r/ADPKD

Incredibly frustrated because the transplant team I'd prefer want me to lose 40-50lbs to meet their BMI requirements for going on the transplant list, but they admitted they dont take into account the size/weight of my diseased kidneys inflating my BMI UNLESS I specifically ask my neph to call them and beg for them to take it into account and reconsider.

My health is too poorly to lose that much weight from traditional diet and exercise means. Its all incredibly frustrating and I want to scream. Like. My kidneys are 1ft tip to tip each. They are covered in cysts, and likely weigh quite a bit. Why must it be so difficult for them to take that into consideration.

I am 18 right now .. will it be curable by the time i reach ESRD ? So i dont die because of this disease ?

I’ve just dropped egfr from 40 to 30 in 3 months. I’m curious about what other people’s experience with rapid decline was when they hit 3C or numbers like these. Was it a continuous drop or a faster decline when you got to this stage?

Hi everyone,

I’m 24F from India, and I’ve been wanting to write this for a while because I don’t really know anyone personally who understands what it feels like to live with ADPKD at a young age.

I was initially diagnosed with ADPKD when I was 16 years old, at a time when my father was undergoing dialysis.

At that point, there weren’t really any specific medications available to slow the progression of ADPKD, and I was told that complications or progression would usually become more noticeable after around 30-35 years of age. I was mainly told to stay healthy, be mindful of certain foods/vegetables that I shouldn’t consume in large amounts, monitor my blood pressure, and continue regular monitoring. Thankfully, my BP was normal at the time.

But emotionally, being diagnosed at 16 was a lot to process.
I had been watching my dad go through the pain and difficulties of kidney disease since I was around 9 years old. So when I found out that I had the same condition at 16, I think a part of me immediately started thinking, “Am I going to go through the same thing?”
I don’t think I ever really knew how to process that fear.

Around that period, I was also dealing with PCOD/PCOS, which I feel was affected by the stress I was going through as well. I’ve been managing that mainly through lifestyle changes, and thankfully, by God’s grace, things have been getting better.

Fast-forward to last year, when I was 23, I had a full-body health check-up and found out that my BP had started to increase and that my doctors felt my ADPKD was progressing more rapidly.
I started medication for hypertension and also started Tolvaptan.
My Tolvaptan dose has been increased gradually because initially my body was quite exhausted, and putting too much load on it at once was difficult for me.
The side effects have also been an adjustment.
The increased thirst, frequent urination and especially the urgency to urinate made me quite anxious about going outside or being in situations where I couldn’t easily access a bathroom. At one point, I even found myself considering carrying/using adult diapers for situations where I was worried I might not make it to a bathroom in time.

I know that might sound like a small thing to some people, but mentally, it was a big deal for me.

Sometimes I think about how my dad was at least in his late 30s/40s when his condition became apparent, whereas I discovered mine at 16.
I know that doesn’t necessarily mean my future will follow the same path as his, and I know everyone’s disease progression is different. But having watched him suffer for so many years, it’s incredibly difficult not to connect my diagnosis with everything I witnessed growing up.

And this is probably the hardest part for me:
How do you stop being afraid of the future?
Sometimes it feels like the people around me don’t understand why I’m worried.
Even my sibling feels that ADPKD isn’t really something to be concerned about and that perhaps I’m overthinking it.
But when you’re the person actually living with the diagnosis, I feel like the thoughts can become very different.
It’s not just a word on a medical report.
It’s something I’ve watched happen to my father.
It’s something I was told I had when I was only 16.
And now I’m 24, taking medication, dealing with Tolvaptan side effects, monitoring my BP and thinking about what the next 10, 20 or 30 years might look like.

Sometimes I wonder:
Is there hope for a normal life with ADPKD?
How do people in their 20s stop constantly worrying about what might happen to their kidneys in the future?

How do you mentally separate your own journey from what you watched your parent go through?
For those of you who were diagnosed young, how did you learn to live with the uncertainty?

And especially for anyone taking Tolvaptan:
How did you adjust to the increased thirst and urination?
Did it eventually become easier to manage?
How do you handle work, travel, going out and everyday life while taking it?
Did you ever feel overwhelmed by the treatment itself?
I’d especially love to hear from people around my age, particularly women, Indians/South Asians, or anyone who was diagnosed in their teens or early 20s.
I’m not really looking for medical advice or changes to my treatment. I’m more interested in hearing about your experiences and how you cope mentally.

I think I need to hear from people who are actually living with ADPKD and can say:
“Yes, I was scared too. But life didn’t stop.”

If you’ve been through something similar, I’d really appreciate hearing your story.

Thank you for reading this.

I've neglected my examinations for almost 3 years and looking back my eGFR was about 48 back then IIRC. I had a bit of skewed up results due to lifting heavy and being active.

My previous nephrologist already retired, so I'll have to see a new one. I don't have any guidelines but I'm assuming that 72 hours of no lifting/strenuous activity before starting the 24 hour urine collection should be enough? Also during those 72 hours I'll be sure to have plenty of water and limit caffeine. The following morning after the 24 hour urine collection, I'll be doing the blood tests, which I've heard is also very important to drink enough water in advance.

Would be glad to receive any suggestions, thanks!

Anyone tried Mebendazole for adpkd? If so how was your experience?

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.

Officially have reached out to the transplant team to start the process of getting on the transplant list. Pushed to see my neph sooner so i can talk my options for future dialysis.

Im. Weirdly at peace? I had my grief over this all a long time ago when I was diagnosed 10 years ago as a teenager. I think my friends and family are more worried than I am.

Im pretty content and confident with the team at Wash U St.Louis, and my neph with them. They've been so lovely compared to my more local neph.

Wish me luck on my imminent journey, folks!

Hello everyone good bless you all, I just got my blood lab results and fortunately I'm taking the meds well, my AST and ALT actually went down before my AST IS 31 and my ALT is 53 and now it's 17, 40. BUT unfortunately I got scared because my TP went up by 1 point and my creatine went to 94 from 77,

I'll be quite truthful to you guys but I did eat a bit of red meat, 2x3 inch pizza, and small cup of ice cream because it was my grandma's BDAY like 3 weeks ago.

Did it cause my creatinine to spike? But regarding to my diet now after the situation is fine oats and apple for breakfast, vegetables with almost no salt because I use spices, White meats and such.

Please comment what are the effects of the meds you. Thank you guys we will all live longer.

Hey there! I’m 38 yo female, diagnosed with the bubbly kidney ✨ disease, at age 5. Currently my last MRI showed: KIDNEYS: Enlarged multicystic kidneys measuring approximately 19.4 cm in craniocaudal dimension on the left and 16.3 cm on the right, previously 14.5 cm and 14.3 cm respectively. Bilateral renal cysts, some of which are hemorrhagic, measuring up to 9.1 cm on the left and 6.5 cm on the right.
Could this be the cause of side pain while driving for like more than an hour at a time? I’ve tried adjusting the seat etc, but this is kinda of new for me and wondering if others experience this. Thanks for reading and may our EGFR always hold strong! 🥲

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.