I am only 33, and I was diagnosed about 3 years ago. But around 25 I started having lower back pain, and kidney infections and just knew something was off. About the same time, I started to seemingly gain weight- but only around my midsection and my ribcage. The lower section of my ribs seem to stick out more each year. I diet and exercise, but still my middle expands. I have both PKD and PLD. I get asked every couple of weeks when I am due, which just makes me sad and angry because my blood pressure has yet to be controlled by medication so I am unable to actually have children at this point without risking my life.
Sometimes, when I am in a particularly short mood, I snap back at people and give them all the gory details of my kidney disease when they ask about my (non-existent) pregnancy. They always look quite shocked and shut up quickly.

My abdomen is huge because of the enormous liver and kidneys. Over the years my rib cage has expanded, moving upwards and outwards. It's now completely distorted to accommodate the huge organs and I imagine that even if the organs are removed, it will not recover.

I just turned 34 and for the past year my ribs have started hurting. I've had lower back and side pain since my twenties, and now that my kidneys have grown significantly over the past couple of years, this dang rib pain has started. People always think I'm pregnant too as Mrs. Cox mentioned. I am curious as to what your doctor says about it, feeb. I expressed concern to mine about the possibility of a rib just breaking from the kidneys growing too big and she kinda looked at me like I was crazy and shrugged me off. I am so sorry to hear of the pain you both suffer. Thank you for your posts. It feels good to not feel so alone.

Oh my, Chewitt, I wasn't aware that could happen. I'm so sorry to hear :/

Some years ago my consultant told me that the body just keeps accommodating as the organs grow. I have read of a rib breaking and even perforating the liver in very rare instances. I move quite carefully, but largely because it's all I can do. The rib pain is definitely worse on the right side, where my liver pokes out a lot. Like the other joys that come with PKD, you learn to live with it.

*nods* A body with PKD sure does a lot of interesting things. I always say I have a basketball in my belly. :D

I am feeling very blessed after reading this that I was born with a long waist. Most of the bulk of my kidneys falls below my rib cage and I know this helps with my pain. I still feel so full and it is often hard to digest my food. I eat smaller amounts more frequently but it feels like it gets stuck much of the time. I do go to see a chiropractor regularly I think that helps a lot...it helped my sister too she suffers with strained ligaments from the weight of her organs.

Although I'm sorry each of you have experienced the same thing or something similar, I appreciate knowing I'm not alone. Something really bothers me about doctors not telling us of all of the things that can and probably will happen as the disease progresses and our organs grow larger. I knew my kidney function would decline and I might eventually need dialysis but I did not know about all the other things that could happen, such as expanding midsection. It's upsetting. Because of digestive and breathing issues due to crowding, in October of last year I had cyst decortication surgery which helped some., but my rib cage continued to stick out.

Doctors seem to just leave it to the patient to go on the PKD voyage of discovery alone. Not everyone has the same experiences and Nephrologists only want to monitor kidney function and the immediate effects of declining function e.g. High phosphorous. They can't fix the back pain, rib pain etc that comes from having huge organs to haul around. They monitor my liver function with some basic tests but that's all anyone can do. When I was first diagnosed I asked the doctor whether my abdomen would continue to grow and he said quite simply, "yes," so I knew to expect this. I didn't know quite how big it would become, though! If they warned us of what might happen, it would probably be too much to contemplate. The truth is, it's difficult to predict who will suffer which ill effects, so they don't try. Still, it would be better if some of the questions which Nephs can't answer weren't just ignored. I'd prefer some sort of response to being ignored.

Greetings all and thank you for your responses. I’m sorry man is so tardy. My doctor said (About my expanding rib cage and waistline and associated discomfort) We might consider at some point, if the discomfort becomes too bad, another cyst decortication surgery to create some space. At some point, he said we might have to consider a nephrectomy. I will delay that as long as possible because it will put me on dialysis. My GFR is 20 and I know I’m knocking on the door but I want to delay as long as possible. I am listed for a transplant at Houston Methodist. The waiting time is said to be 4 to 7 years So I guess dialysis is likely but I’m not ready to accept that it is in Inevitable. . My rib cage has expanded and, particularly on the left side, is beginning to be a bit tender. I have bilateral inguinal hernia’s and a rather large hernia dead center between my rib cage where my gigantic liver is poking through the muscle wall.

One other thing I forgot to include in my previous post is that my doctor said after a nephrectomy or a transplant physical therapy can return my rib cage fairly near its natural location. That was encouraging but I can’t imagine how it would be done.

Good to hear from you feel. My eGfr is also around 20 but I’m putting off being listed for transplant (liver and kidney) until next year. It’s encouraging that your doctor said the rib cage can be returned to a more normal shape. Hang in there. Hopefully you won’t need the procedures you describe prior to transplant.