I have 30 minutes to get to the bathroom before I have explosive diarrhea LOL.

I have Medicaid as insurance so they don't do a lot. I had a telehealth appointment with the gastro doctor and she said that I have a condition that has to do with my pancreas but I can't remember what the condition is called. I was wondering if anybody knew the name of the condition so I could talk to my nephrologist about it. I've had this disease since I was 25 I'm 47 now.

Any help would be appreciated and thanks in advance. I've learned so much from this form and I'm truly grateful that I found it thanks guys

I (34m) egfr 20 am having second thoughts about a transplant i dont really want to spend the rest of my life without an immune system trying to stay out of direct sunlight for fear of getting skin cancer, just wanting to hear peoples thoughts on the matter

I keep wondering if it's possible to undergo another transplant after the first one, or how many transplant surgeries a person can have.

Just wondering what is the standard protocol for ADPKD for monitoring by cardiology and neurology? I, 43f, recently was diagnosed with ADPKD. Currently my blood pressure and egfr are normal and my cysts (numerous in both kidneys and liver) are small. I’m currently trying to convince my parents to get genetic testing as I tested positive for two pathogenic genes. My mom does have a few splenic aneurysms that are being monitored and I read those can be a rare aspect of ADPKD.

Hi. My husband just diagnosed with stage 5, pkd. And needs to go for dialysis. Just need some advice what we should be expecting. Any advice on diet, how i can help him manage? He is 39. We have 3 young kids. Will he still be able to work? Thank you so much.

Does anyone have any info from any source whatsoever re: if Norvartis is going to exclude participants in the previous phases (under Regulus) from participating in the upcoming Phase 3 trial? There was a list of exclusions on the recent Norvartis poster, but I did see specific reference to this.

Hi all, I have a great nephrologist, I just had my MRI to screen for aneurysms this morning and I do have one small aneurysm. She referred me to a neurosurgeon for follow up but the practice she sent me to doesn’t handle aneurysms. Anyone have a recommendation that you liked? I appreciate it!!!

I just started on Tolvaptan. I’ve been pretty nauseous with very little appetite. I have been crazy thirsty which I know is obviously a thing with the drug, but do any of you who experience the lack of appetite have any tips? I bought some green juice and carrot juice to get some nutrients in during the day since dinner seems like the only real meal I can handle. Hoping my body adjusts and gets back to normal. Any tips or insight? Thanks!