PKD Charity for Autosomal Dominant PKD

960 members • 240 posts

I am having a hard time accepting that I have this, I am so scared

Hello everyone,

I am 29 years old, diagnosed 3 years ago by accident, during a stomach ultrasound, but somehow I blocked it after the nephrologist told me it was all good, I literally forgot about about it, I had a couple cysts on my kidney and one in my liver. I didn't google it back then. Recently, I moved countries, saw a new GP who seemed concerned, got a new ultrasound, and there are lots of cysts on both my kidneys. My eGFR is still good, but I have pre hypertension. I have been ready about it for a week non-stop and I have been having anxiety and panic attacks. I can't sleep, I have sweaty palms all the time.. i am so scared since there is not family history😞😞, I feel guilty for my husband, I don't know what is going to happen down the road, how do you guys cope? Any ideas?

12 Replies

oldest • newest

PKD has a really slow progression try not to worry about it just get in with your life, limit alcohol and salt but apart from that forget about it. I was diagnosed in 2007 by accident as well, no family history I’m the only one with it. I’m now 44 only just start on BP tablets I have lots of cyst on kidney and liver but I don’t feel Ill and wouldn’t know if not for scans. Doctors sometimes have a habit of making things sound too bleak. When I was disagnosed I thought I was at deaths door they way they made it sound but 10 years on still feel healthy pretty much. So just have your annual check ups and forget about it in between that’s my advice.

Thanks so much for your message, it is very encouraging. How do you cope with the annual check ups coming up?

I actually have my annual check up on Thursday! I usually try to write down anything I want to ask in advance as when I get in the room my mind goes blank. I generally keep things basic I’m just interested in knowing if the kidney function is still ok and whether there is any immediate issues and whether I need to do anything such as change BP tablets. Or whether there are any clinical trials I might be eligible for. I tend not to ask how much it has declined because i don’t find the information of any use other than causing worry which is to be avoided due to hypertension. The only time I really think about PKD is in the days before and immediately after my appointment. Try not to worry too much.

Thanks again for the valuable advice, given my obsessive nature I think I won't ask about the eGFR values or anything like that, I will just hear it from the Dr. Please let me know how your appointment went!. I have also written a long list of questions for the Dr. Thanks! and Happy new year

Dear 123432, thank you so much for your message and encouragement. I will do the low salt, low alcohol thing. I will also try to forget the in between. Thank you!!

Hi Theskewer

I know it’s quite a shock to discover that your a carrier of PKD and there will be a genetic link somewhere possibly but it is a slow developing condition. I have lots of cysts on Kidney’s and liver but have been diagnosed since I was 16. My GFR is still nearly normal and I’m nearly 58! There’s a lot you can do to help yourself. Getting good blood pressure med is vital and no hassle honestly. Get yourself a good kidney consultant and concentrate on getting on with life. Awareness is everything and believe me this disease is manageable.

Happy healthy New Year🎉

Regards Andrea

Dear Andrea,

Thank you so much for your kind message and your words of encouragement. Because of the anxiety, I got a beta blocker and that is helping my blood pressure a lot. I will also try on getting on with my life.. I am still worried about the future. Thanks again for replying to my message.

Hi Theskewer,

just want to say I don't think there is any good evidence on alcohol being particularly bad for kidney health, in moderate amounts anyway. And salt is only bad in high blood pressure. Some basic things you can do to keep your kidneys healthy is eating a plant based diet (or increasing plant foods) and drinking plenty of fluids. And keeping your blood pressure down obviously, but you know that

Thanks for your response atropa, I will eat more plant based foods and drink plenty of water!

Hi - I found out from a Doctors letter after my Dad's Post Mortum he was 60 and had PKD. I was the only child with this. They are on my kidneys and liver. Currently my largest cyst is 10cm and I have been offered an operation. I have started running - well completed a 10k last year and am determined to remain positive. You can either let this take over your life or you can take control of it and that really is the best option, you in control.

I feel fine at the moment and am determined to not let this rule my life. I had to change my career due to pain but now I am ok. Please stay positive and worry about the here and now not the later. It's my 50th this year and I'm so depressed ! Time to remain positive and not let this disease win! xx

Hi Theskewer,

I was diagnosed with PKD in my early 20s following a kidney infection. Fortunately for me, my mum had PKD (neither of her parents did so possibly skipped a generation) this meant that growing up she was always open and honest about it and I knew that one day I might be tested to see if I had it to, so when I did i was not shocked. Therefore I can understand how worrying this must be for you if you have not even heard of it. I would like to reassure you, my mum is 60 this year, she is very healthy, still has good kidney function and has no pains or anything apart from the odd bit of discomfort now and then. I also have no problems apart from the high blood pressure. As long as you manage the blood pressure, eat a healthy diet and drink LOTS of water (I mean like 3 litres a day!) you really can manage this disease and it really isn’t as scary as it sounds. I know it does affect people differently, but I am now 28 and being diagnosed earlier is definitely better so you can manage the blood pressure which will help a lot for when you get older.

That’s what I think anyways

Best wishes,

Mel

I hope you are feeling better about things now.

You might find useful support on the PKD Charity's Facebook group. Friendly people willing to share their experiences and suggest things that might help you. Hopefully you can help others there too!

facebook.com/groups/pkdchar...