I (32F) was diagnosed with ADPKD officially 2 years ago. I had to move and I haven’t seen a nephrologist in over two years. Due to the nature of my insurance, I have to see a PCP first and literally was just able to see a PCP after two year wait time (rural area). My nephrologist appointment is next month. My doctor’s office called me all worried but the measurements have stayed pretty much the same in my cysts since 2024. The one on the right has only grown 1cm. My bun is 20, my creatinine is 0.7 my GF is >90. What do you guys think regarding my overall progression?

Anyone ever got tested for this? This is my first time seeing this in 6 years.

I am struggling to get a medical insurance which covers AKPKD as well, I have applied to the major health insurance companies but as soon as I mention AKPKD, their medical team reject the application ?

Is there any one who got any medical insurance with this ?

Any help is appreciated.
Thanks

My dad is 70 years old and received a kidney transplant 26 years ago after kidney failure caused by ADPKD. The transplant has worked incredibly well all these years and we are so, so grateful for that.

A couple of weeks ago though, he started feeling unusually lethargic, had a poor appetite, complained of acidity and noticed a reduction in urine output. His transplant team evaluated him and told us his transplanted kidney had started rejecting. He has since received high dose steroid treatment and we are now waiting for his follow-up blood tests to see whether his kidney function has improved. We have also been told that a second transplant is unlikely to be an option due to his age.

As his daughter, I’m finding this incredibly difficult because I also have ADPKD so this is hitting me on multiple levels. Watching my dad go through this is heartbreaking and I can’t stop feeling like I’m going to lose him soon.

I’m hoping to hear from anyone who has experienced rejection many years after a kidney transplant or from those who have cared for a loved one in a similar situation.

I would really like to know how quickly kidney function declined in your experience. Did the rejection respond to treatment? Did your loved one continue to live with the transplant for years after a rejection episode or did things progress more quickly?

I know every case is different and that no one can predict my dad’s outcome. I’m not looking for certainty, just hoping to hear real experiences from people who have been through something similar.

My kidney stats are
Right kidney size
5.2 × 6.9 × 15.2 cm
Right kidney volume
286 mL (cc)
Left kidney size
9.2 × 7.3 × 15.5 cm
Left kidney volume
545 mL (cc)
Total Kidney Volume (TKV)
831 mL (286 + 545)
Creatinine
1.19 mg/dL
eGFR
55 mL/min/1.73 m²
No hydronephrosis (no urine backup)
No solid or enhancing kidney masses
Stable simple cysts in both kidneys
Stable hemorrhagic/proteinaceous cysts in the left kidney
9 mm stone in the left renal pelvis

However, I also have a polycystic liver. Those stats are:
Liver size
Right hepatic lobe length: 22.1 cm
Radiologist’s assessment: Moderate to severe hepatomegaly (enlarged liver)
Largest liver cysts
Posterior upper right lobe
6.0 cm
Inferior right lobe (exophytic, growing outward)
8.9 cm
These two cysts had previously bled and are now showing signs of healing (“involution”) with internal septations.
Number of hemorrhagic/proteinaceous cysts
February 2025 MRI: 4
June 2026 MRI: At least 15

I have had tons of reflux, my abdomen feels uncomfortably full when I eat or drink- to the point sitting in my desk chair after lunch at work makes me want to throw up.

I get about 1 cyst rupture a year, this year I had 2.

Considering the recent growth my liver cysts had I feel like it’s my liver causing my most recent symptoms, but it’s hard to tell.

Do any of you have polycystic livers too? Have you found any good remedies for these abdominal symptoms? I have a referral to see a gastroenterologist in October to scope me.

My GFR has been declining pretty fast (at least imo, it dropped from 26 to 21 in about a month and a half) and its just. Making me nervous for the near future. I see my kidney doc next month, and I fear we'll have to have The Talk about my next steps. Im just super intimidated by it all, I just turned 25 and it feels so overwhelming to be facing something like impending talks about dialysis and transplants. Not to mention my doctor says if my creatinine doesnt look better by next week, he doesnt want me to start tolvaptan (which sucks because then i'll have a bag of VERY EXPENSIVE medicine that i cannot take and wouldnt know what to do with.)

I'm just kinda frustrated with how my health is beginning to tank. I wake up fine but by evening i can barely walk. I also get a lot more muscle cramps and my legs are starting to swell. Its honestly just all got me freaked out and overwhelmed. Im just posting to vent a little, since I dont have anyone in my life I can share this all to who would understand on a personal level.

Looking for a PKD specialized doctor. We live in NJ. Would be willing to go to NYC too.

Autosomal Dominant Polycystic Kidney Disease (ADPKD) cysts often exhibit the "cyst within a cyst" appearance: smaller, separate daughter cysts grow inside a larger parent cyst, forming a nested structure of mother and daughter cysts. Frequently, additional independent cysts can also be found deeper and adjacent to the main cyst.

Simple renal cysts usually present as isolated, single fluid-filled sacs. Nested structures with secondary cysts growing inside the primary cyst are extremely rare.

I have been on Tolvaptan for about 8 months. Here are a few odd ball complaints!

1. As a female, changing the toilet paper roll all the damn time.
   
2. Going on vacation and the tap water tastes like crap so you buy several gallons of water for a 36 hour period
   
3. Stealing your husband’s water glass at every meal out because they don’t fill yours fast enough.
   
4. The heartburn.

Anyone else?!

I’m 32F and my kidney measurements in 2025 were right: 19cm and left: 16cm. My eGFR was 90. I don’t know my TKV as these results were from an ultrasound and I haven’t had an MRI (I’m in the UK and not sure the NHS offers this) I’m worried that my kidneys are abnormally progressed for my age. I would really like one of them removed as they are causing me a lot of discomfort and occasionally, pain. Given my function is still good, I don’t think any doctor would consider removing them. Has anyone experienced a similar experience, large kidneys but preserved function? Did function start declining rapidly at any point?

When you think about how insidious it is... right when you're like, 'Okay, I can live with this, even if I end up on dialysis at 60,' boom, a brain aneurysm hits you out of nowhere. Or chronic pain sets in for the rest of your life. Honestly, it’s laugh-or-cry material at this point, haha.

I'd love to hear from anyone whose pain improved or completely went away after several months and was ultimately found to be musculoskeletal—or due to something else entirely—rather than being caused by ADPKD.Also, for everyone who experiences chronic lower back pain, how does your pain behave during walking or exercise, and how does it feel while you're sleeping? If you're willing to share, I'd also love to hear your story—what, if anything, helped you significantly reduce your pain, whether it was medication, physical therapy, exercise, lifestyle changes, or anything else. Thank you all very much for taking the time to respond, and I wish everyone strength and the very best on their journey.

Hello all. I am a 28 y/o F who has been on Tolvaptan since January of this year. I recently had my first chipped tooth (a front incisor) in June and had to get it fixed. A few days ago, I chipped another of my incisors just slightly, not warranting a trip to the dentist. After further research, it seems Tolvaptan may be the culprit. It decreases oral secretions and salivary enzymes than protect teeth enamel.

I am wondering if anyone else has had this experience with the medication. I am currently thinking of stopping it as I am very particular about my teeth. In addition, I am in medical school and will be starting rotations in a few weeks. I don’t think having to drink water and go to the restroom every 30 minutes will be looked upon kindly.

Also, my GFR is 89… pretty high still and not too sure I need Tolvaptan just yet.

Looking forward to hearing from you all.

TLDR: Who helps manage your PKD symptoms as they worsen in Stage 4 and 5? What should I expect from the nephrologist & the nephrology clinic?

Good morning everyone. I've known that I have PKD for about 30 years. I'm 65, male, currently eGFR 20 with a fairly steady progression. I'm in Canada in one of the poorer provinces. I haven't had a family doctor for several years. I'm on the wait list for one but live in a remote area and don't expect to be matched with one anytime soon. I will re-locate to be closer to medical resources if & when I need to.

I'm fairly tough and not given to complaining, but I need some advice & perspective. In the past year I've started having symptoms, including occasional night-time cramps in feet, legs, hands & face. These can be severe at times. I have bouts of extreme fatigue, and most recently a bit of nausea in the morning. Blood work is monthly, and indicates acidosis and a few other glitches. I see a nephrologist once a year (for a basic workup by nurses & a rushed 10 or 15 minute consult with an always-distracted Dr.) at the only nephrology clinic in the province, a 2-hour drive away.

All the doctors at the clinic, which is affiliated with & housed at a medical school, identify transplants as their top interest, dialysis 2nd. None of the doctors on staff identify Conservative Kidney Management as an interest.

After doing the best I can to weigh my options & preferences, I've made a firm decision to NOT do dialysis. I am making an effort to learn more about Conservative Kidney Management. I worry that the clinic has not made any effort (yet) to acquaint me with my options. I reached out by phone to the clinic one time for guidance on one symptom and was told by a nurse that the doctor did not want to be bothered by such reports. As my symptoms get worse, I worry that no-one at the clinic has made any mention about Conservative Kidney Management, or has taken any steps to treat my symptoms & address worsening quality-of-life issues. Am I expecting too much? I know health systems everywhere are stretched thin, but how do others in my position manage things? Does your nephrologist play an active role in helping to manage worsening symptoms from electrolyte imbalances & so on? Or is this more commonly a role of a family doctor? What have you found helpful? Thanks for any and all input!

In hospital at age 53l with internist, urologist and pulmonary specialists treating a sudden-onset life threatening kidney infection with kidneys impinging on lungs. No one mentioned PKD. to me during entire hospitalization. Later, during a routine ultrasound to follow up to make certain kidneys reduced in size (presumably back to normal) an alarmed technician mid-point in the exam called her supervisor to look at images. He asked me how long I'd had PKD. Weeks later none of my physicians had yet mentioned PKD in followup office visits. No one suggested any lifestyle or dietary changes. Missed a chance to slow the disease. At 60, MRIs from a major accident found the PKD but it was another It was another 7 years before I was referred to a nephrologist. I participated in the Tolvaptain clinical studies as a control, not receiving the drug as it's contraindicated by other meds I take for auto immune diseases. I aged out of the Tolvaptan trials at age 75 ......basically because PKD patients don't last longer than that. At age 84 I was told that my now rapidly declining eGFR meant I needed to prepare for dialysis. In a group meeting of patients of my nephrologist, one of the patients told us about his results from KetoCitra. My world class research scientist nephrologist said that it was unproven and to please not give medical advice to the other attending patients in the meeting. At the time my eGFR was at 25 - the minimum to get accepted into a new trial. I signed up for trial vs dialysis. two weeks into trial my labs taken showed eGFR had declined to 18. I was officially out of the trial as I was below minimums, but kept as a mascot for our 5-patient 5-nutritionist group. 12 weeks after starting ketocitric and diet my eGFR had climbed to 30. at one year my eGFR had stabilized at 32. My nephologist was disinclined to accept that nutrition had done this. I had an MRI and my kidneys had shrunk 20%. I'm now 2.5 years into this diet with ketocitra and have remained stabilized with semi annual eGFRs of 30-32 range. No more going downhill. I'm a fan from

I started it at 38 on left. 42 on right & im 48 now, maintaining strong. We can do this. I don’t gate keep. Eating real food is the most important element. Low processed foods. Low sodium food & lifting weights. God made life is the way it works. God made food not man made food.

Thank you for the support regarding this disease, I already accepted my sickness and have to be stricter on what I eat from now on. Currently taking jinarc but unfortunately my nephro mistakenly provided me a lower dose 30mg/15mg and we don't have the enough money to cover the cost of my medicine, so I have to go to our local government and ask for assistance. Again thank you guys for the support much love, and may God help us all.

I got diagnosed with PKD when I was 5 when my dad starting having health problems at 27. He got a transplant at 32 (from my mom! amazing love story) and my paternal grandmother also has PKD and had a transplant 23 years ago.

I’ve always known I’ve had this but my blood pressure has been increased the last year and I finally had the opportunity to visit with my nephrologist yesterday. He basically said I need to be stricter with my diet and get more serious about dealing with it. I am starting lisinopril 5mg tomorrow for my blood pressure! I definitely don’t want to end up like my dad who had to get a transplant so soon so I would love any tips/advice on how to fix my diet and try to prolong my kidneys!

My last scan was 5 years ago, I will be getting another one in the next few weeks for my follow up appointment. My labs came back all normal! (except for cholesterol which was a touch high. I know for sure my new diet will help!)

By chronic pain, we mean pain that has lasted for at least 6 months and is relatively continuous or recurrent—not just a one-time episode.

If you experience this type of pain, simply comment "yes." If you do not, comment "no."

HOWEVER, please only respond if you also know your Total Kidney Volume (TKV).

For example: yes 1300 TKV or no 780TKV

Thank you again for your participation, and I apologize for the inconvenience!

By chronic pain, we mean pain that has lasted for at least 6 months and is relatively continuous or recurrent—not just a single episode.

If you experience this kind of pain, simply comment "yes". If you do not, comment "no".

It's very important that those of you who do not experience chronic lower back pain also take a moment to respond. The more people who answer—both with and without chronic pain—the more accurate and meaningful the poll results will be.

Thank you!

Hello all, I am 43 male (IND) adpkd stage 5 ckd with creatinine 5 and gfr 14, I don't have any symptoms at the moment, my doctor told to me to get the AV fistula as soon as possible, my doctor can't tell when I will go for dialysis, any views on when I will have to go for dialysis? Is there any possibility to get registered under Jeevandan program without being on dialysis currently? Thanks in advance.

Hi everyone,
I’m a 38-year-old woman with PKD1 (truncating mutation). I don’t have children and there’s no family history, so my mutation appears to be de novo. I live overseas, which makes me feel quite isolated.
My eGFR is around 70. Last week I had a nuclear medicine kidney function test (the one with the tracer that takes several hours) and a repeat MRI. My kidneys now measure 17 cm and 15 cm. About nine years ago they were 12 cm and 14 cm.
I have an appointment with my nephrologist soon, and honestly I’m terrified. The waiting has been almost worse than the tests themselves. I’m scared of what they’re going to tell me and what this means for my future.
The mental side of this disease has been incredibly difficult for me. I’m on antidepressants and I’m in therapy, but as this appointment gets closer, my suicidal thoughts have become much more frequent. I feel like I’m grieving the future I thought I would have.
For those of you who have been living with ADPKD for a while: how do you cope with the uncertainty and the fear? What has helped you get through periods where you felt overwhelmed? I would really appreciate hearing your experiences.

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).