Hi @caseyk
I am sorry to hear you are suffering, I have heard of lots of PKD patients having similar pain.
I had PKD too but was able to have my giant old kidneys removed at the same time as my transplant at Mayo Clinic in Rochester (you can see my posts on it under Transplant). Because PKD kidneys continue to grow in size this may be a good option for you too, it may be a solution to your pain.
Good luck and I hope you find relief soon,
Jolinda

Thank you for your reply. Most people say you only get back pain from kidneys and I don't want to change my Crohns meds if the pain is fron my cysts. How far along were you when you started experiencing cyst pain on a regular basis?

When I was at stage 4 like you are now I felt pretty bad in general, after transplant I feel great.
Are you in the process of looking for a kidney donor, is that something that is right for you?

I'm not to that point yet. My dad had PKD and he passed from a heart attack in 2001 so I don't have anyone to talk to who has been in this situation. Both my girls 25 and 29 also have PKD so I feel I need to be a good role model and get more informed. I have a new nephrologist that I see in February so I have a lot of questions to ask.

I remember how scary it was going through the process, but you are not alone…we are here as a whole community of people to support you. I'm sorry to hear that your daughter's have PKD too, t might be helpful to bring them with you to your appointment so they can learn new information at the same time. Do you have a list of questions ready for your new Dr?

I have more quesitons than I did the first time I saw him. My old doctor would tell me I am doing great and to keep up the good work. I became very complacent and watched my diet, took my bp meds, and didn't give it much thought. When I saw my new doc for the first time he told me that my disease is progressing more rapidly and sent me for an ultra sound. He asked me if I had any questions but I couldn't think of any because I was kind of in shock. I go back to him at the end of the month.