Floppy kidney

Hi @laujodrik! It sounds likes what you're describing might also be called a floating kidney, or nephroptosis. What a frustrating situation, especially when your health is otherwise great! I believe that a urologist would be the correct specialist to treat nephroptosis since it's a surgical fix, but I could be wrong.

There is an older conversation about this condition that you might find interesting: https://connect.mayoclinic.org/discussion/recently-diagnosed-with-nephroptosis-auyone-else/. How long have you been dealing with this?

@klp thank you for sending me those articles. Yes, I know it’s also considered a floating kidney. I saw my urologist yesterday who did the surgery. He says he has never had to do this procedure a third time and really didn’t want to. I can be a candidate for more scar tissue and other issues. I’m not in considerable pain or very little though it’s alarming regarding my GFR. He wants to take an IVP, which is a very outdated procedure at this time to see how far it dropped. He said, if he had to he’d bring it up with some mesh like they do with hernias. He believes part of my problem is I’m thin and my insides are very different than they should be. My ureter cord wrapped around my kidney and tore it off, which I may have mentioned, and doing so moved some of my organs. My primary, nephrologist and regular urologist is very against me having this procedure done a third time. They want to do numerous bloodwork to see if they can get my GfR to go up. Possibly with medication and a special diet. Also when your kidneys are comprised the calcium you get from food or pills does not get absorbed properly. Even though I worked out my entire life I have osteoporosis. My mom had it as well who also was very active. They feel it’s heredity. It’s concerning on that level as well. I have a lot to consider at this time. The discomfort/pain I can live with. I can’t with dialysis. I’m considering the conservative route for now and see what happens. Thank you again. I love this website. BTW my recovery was not very painful with exception of the stent I had from my original blockage of my ureter for 4 weeks . I guess in that respect I was lucky.

@laujodrik welcome to Mayo Clinic Connect. Since reading your post I’ve been trying to recall what I learned about human anatomy when I completed my biology minor in college, but that was a LONG time ago. I thought kidneys are connected to the bladder and that is connected to the ureters but maybe it is kidneys to ureters to bladder. (My dang memory!) It is really sad that something tore and now your right kidney is dropping. I hope I got that right. Sadder still that your eGFR is being affected by this. I’m unaware of any medication to improve eGFR but a renal diet can help. I had Stage 4 CKD and improved to Stage 3. The renal diet was part of that. But I have other health conditions that factor in (diabetes and mild hypertension).
It is good that you have both a nephrologist and urologist taking care of you. Are they in good communication with each other regarding your treatment plan?
I thought of something else that might or might not be helpful in your situation. I had a friend who required something called nephrostomy tubes (for a completely different condition). These were tubes that went into her kidneys (through her back) and drained urine directly into catheter bags that she attached to her upper legs. It was for the purpose of taking strain off of her kidneys and bypassing the ureters and bladder completely. These tubes and bags had to be changed regularly. That’s where I came in. I helped her put the new tubes and bags on. After that she could empty the bags herself as needed and do most anything that everybody else could do. It is just an idea but couldn’t hurt to ask your providers about it.
I sense that you have concerns about the possibility of dialysis. I do too. There are different types of dialysis and discussions about that. It might be helpful to at least learn more about it before determining what you can and can’t do. You are stronger than you think. Will you keep us posted on how you are coming along?

When my obstruction was first diagnosed they considered putting the tubes in. The surgeon said it would make his surgery much more difficult. Unfortunately I waited too long for this surgeon. My kidney was in place and then dropped in the month waiting to have my obstruction fixed. That’s all in the past and I don’t want to dwell on what ifs. My healthy left kidney at this time seems to be picking up the slack. I had a nuclear kidney test to see how each was functioning and I’m 71 left- 29 right. The nephrologist said as long as my kidney function is at 100 we can stop be concerned for now. He mentioned my GFR will fluctuate and I should not be too concerned unless the numbers get too low. He wants me to get bloodwork every 3 months and a comprehensive urine analysis if my numbers go down. I do have great doctors who are working together. It is the kidney, ureter, bladder. That’s why the ureter cord wrapped around the kidney and ripped it out of place. I’m starting physical therapy which my surgeon recommended. He said there are core exercises that can strengthen my core and keep my kidney from floating around too much. They’re concerned about it attaching to my bowel and then I have a new set of problems. Glad to hear the diet works for you and your kidney function is better. Also, thanks for your input.