I was diagnosed back in December during and ultrasound for something else. Now I have more information since then. My eGFR is 100, my parents are clear, my kidney size is 12.5 and 13.9cm according to the MRI. I don’t have HBP yet but BP isn’t great either. My kidneys are covered in cysts, but those cysts are small. I have 10 or so cysts on my liver. I am 30 years old, female. I didn’t get screened for aneurisms because I am low risk according to my neph. I know thinks are quite strong for me right now.. but I feel this cloud of doom over me. I am going to therapy and It is helping a bit. But I am still severely depressed. Over the next few months I will be undergoing genetic testing. I got married back on August and I am grieving over a lot of things. I am not sure I should have kids the anymore. I am so scared to end up on dialysis. That is my greatest fear. Losing my freedom. How do you cope mentally? Any tips are well appreciated.
Written by
Theskewer
To view profiles and participate in discussions please or .
I know you’ve had this diagnosis but belive me you’ve quite probably been born with this condition and it’s a low developing disease. A lot of people never know they have it. I being one of those people. I have PKD and aneurysms but never know I had anything and although it’s such a hard thing to live with the screening is brilliant and medicine is making ongoing progress.
Patients with PKD trying for children can have the faulty gene now extracted so you no longer pass the condition. Please do not stress... there is so much that can be done. I have lots and lots of cysts on kidneys and liver, but have no pain and no knowledge that they are there. You will not suddenly become sick.
I also have genetic modifiers from my ‘healthy’ fathers side which my nephrologist has confirmed is slowing the disease down you may also have this.
PKD is not always a death sentence. You a whole long way off dialysis. They have drugs to be tried before you ever get to this. Your GFR would have to be low to be at that stage.
Concentrate on keeping well and arm yourself with positive information, listen to the professionals. Keep up with blood works Low salt in your diet, dont smoke etc. If BP goes up med are great also these days and you can lead a perfectly normal life. Drinking in moderation, nights out, holidays everything you did before.
You don’t feel it but your in good hands and aware, so believe me just get on with your life.. at least you know your condition,, there’s lots of emotional help out there with help group probably in your area full of people with PKD.
Very best wishes and chill this spring Sunday please ask away with any questions or just to rant.. we’ve all been there and most of all you are not on your own... ever!
Hello. What you are experiencing is normal. It can take time to get through this stage.
Although I was diagnosed over 40 years ago, I do get feelings of doom. I know now that they are inevitable and that they will pass.
At the PKD Charity, we offer a personal befriending service and can match you with someone who knows what you are going through. Email me on tess.harris@pkdcharity.org.uk
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I have huge polycystic kidneys and liver. I am having one of my kidneys removed to make room for a donor kidney. Has anyone else had
I am a 47 female with PKD and my kidneys are working at 35%. I struggle on a daily basis with tiredness, fatigued, headaches, etc. 
Was Diagnosed at age 20 with PKD I’m 53 now
Children and children's children?