Heavy Cysts

[Oldearkie_83]

Has anyone with ADPKD had any luck with shrinking the cysts? My stomach and abdominal area is distended from carrying over twenty pounds of the liquid filled cysts.

[KidneyCoach NKF Ambassador]

This is confirmed via scans that they weigh and measure this much? My kidneys were never that big but always had cysts ruptures, infections, kidney stones, blockages etc. In the end they were a risk to a transplant so out they came. They were about 16 to 18 cm so not terribly large. My brothers were larger than a football.

I've known others who have undergone fluid reduction in multiple cysts. Painful yet successful temporarily. It takes on average about 3-6 months then must be done again. Most are very happy to have the option.

Have you discussed this with your nephrologist? What do they say?

[Oldearkie_83 in reply to KidneyCoach]

You are more than welcome to come to NW Arkansas to view the CD of my kidneys ultrasound, or if you wish to maintain your anonymity, you may contact the NW Arkansas VAMC @ 479 443 4301 for my complete records (Robert Lea 3013), or any that you wish. You can get your very own CDs of all my ultra sound sessions. There is a long standing authorization for anyone who is curious, whether it is a wino who lives in a ditch, or a self styled expert, or President Trump, to have access to any or all of my medical records. From previous postings, you have seen what my experience has been with the local VA Nephrologist (?). Maybe you missed those? I am currently on a search for another, hopefully more learned and honest. When that happens, postings will be made of the results. My cysts are only fist size (the largest on each kidney) going down to BB size. My kidneys cannot be seen for the complete coverage by the cysts. There are plenty of examples available on the 'net of this advanced cyst coverage. So far, I have been tracking mine (kidneys) for almost fifty years and am well aware of how the cysts progress. I am not inclined, as yet, to do the procedure to draw liquid from the cysts as it is apparently just urinating into the wind and the ramifications can be severe as I have been determined to be autosomal dominant.

Regards, Oldearkie

[KidneyCoach NKF Ambassador in reply to Oldearkie_83]

Gosh, no need to be defensive about my question. I know many with ADPKD who have "guessed" about their kidney size *and* diagnosis of PKD so I was merely curious. I have photos of my kidneys after their removal if you're interested. I was diagnosed 40+ years ago. My father did home hemodialysis in 1967-1970 when he died. This was prior to clinics when everyone either did it at home or died. I am the youngest of 7 children, 5 of whom ended up with PKD and of those 5 I am the only one still living.

I wish you all the best. Many Blessings

[FlowerPreciousLover]

Oldearkie, so sorry about your added weight due to liquid filled cycsts and hoping you can find a solution to shrinking the cysts. Thanks to your post, I've now searched out more info on ADPKD.

Also on the mend from Diverticulitis and have learned more about your earlier sharing of the role soluble vs unsoluble fibers play in diet management of D. Thank you.