Hi all,
im 38 & was diagnosed with stage 3A PKD in Oct 2025.
The PKD was found by chance when I had bloods done for something completely unrelated which resulted in them referring me for an ultrasound. luckily for me I am symptom free so find it hard to believe there is a problem.
my GP has put me on statins & BP medications, I have an appointment with my consultant next week to discuss genetic testing & potentially taking tolvaptan.
it has taken a significant toll on my mental health but touch wood with the correct help im now in a good place.
im looking for people with pkd who can share their stories & am happy to answer anyone’s questions about PKD if I can.
sending much love to you all xx
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Hi Rachel,
Yes, I have PKD. It can be very slow, until you almost reach the stage for dialysis. I am at egfr 13. I was on tolvaptan for about 5 years. It is difficult to tolerate but it can be coped with. I don’t really know any good tips though(apart from lots of ice and maybe coconut water) - don’t let it stress you out. Learn good lifestyle tips now, diet, fitness etc. I’m 53 and they get more difficult when you are not in the habit. Research about pkd, there is lots of info about.
Thanks, Rod
Hi Rod,
thank you for sharing your story. do you mind me asking about the tolvaptan? was there a reason you only took it for 5 years? did it help slow down your progression? what side effects did you have if any?
I have my next appointment this friday to discuss going on it. from what I have seen online it makes you very thirsty.
Rachel
Hi Rachel,
Tolvaptan does slow it down but you need to be prepared to be thirsty and for constant trips to the toilet. I was stopped when I reached 15 egfr. You have to go for monthly blood tests as well for the first 18 months. There are lots of bad rumours about it, for example people said they became addicted to diet cokes or slushies. Depending on your circumstances, it is not too bad.
My consultant was very slow and cautious, you need to be patient. It took several appointments before I started on Tolvaptan.
All the best for your next appointment,
Rod
Thanks Rod,
really appreciate you taking the time to share
Hi Rachel
I too have PKD and was 32 when I was diagnosed. I would recommend that you look at the PKD charity website where you will find lots of very useful information specific to PKD. In particular there are women’s health issues that will be very relevant to you. I do not have any experience of Tolvaptan(it was not available in the early 2000s) as I also had Polycystic Liver Disease and had a liver transplant in 2015 which excluded me from that medication when it was eventually approved for use. Had I not had PLD and needed the transplant I would definitely have tried it as it was the first meaningful medication made available for PKD. When I was diagnosed with PKD I was basically told to go live my life and as I was a new mum to concentrate on that…. Oh and to avoid salt which I pretty much did anyway as not keen on salty things so that was not a big issue for me. At the time I felt quite lost with no real support except for annual clinic appointments that only really monitored weight, blood pressure and blood work. Beyond that there was no specific support. Both my Granda and my dad had PKD and died in there 40s so I pretty much thought that was going to happen to me and it was constantly at the back of my mind. However, times have changed and my journey like everyone else’s is specific to me as yours will be too. If there is one thing that I wish I had done differently it is, arming my myself with information on PKD and knowing how to advocate for myself. There are times when you will need to check that medications etc are suitable for you given your diagnosis and you will need to remind health care professionals of your diagnosis to ensure you are managed appropriately. It is very important that you do this. Your renal clinic will monitor you as necessary but try to find out as much as you can about managing your lifestyle, diet etc. There are many research and clinical trials etc happening and breakthroughs are hopefully on the horizon over the next few years. Wishing you all the very best on the journey ahead.
K
thanks so much for sharing. how are you now if you dont mind me asking?