I also have PKD. I am at 30% function. My left kidney is 17cm and causing me a lot of discomfort. I can't wear anything that sits at my waste and I can no longer sleep on my left side. I generally have to sleep to the right as sometimes laying on my back is uncomfortable also. I do occasionally have shortness of breath and I constantly have to pee. It's very frustrating and scary, especially not knowing when kidney failure will happen. I'm just curious what pain management is available as I've read that avoiding pain meds is best.

19 Replies

  • Thank you for sharing, can I ask what your numbers are? My story is still in progress, for 3 years my kidney function tests have been very low for the last 3 years, between 24 - 40, now I have other issues such as low potassium and high white blood count. I have another blood test this week and a scan on the 24th. I am very slim, live a healthy lifestyle, Vegan and run but in the past 2 weeks I've been hardly able to function.

    I am now getting worried about what it is, could it be cancer, and if it is CKD - what happens?! Little panickd about it all as I am the main breadwinner for my family always have been, my partner Paul is not motivated by earning a big salary so I have to do to raise my family. I'm worried about the scans and what they will find.

  • I'm not sure what my numbers are. My doctor will update me late February when I see him next. As far as I know right now my creatine levels are on the high side but my potassium is ok. He has only told me that my kidney function has gone down. I too am slim and very healthy and active. I think CKD is different from PKD though. I can tell you that I was originally diagnosed at the age of 20 and I am almost 43 and my father is on 16 years with a kidney transplant. He worked full time through 6 years of dialysis and went back 6 weeks after the transplant. It's hard but try to stay positive. It does wonders for the body. I can update you more after February 21st

  • You have a early diagnosis at 20, must of been a shock then, hard to get your head around it, what makes it happen, the questions go on and on...

  • Yes, it was terrifying when I found out because I was pregnant and worried about the baby but all was good. For me it's a family disease. Hereditary. My grandmother had it, my aunt, my dad and my brother. So far my son, age 21 does not have it. Fingers crossed. However, my nephew, age 11 does have it. It's sad

  • So pleased that baby was alright, I've never come across it before - so it's so new to me. Sad to hear your nephew has it so very young.

  • To the previous reply. Have you been checked for a functioning (benign) adrenal adenoma? I had one (now removed) which damaged my kidneys because of late diagnosis. As a vegetarian I had repeated low potassium results, in spite of a predominately fruit and veg diet, until the adenoma was removed.

  • Thank you so much Annie - no I have not been checked, I am hoping that structural issues will be picked up on my ultra sound next week but it feels like forever away plus I am totally wiped out. Really appreciate your input, it is quite depressing to be stopped in my tracks with exhaustion and I am getting really worried.

    Do you feel better now, has your kidney function returned to normal?

    Taker care.


  • Am fine. My kidney function has stayed at around 50% for the last 4 years since the op. It was 37% at that time. I had to change my gp to get someone to take notice of my symptoms and check out properly.

  • That sounds familiar! I've had to change Doctors also for the same reasons, gone from one extreme to another, now 3 bloods in a week, 3 doc appointments and a scan! Kind of spooked me!

    Glad you have stabilised at 50% - I wonder what mine issues are...sigh 🙈🙉🙊..

  • The scan hopefully will help with the diagnosis. It is so much easier to deal with once you know what you are dealing with. Fingers crossed for you.

  • Thank you Annie - yes indeed, the not knowing is a stressful time... thank you for your kind words.

  • I wish you all the best

  • What is your lifesyle like, do you look after your self well? How did it start for you? My issues have slowly been getting worse, and it's a big worry now - sigh 😯

  • I was 20 years old and 6 months pregnant when I found out. They did an ultrasound and saw the issues. I take great care of myself, eat healthy and exercise regularly. For the most part I feel good with the exception of feeling tired more often than before. Mine have been getting worse also but worrying causes stress and stress is very bad. Go on the PKD website and order the cook book eating well by Jacob Taylor. I found it very helpful

  • What could they see in regards to the issues when you were pregnant? The tiredness is mind blowing debilitating which is so hard as I normally on the go all the time. Stress is a killer for sure, but can't always ignore it! I shall indeed look on the website and look at the book, thank you!

  • The kidneys were enlarged and had cysts on them. I also have cysts on my liver and pancreas although they are not effected by the disease. That's the difference from CKD to PKD. My kidneys have cysts that decrease the function.

  • By the time I had my kidneys removed they weighed 5 kilos each and I felt like I was 9 months pregnant t with twins. Of course removing t hem meant dialysis and a fluid restriction but I was down to 6% percent function then anyway. Definately do not t ake Ibruprofen, mostly I took nothing as I didn't have pain that warranted medication just discomfort and awkwardness at moving about and I had to be careful bending forward in case I toppled over 😁

  • Wow, that's crazy. I hope mine don't get too big. I'm quite thin and surprised they don't show. I'm mostly just uncomfortable. Occasionally I have pain but I just manage through and don't take anything. I am aware that ibuprofen is very bad. The only think I take currently is a blood pressure medication.

  • My doctor has told me that I have at least 2 years before kidney failure. My creatine levels are continuously creeping up. I'm trying to do what I can to stop that from happening. Any suggestions would be great. My biggest issue is the worry. Trying to live my life knowing what is going to happen is hard at times. It really sucks knowing my future, kidney failure, dialysis and hopefully a transplant. The waiting is scary. I've seen the toll this whole process has taken on my dad and my brother. It's like there's a time limit on my life. I'm not sure how to deal with it.

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