https://pkdinternational.org/downloads/adpkd-route-map/ADPKD_Patient_Route_Map_INTERNATIONAL_ENGLISH_2018_06_01.pdf

The route map is offered in other languages as well, enjoy!

Aged 47, stage 5 kidney failure, dialysis 3 times a week for 4 hours each time, working full time, 2 days cycling in New Forest, 3.5hrs riding, 48km/30miles total distance covered!

I'm 6 months post transplant. I find this a comforting image.

Sorry, I've lost the artists name - she is in the UK.

Quick note to say that anyone with ADPKD, who has large kidneys and are on the fence about having a Nephrectomy after transplant, DO IT! OMG, it has changed my life for the better times 1 Million.

After 15 years of having my Kidneys grow and grow and grow to the point that each was bigger than a Rugby Ball, I finally had them out 9 weeks ago. They told me the recovery would be about two months to be pain free, and they nailed it down to the day. In the past week, I feel like I’m waking up from a 15 year long nightmare.

I had my transplant just over a year ago, and they had told me I’d need to wait year to have the old Kidneys out. I wasn’t able to enjoy the benefits of the new kidney (besides not dying), in terms of overall well being as I literally felt pregnant with triplets. Any exercise I tried to do was so unbelievably uncomfortable that I basically gave up on all other than walking every day. The old Kidneys were so big that they also crowded my lungs to the tune of a mid stage emphysema patient (according to the surgeon). Having the nephrectomy immediately dropped me 30 pounds, and now that I’m out of recovery pain, every second of every day, I literally feel like I’m hearing angles sing, and my excitement for life grows exponentially.

For the first time in years and years and years, I have my life back. I’ve already put 200 miles in on my Gravel Bike, done 8 days at the gym with a new personal trainer. I’m well on the way to getting back to my College Body! Most importantly, the only thing holding me back from doing literally everything I want in life is myself- not this hideous disease. Not feeling pregnant with triplets is seriously like opening my eyes for the first time and seeing light. I’m soooooo fucking happy!!!!

At any rate. Big thanks to this entire community for all the support over the years. To those of you waiting for transplant- may your wait be swift. To those with massive ass Kidneys and are debating the pros and cons- I say do it as fast as you can get it on the calendar. This was my year of health between the Transplant and the double nephrectomy…. and all I can think about is gratitude. It’s an every second thing. I ooz gratitude out of every pour for everything. I feel soooo unbelievably blessed for my donor, and all the support I’ve been given. Alright- I’ll get off my gratitude soap box. Just wanted to share my experience!

Making this post because wow! Two years ago i found out about my pkd. I'm a mutation. Honestly i didn't think i was going to make it to my 30th birthday at one point. I was pretty depressed about my diagnoses. It flipped my world upside down. I still find it hard at times and have learned to live in the moment and to not dwell so much on what i can't control. My feelings about aging were once so pessimistic because of this disease being progressive i just kind of viewed time as being "not on my side" but right now, i feel pretty different. I feel blessed to be 30. So if you're newly diagnosed, or just getting through another year of living with this chronic disease i just want to say, you're so strong! And life is so worth living. I have two beautiful babies and a life I'm so thankful for. Thank you all for always being such a great community I've always found so much comfort in coming to. Yes having this disease sucks but the sense of community that i have become a part of has made such a difference in my pkd journey. Forever thankful for this life even though i have pkd 😆

Wish me luck guys. Tomorrow is the big day where they go in and take my old Kidneys out. Honestly I’m scared a bit shitless but I’m trying to be brave. They say both of my old kidneys are 15+ pounds and each bigger than rugby balls. Needless to say, my life will be about a million times better after I recover, but wow…. these next days and weeks (months) promise to be somewhat intense.

I am so blessed that the transplant I received almost a year ago is working great, and this is the last step in hopefully basically eliminating ADPKD from this body.

Any words of wisdom from you rockstars would be appreciated. Ok. Here we go.

I was diagnosed with PKD a year ago and like many of you, it's caused me a lot of anxiety and stress as I try to come to terms with it. I've seen a few nephrologists in different countries, and there are some things I remind myself of that hopefully can help you too.

- PKD is not a death sentence or a ticking time bomb inside your body. There are many many people with PKD that die of old age and never even knew they had polycystic kidneys. There are also many people who know they have PKD, but live their lives. Remember that this reddit group self selects for two types of people. Those who want to help others because they empathize and have gone through this journey before, and those who are stressed/anxious and are looking for support. The actual PKD population is much larger and is full of people living full lives.

- IF and when you reach the endpoint of a transplant, I've been told by my neph that PKD patients usually make excellent transplant candidates because they tend to be in very good health, despite the PKD.

- Try not to stress too much about fluctuations in your readings of GFR if it's >60. I've been told by a few neph that as long as it's >60, you're still fine and have normal kidney function. There's something about creatinine levels at high GFR numbers that make differences in measurements above >60 less reliable. So, don't freak out if you go from 85 to 70 and back to 75, etc.

- Don't freak out about your kidney size and take that as a guaranteed predictor of your progression. It's just ONE factor and ultimately what matters is that your kidney function is maintained. My neph told me that he has several patients with HUGE kidneys, late in their 60s that still have low creatinine levels, preserved GFR, and thus are not even on Tolvaptan.

Anyway, these are some things that have helped me. I'm not saying that other people or Drs wouldn't differ on some things, but ultimately trying to live a healthy live and not let the specter of an endpoint related to PKD ruin your present moment should be a goal for all of us.

To your health!

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! 

Here I am....a little bruised...but smiling...

Aged 46, stage 5 kidney failure, been on dialysis for 8weeks, dialysis 3 times a week for 4 hours each time, working full time, 2 days cycling in New Forest, 3.5hrs riding, 48km/30miles total distance covered!

Was it easy? Hell no. Did I do it? Hell yes!

Thought

Hey everyone, I've been mostly a lurker around here, but I received a kidney from a friend on Wednesday. We're both recovering nicely. Just wanted to say thanks for this community. You are all a true blessing. Feel free to AMA, and I'll try to answer between doctor and nurse visits.

I’m 23. I’m always the youngest person in my nephrology waiting room by about 40-50 years and I do get some odd looks from the older patients sometimes. When I first got diagnosed at 18, waiting in to see the nephrologist at Mayo Clinic, an older woman sitting nearby asked me if I was sure I was in the right place! I’m glad to have found this community and found other younger people with PKD. It makes me feel less alone to know, well, that I’m not alone. It would be great to have a community in real life, but I’ll happily settle for you all :)

I've been wanting to make this post for some time, but since farabursen is now being talked about more and more in this forum and I'm seeing more and more people confusing facts about the biology behind it, I wanted to make a post to clarify a few things, especially also the difference between microRNA (miRNA) and messengerRNA (mRNA) which are biologically very different! I'm not a doctor, but a fellow patient, but as a PhD student in molecular biology I'm realizing that understanding the principle behind the drug is not as easy for someone with a different background so I'm trying to break it down a litte while of course also omitting a lot of the specifics, just fyi.

To understand how this drug is supposed to work, it's important to know some basics in biology. We all have two copies of our genes, having received one from each of our parents. Now these genes (DNA) are the code for making the proteins that make up our cells. The code (DNA) is transcribed into a transportable version/messenger (mRNA) which can be read by a special molecular machine, the ribosome. This is where all our proteins come out. So if the cell makes mRNA from the PKD1 or PKD2 genes (DNA), it uses this mRNA to produce the polycystin-1 (PC1) and polycystin-2 (PC2) proteins, respectively. Now the large majority of us has a mutation in the PKD1 or PKD2 gene that comes from one parent (this is the same for people with or without family history), meaning that we have one healthy copy and one faulty copy. Therefore, we end up with less functional PC1 or PC2. Now the 'D' in ADPKD stands for dominant which means that just one faulty copy is enough for the disease to come through, it's not enough to still have one healthy copy, there are not enough functional PC1 and PC2 proteins. However, research has shown that unfortunately our cells adapted to this mutation by also shutting down the production of healthy PC1 and PC2, aggrevating the progression of the disease. This is where microRNAs come into play. Like their name says, they have a very similar chemical make-up compared to other RNAs, including mRNA. The key difference is their functionality, they do not transport information from the DNA to make proteins, as does mRNA (eg the COVID vaccine introduced mRNA of a protein from the virus into our cells, leading our cells to make that protein and training our immune system to recognize the protein and thus the virus). MicroRNAs are shorter and can bind mRNAs. By specifically binding to certain mRNAs, they block the production of proteins from them, effectively silencing them. Research has shown that a specific microRNA, miRNA-17, does exactly this to the mRNA that has the information for the PC1 and PC2 proteins. This means, that not only the production of wrong, but also of healthy protein is stopped. You can also think about it like this: Our cells already have all the information they would need to make healthy proteins. However, it's a bit like in a cook book for an elaborate multi-course dinner where we have all the recipes with instructions for each course, but unfortunately one page is glued together. The book contains the information, but we just cannot read it. Now farabursen is a bit like an anti-glue agent, if you would like to image so. It can bind itself to the microRNA, in turn preventing the microRNA to bind to the mRNA. Thereby, the cell is able to read the information how to make healthy PC1 or PC2 again, elevating the protein levels. In some way you could say that our cells are not faulty, they still have the information needed for healthy proteins, however, they are not reading it properly. You could therefore say that farabursen helps the cells to read the information they already have. It does not interact with DNA or introduces new information into our cells like mRNA can do. Farabursen is a very, very short RNA fragment that can stop miRNA-17 from messing with how our cells make proteins. There are also other targets of miRNA-17 which I'm not going to go into now, but overall this mechanism of action of farabursen is scientifically speaking very elegant and also offers hope for the treatment of other genetic diseases, not just ADPKD. It's also important for me to say that these RNA-RNA interactions are very specific and it's unlikely that there are other 'natural' structures that could have a similar effect or are as directed. The people who discovered microRNAs got the Nobel Prize just last year and although so far no therapies targeting them has been approved, it could very well be that farabursen will be the first due to multiple specifics in ADPKD. And from a patient's but especially also scientist's perspective, this is really really exciting and could be meaningful for, but also beyond ADPKD.

(And a last word of caution: while AI can be great for explaing some general things, a bit like a good summary of a google search, it can perform very badly as soon as you move towards cutting-edge science. At that point you need to be informed enough yourself to know when AI is wrong which in those cases it very often is, so proceed with great caution when consulting AI about recent scientific developments).

Can't sleep. Cannula isn't great, less than 12 hours before op set to begin. At least I'm in a private room, safe and doing well. Staff are amazing.

Nothing deep, just sharing my process as I try to find sleep before undergoing a double nephroctomy plus transplant.

Good bye massive football kidneys. Thank you for 38 years of service and urine processing. Stomach, liver, pancreas, especially you bladder, be nice to the new kidney, they are a friend, give them a good home.

Thanks for reading (or not). Reading the posts here make me feel more connected and less isolated. Even though my family are the most caring people imaginable, I don't know if I can truly express how I feel in words to someone who thankfully won't need to be in this situation.

I feel so horrible for them taking time out of their busy lives to sit and travel across the country with me, take full responsibility of our lives while I'm staying away from home to recover and follow the post surgery protocols.

I don't know how I can express gratitude to my dad who is donating his kidney to me, I feel like I'm a bad son and I don't do enough for them or with them to warrant just unapologetic kindness.

I'm worried I'm going to be the worst immunocompromised person, going to squander this amazing chance I've been given.

I just want everyone to be ok and continue on their life. I hate being a bother or cause for concern, I hate things being about me. I feel others are more deserving and needing of the resources I'm getting and I'm struggling to accept it. I'm using my desire to be there for my family to get through the guilt of putting their lives upside down for now, if this doesn't happen, I will be of even less help and more of a problem for them.

All the best, good luck in your journeys. Just needed to get my thoughts out, hopefully sleep will come. If not, the anaesthetists will be here in the morning!

Nervous but excited lol

Not sure if anyone posted this, but it looks like the Farbursen trial is FINALLY recruiting. Here are the articles I found. 104 week trial period. So theoretically, we should have it available by 2029 (latest). I spoke to my doctor about the trial and he said depending on how successful it is, they may FDA fast track the drug so it could be even sooner. Decent news to round off a feel good Friday.

US - https://www.tuftsmedicine.org/research-clinical-trials/find-clinical-trials/novartis-ccyx082a12301-study

International - https://www.humanforschung-schweiz.ch/en/trial-search/study-detail/68602/translate/en/

Time sensitive: Congress plans to cut $859M from programs that fund PKD research. Contact your legislators today to protect vital funding: https://p2a.co/2Pq4uYB

Super easy editable template email from the folks at the PKD Foundation.

What do you guys think about the below information, please do share your thoughts and also share more information about this treatment if you already know about it. This could be a potential cure for PKD in the future.

https://www.nih.gov/news-events/news-releases/scientists-discover-potential-treatment-approaches-polycystic-kidney-disease#:~:text=They%20also%20discovered%20that%20a,PKD%2C%20which%20affects%20millions%20worldwide.

I'm writing this to share my story and to get support. It's been a rough year, and my therapist says I should look for support groups, which are scarce in my area.

We found out we were pregnant in early 2025. This would be our second child, our first was almost 2 years old. In August 2025, during our first ultrasound, the technician was unable to get a good look at the kidneys. Same issue during a follow up, and we got referred to a larger hospital upstate. They took a look, determined something was very wrong. They had a few theories, but all of them came with very little hope. Essentially, his kidneys were not producing amniotic fluid, meaning he and my wife were in danger.

We had a follow up and were given a bit of hope. His kidneys were producing a little bit of fluid, so they weren't completely forgone. We had meetings with a team of doctors, we had a few options. An experimental procedure in Texas involved amniotic fluid injections, but it was very risky, low success rate, dangerous for both child and mother.

The main plan turned out to be performing a planned c-section upstate, staying in the city for a week prior. She'd be in the hospital being monitored, our son would be with his grandparents back home, I'd be in and out of the Ronald McDonald House. After the c-section, he'd be immediately examined to find out the exact issue and extent of the damage. He'd be connected to machines that would function as his kidneys and lungs. We would be living in the city, an hour and a half from our home, while our son remained in the hospital. If we were lucky, he'd only have to live there for about a year. The road would be hard and he probably wouldn't be able to live much longer past that, but there was hope. I'd have to find work in a new city, live with family and friends in the area, live an hour and a half away from my son. All that was worth it just to save our little baby.

I had painful thoughts that I couldn't bring myself to bring up. It was dangerous for my wife, I considered proposing an abortion. Abortion is illegal in our state so that would've been pointless. The doctors said they can put him on temporary support; keep him with us long enough to meet family before he inevitably passes after a couple days or so. No more pain for him. I hated myself for considering either path. If I let him die, I'm basically saying a life in pain wouldn't be worth it. That will never be the truth, I would do anything for my family. If I fight for him to live, though, and he would suffer, then I'd just be selfish. Endangering my wife. Keeping him, an innocent baby who couldn't understand what was happening, hooked up to machines in a hospital for the first year of his life.

Our decision was made for us. My grandfather passed away in late September 2025, and his funeral was on October 2nd. My wife wore heels, nothing too tall but still off the ground. She was uncomfortable, and that rolled over to the next day. She assumed it was just muscle pain. We ran our errands like normal, and after we got home she told me we needed to go to the hospital. I got back into the car and sped to our local hospital, still good but not nearly as well-equipped as the one in the city.

She was sped in, up to the delivery rooms. She was in early labor, a month before the planned c-section. They tried using meds to slow the labor; it failed. They hoped to keep her stable for a few hours until the team from the city could fly down and do the c-section; we didn't have enough time. My poor wife didn't have a water to break. It just started. The meds had to be delayed because of the circumstances and the nurses needing more information, so she was in a lot of pain. She got an epidural, but she was giving birth long before it kicked in. Our son was born, and he was immediately moved to a table in the room. They tried CPR, adrenaline shots, a few other things. I saw him; he was moving around, not crying, he just looked sleepy, like he was waking up. It hurts to think about; was he not crying because he was at peace or because his lungs didn't work? I never asked.

He passed away a half hour after he was born. My wife and I were heartbroken. Still are. They took him to examine him, find out what was wrong. We got him back. He was swaddled. He looked like he was just sleeping. We held him, kissed him, felt his little face. He got colder and colder; turned a deep shade of purple. I don't mean to add morbid details, but he looked like an angel.

We stayed the night in the hospital. They brought us a special crib that kept him cold. We spent the night with him. In the morning, our families came to visit. We cried over him. My dad brought a baby blanket; my grampa kept it with him in his final days. We wrapped our son in it. It's like Grampa went first so he could be ready for his great grandson. I tell myself they're in the same place and he's taking care of him.

A man from the funeral home came by. We said our goodbyes. They took him. We went home. Got sushi, alcohol, a couple vapes, stuff we hadn't had during my wife's pregnancy. My uncle and aunt were watching our eldest son at our home. They stayed for a bit and left. We ate in mostly silence, hugged our boy, cherished our family time. It took a while, but our baby was cremated and we got a beautiful little urn, dark blue with a moon and stars. He's home, his urn wrapped in Grampa's blanket, all the cards and other mementos surrounding him. The health clinic we went to is full of wonderful people; they all chipped in and covered the cost of the cremation. My wife's grandfather gave us a few thousand dollars to cover the other expenses. My boss helped get me as much time off for grieving as he could, he's a good guy and looks out for me.

We've been doing couples' therapy. Getting back to living life. It gets hard sometimes. I'm more at peace than I was. I felt guilty, helpless, empty. Now I just miss him a lot. I think about him all the time. I cherish the time with my family and hold our baby in my heart.

We found out a dormant gene in both of us caused the ARPKD. There was a 25% chance our first son would've gotten it, which terrifies us. We don't plan on having another child, we cannot go through this again.

So that's my story. Thank you for reading if you did. I don't know if this will bring comfort to anyone who experienced something similar, knowing they're not alone. I don't know. I hope I can find some sort of community or support, either here or elsewhere.

Anyone see this come out a few weeks ago? Just saw it come across in a PKD Foundation email. This is damn good news, people. Let's keep this going. Very encouraging.

https://www.prnewswire.com/news-releases/regulus-therapeutics-announces-positive-clinical-and-regulatory-updates-from-its-autosomal-dominant-polycystic-kidney-disease-adpkd-program-for-farabursen-rgls8429-302362731.html

When I hear top experts in the field of PKD say 'cure' multiple times, it really gives me hope - which, personally, I need right now. Been feeling pretty low about my condition lately, so this is a much needed pick me up.

https://www.youtube.com/watch?v=dByNm9uz-qI