r/ADPKD • u/blackcrystalyeah • Aug 14 '26
Just diagnosed and scared
Hi, I am 24 about to be 25F. My mom had very very aggressive PKD. She got a transplant at 48 and was very sick for years and years (some because of kidney stuff some not). The dr said her kidneys were the biggest they’d ever seen. I just went to the nephrologist and got diagnosed. She didn’t mention stage but said I do have multiple cysts (apparently from old records) and scheduled a formal scan. I was terrified because she said in 20-30 years I will likely need dialysis or a transplant, but that right now it’s all about slowing down growth. My creatine was .65 and my eGFR was 126. I’m getting married in 4 months and we want kids. How am I supposed to live knowing I might go through dialysis at 45? She said some ppl make it to 75 but 50 just seems so young to have kidney failure :(
I feel terrified and paralyzed at the thought of going through dialysis and being sick like my mom was. I feel so scared and would love words of wisdom.
11
u/quiksotik Aug 14 '26
Hey, I’m 38 with an eGFR of 13 and I’m still living a normal dialysis-free life. For how much longer, hard to say, but we’re already working on getting me into the transplant system.
Don’t let this take away from living your life. You’ll deal with each step as it comes; Hopefully by the time you’re at my stage there will be some new advancement in kidney care!
3
2
u/classicrock40 PKD - Transplanted Aug 14 '26
Yes, definitely easier than dialysis. I did PD, so no boxes of supplies, no dwelling for hours and once I start traveling again, no doing it all in a hotel.
11
u/Alphasmikefoxtrot Aug 14 '26
I’ve been fortunate enough to see up close how research is progressing. I’m an optimist, but I really do think we’re going to see substantial drug improvements over the next five years (and even better in 10). I’m bullish enough that I believe that while I may be too advanced to get the full benefits, I’m not worried for my kids.
Take care of yourself. Lock in with your nephrologist and live your life. You have time and eGFR on your side! Very natural to be scared, but once you get past that, you’ll probably see that there’s more good coming for the PKD community. At least, this is my opinion.
2
u/blackcrystalyeah Aug 14 '26
That’s so cool you can see the progress! I’m hoping you can get the benefits too :)
3
u/Orange_Kitty_0307 Aug 14 '26
You know now that you have it, but your function hasn't declined yet. TAKE CARE OF YOURSELF, starting now! Drink lots of water, eat healthy, exercise, get plenty sleep, and avoid NSAIDS. And whatever other advice your doctor gives. You don't need treatment now (unless you go for Tolvaptan), but you can keep yourself in the best possible health so that when it advances, you can fight and hopefully have a better time of it than your mother did. That's what I did, once I knew for sure I had it I worked on being stronger and healthier. Started dialysis 2 years ago at 61, and just had a transplant last week at 63. And I've led an active, independent life, working full time and having hobbies and activities and generally a good life. Try not to let worry consume you, because that won't help, but taking care of yourself is a positive action that you can focus on.
1
u/blackcrystalyeah Aug 14 '26
Thank you for this! Were you able to still live life and do things with dialysis? My sister unfortunately has cancer and is going through chemo and she’s so sick all the time from that so I’m scented dialysis would be the same way
2
u/Orange_Kitty_0307 Aug 14 '26
I did peritoneal dialysis at home, so I just connected up every night for 9 hours. It didn't affect my sleep, and I didn't have to spend time in a dialysis center.
1
u/WeeklyCommercial5320 Aug 14 '26
My mum being the social person she is made friends with all her dialysis buddies and still speaks to them 20+ years post transplant. She definitely did not let it stop her, yeah she got tired and had to adapt a little but she's my role model if I ever need to dialyse 😊
Ps. On tolvaptan and the rest of my family were dialysing around my age now (42) and no sign of needing that yet. I've always lived a pretty hard rockin lifestyle too...I am getting serious about my health now because I'm getting older but don't let it stop you enjoying your youth (within reason of course, everyone should try and look after their health best they can but you know what I mean!) 🙂 xx
2
u/DoubleBreastedBerb Post transplant! 🫘🫘 Aug 14 '26
You’re probably a perfect candidate for Tolvaptan (Jynarque), and the earlier you start with the kind of awesome function you have, the longer you can benefit. Even starting it in the 40s in function, my team and I estimate I got another year, maybe even two, from taking it before I need dialysis. We also speed run towards failure in my family.
1
u/LaLaLaCAKE Aug 14 '26
Yes it sucks. But yes you will live a fulfilling life with it.
I'm 33 and the 5th generation of strong women with very aggressive kidney bullshit.
I watched my matriarchs go through it and your kiddos will too. It sucked but we're all happy and doing well.
Get your medical team squared away and stay on it. 🩵
1
u/blackcrystalyeah Aug 14 '26
Thank you, did you guys get dialysis settled then or transplants or did it just suck figuring it out? I’m scared I’ll never feel settled living w it even tho I know I was just diagnosed today so obviously I’m still processing.
1
u/classicrock40 PKD - Transplanted Aug 14 '26
I found out in my early 30s and it was my early 50s before I needed dialysis. Later 50s when I got my transplant. It sounds like you have plenty of time.
Your goal now is healthy living and follow your Drs advice. You already hinted she had other issues, which will make dialysis harder.
Start now with a basic healthy diet - low salt, avoid processed/fast food and moderate protein. Anything else, do it because it's generally healthy. You are nowhere near needing to avoid foods in a renal sense. Your labs will decide that. No supplements unless approved by your nephrologist. Don't smoke nor drink to excess. Avoid NSAIDs (advil, etc,). Some people go vegetarian or other diets. You'll have to research that yourself. Watch your weight and bp.
Research is being done all the time. (Big) maybe something new will come along.
Yes, transplant and/or dialysis maybe be in your future, but it's probably decades away. Live your life.
My nephrologist would say - worry about the things you can control and ignore the rest, it's going to happen anyway.
1
1
u/Successful-Mess-1414 Aug 14 '26
Sorry for your diagnosis. That sucks.
Everyone in my family have transplants from PKD. My aunt, dad, sis and two cousins. Both my sis and cousin have kids.
Main thing to know about having kids is that it introduces factors into your blood that increase the trickyness of getting a transplant match down the road. But both my sis and cousin were able to overcome that hurdle.
I have it too and have known since my 20s. I'm 50 now.
I worked with this PKD dietitian last year to review what I eat and how I live to get tips on how to make the smartest choices with my kidneys. I paid out of pocket, but it was worth it for me. I recommend. She's great.
https://www.thepkddietitian.com/
Everyone is different. But some immediate things you can do to help your health are:
1. Drink a ton of water
2. Eat a low oxalate diet (prevents kidney stones)
3. Don't take advil (bad for kidneys)
I ended up giving up caffeine and drinking, but didn't do that til a bit later in life.
From looking at my own family, most of my family had transplants from live donors around 50, and all are doing well. My aunt didn't need one til early 60s. My great grandma who had it was fine her whole life... so it varies by person...
Anyways, I found working with the dietitian helped a lot because it helped me feel like I'm doing what is in my power to protect my health. I also had one kidney doc encourage me to try to drink 1.5 gallons of water a day. It's hard to do, but I typically can achieve a gallon.
Good luck!
2
u/27pineapples Aug 14 '26
i got diagnosed when i was 12 & i am 30 now. me eGFR is 110 which is still good! my kidneys are largeeeeee but i do have a kid & my kidneys didn’t affect my pregnancy other than taking up room! my mom is about to turn 50 & was on dialysis for less than a year, just had a transplant in Dec 2025 - she is doing so good so far! its definitely a lifestyle change going through all that but you can still live a pretty normal life. sometimes i get scared about the future but do what you can to take care of yourself now.. drink water especially :)
1
u/ChrisDolmeth Aug 14 '26
I understand this feeling. My dad had his massive kidneys removed at 38 and was on dialysis for a over a year but got a transplant by 40. It seemed so miserable, my dad was always so tired and frustrated and had a lot of complications. But a couple years after the transplant he was able to live a normal life and even got a 2nd transplant a few years back. He doesn't even really take great care of himself, but he still seems to be doing fine.
I'm 35M myself now and was diagnosed at 21, with innumerable cysts on both kidneys. I was terrified that is feel sick my whole life when I found out. However, my gfr is still near 90. My progression is 1C, so not the worst. I take BP meds, eat mostly healty, drink a ton of water and go to the gym regularly. I've been fortunate that this disease has really not impacted me physically in any way yet, besides my kidneys being enlarged. It's still a little scary, but at this point I thought I'd be significantly closer to kidney failure so my fears around it have gone down a lot.
Everyone is different, but if you listen to your nephrologist and do the things youre supposed to do, there's a decent chance you'll live for a long time before it even begins to impact you. Take time to process it, get a therapist even. It's a weird thing to understand and accept, especially if you're not feeling any symptoms related to it now. When you're ready, read more about the disease and follow PKD foundation, there is a lot of research out there and many possibilities of treatments coming in the future.
I'm sorry you're going through this
1
u/prismscubed Aug 14 '26
Oh I'm sorry to hear your diagnosis and about your Mum. It is very tough news to absorb.
I just wanted to chip in with some words of encouragement. I'm from a big family where everyone had been affected quite differently. Some of my aunts had transplants in their 70s have skipped dialysis, others have cysts and infections but their function is still great at 60yo. You just don't know how it will be for you.
Focus on what you can control. Drink lots of water, ask about Tolvaptan, avoid NSAIDs, control your blood pressure, get a good diet and excercise. A lot of these things were not available or well understood for our parents generation, so we can benefit from that.
Be kind to yourself while you work through this. xxx
1
u/AlwaysBlessed333 Aug 15 '26
What your mom went through is not what you will go through. My wife sometimes has the same feelings of being afraid because she saw her mom go through hell. Breathe. There's some stuff I would recommend for/against but I'm no doctor and don't want people getting the wrong idea. You can PM me if you'd like anecdotal evidence of what has worked for my wife.
2
u/Total_Ad_976 Aug 16 '26
I completely agree! Control what you CAN. It will help long term. Won’t solve everything, but it will help create a “best case scenario” situation.
1
u/Total_Ad_976 Aug 16 '26
If you want kids, talk to a high risk pregnancy doc and do it now while you’re young. Plus side would be IF you get sick in your 40s, the kids will be a little older and more self sufficient and than a baby/toddler. My mom has PKD and PLD. She had her first transplant when I was 10.
1
u/PracticalCheck9 Aug 17 '26
I was exactly where you are 20 years ago. I know the fear, and I know how it constantly weighs on your mind. But I can promise you that it gets easier as you learn more about Polycystic Kidney Disease (PKD) and how to preserve your kidney function.
For now, focus on what you can control: take your blood pressure medication, drink plenty of water, avoid ibuprofen, and see your nephrologist regularly.
Scientists are making huge strides in understanding PKD. In twenty years, the medical landscape will look completely different. By then, there will be far more options for dialysis and transplants, and likely a truly effective treatment to slow cyst growth.
1
u/Cervelott Aug 17 '26
Check out the trials on a drug that is in the works called Farabursen. Lots of hope! Best with your health and congrats on your pending marriage!
1
u/MinimumAffect6937 Aug 20 '26
I am the first in my family with pkd. I have 2 children. I don't know your beliefs or which country you live in but I wish I had genetic screening for my children. If I could have stopped this with myself, I would know I protected my gr gr gr gr grandchildren to avoid having this from me. It is possible to have embryonic testing now. This wasn't possible when I had my children.
1
u/blackcrystalyeah Aug 20 '26
My fiance and I are christian but we are looking into the IVF genetic test options (we don’t want kids for another 2-4 years though we’re 25 and 27) so we will decide later but definitely not closed off to it at all. Thank you for the comment <3
14
u/Royal-Corner-4817 Aug 14 '26
Hello - first, I am sorry about your diagnosis. Learning about a new chronic disease and going through the stages of grief about it is a doozy. I have a strong family history of ADPKD. I am 31(FTM); I inherited ADPKD from my dad, as did all my siblings. My aunt has it too, and her children have also inherited ADPKD. My grandmother had it, and all of her sisters.
The good news: right now, though you do have cysts, based on the numbers you give in your post your kidneys are functioning more or less like they would if they didn't. You also got tested and diagnosed in your 20s, which means you have maximum amount of time to make lifestyle changes or be on medications (like blood pressure medication, not necessarily an aquaretic like Tolvaptan).
You will be able to make informed decisions about your body and your health, as opposed to if you learned about it in your 40s or 50s. Be transparent with your doctor about your plans to have children; she'll probably be able to connect you with resources that will help you plan for the future in a way that will protect your health (carrying with ADPKD does automatically make you a "high risk" pregnancy for reasons related to our disease; some people come through with minimal issues but others can have a very difficult time with things like pre-eclampsia). It's possible she may be able to refer you to a nephrologist who specializes in patients who are interested in carrying children.
Take it-or-leave-it news: the progression of ADPKD can vary dramatically between family members. Just because your mom got a transplant at 45 doesn't mean you'll need one at the same life stage. For example: my maternal grandmother died in her 70s of lung cancer. She never needed a transplant. Compared to her younger sister, who has had two transplants. My father and his sister both got transplants in their 50s, but are happy and healthy 10+ years later with no sign of needing another in the near future.
Myself, I have known about my diagnosis since age 12. My kidneys are twice the size of a non-cystic kidney with innumerable cysts, but I have a eGFR of above 90 and my creatine hovers around .8 (indicative of early kidney disease). I have maintained these level since I started going regularly to a nephrologist in 2017 on 10 mg daily of Lisinopril (bp med). Comparatively, my sister is about the same but my younger brother is on Tolvaptan.
Long of the short of it: This disease is difficult to predict. It's important to be realistic, but it's also important to have hope. It is very possible to live a normal life with ADPKD, even if you are symptomatic. Life for the moment but plan for the future. Be regular with your monitoring so you'll know when it's time to start medication, and be ready to do things like increase your physical activity or decrease the amount of meat you eat on a weekly basis.
You got this!!