Help with Hydronephrosis

[Braegorse]

Gross Hydronephrosis! Anyone have this and can give me some advice please

[Hidden]

The best advice I can provide with the limited information you've provided is for you to contact a urologist. Best of luck.

[Braegorse in reply to Hidden]

Thank you for replying. I'm under a Urologist but trying to find someone in my situation who can provide some help and reassurance xx

[Hidden in reply to Braegorse]

Perhaps if you were willing to share more. Do you have CKD, are you female or male, do you have a history of UTIs?

[Braegorse in reply to Hidden]

Of course, happy to share. I'm female 45yrs old. I was diagnosed with gross hydronephrosis in March 2020. I've suffered UTI for 15 or more years but the gross hydronephrosis is caused by a massive staghorn stone in offending kidney (left kidney stone is 22mm). The kidney now has no function and a Nephrectomy is on the cards. My left kidney measures almost 30 x 21 and Its been referred to by my consultant as a "monster". It is causing other issues where its pressing on small bowel and surrounding nerves and causes a mass in my stomach. I suffer with health anxiety and all I can say is that I'm terrified, and I'm hoping to find some support. My kidney function in my right kidney is good so no CKD.

[Hidden in reply to Braegorse]

Thanks for the information. Has your urologist spoke to you regarding the medical treatment for removing the stone since it may be too large to pass on your own? If not you have the right to speak to another urologist for a second opinion. You might be wise to seek a surgical consult to explore what a surgeon can do to relieve you of some of the issues. Having one working kidney is still going to over work that organ and you should be eating kidney-friendly meals. You might ask for a referral to meet with a renal dietitian who can help you eat the right foods to prevent another stone from forming. I've included an article that will help you get started until you can meet with a renal dietitian. Best of luck

kidney.org/atoz/content/diet

[Braegorse in reply to Hidden]

Thank you for this. My team will not remove just the stone the plan is a neprectomy of the left kidney. I really hope to find someone who has or is experiencing similar. I will now look at the article thank you

[CatOnACloud in reply to Hidden]

I think her kidney has so little function that it must be removed, so just removing the stone wouldn’t be helpful. Nephrectomy is necessary at that point. Hydronephrosis is a general term that can be just some swelling or increase in size, to the “gross” tag that means it’s huge, likely spilling over and causing persistent utis (15 years?!) and gee likely infections in rt kidney as well. If i am correct, then welcome to the club and to Michael as well.

[Michael__S]

I am suffering from hydronephrosis, on the right side. The likely cause was crossing blood vessel. I had a laparoscopic surgery last year but it appear to have been unsuccessful, I just passed a MAG-3 renal scan and awaiting the results. The base plan was to get that kidney removed should it have less than 10% of function left or to attempt to unblock it (the T-Scan was a bit unclear about this) and I suspect that the nephrectomy is going to happen. Maybe I am wrong and a bit pessimistic .. I believe that it was blocked for longer that the Urologist believe as I was always feeling or getting sick the year prior and the GP could not figure it out and I felt a bit ignored on that.

I have never been told the measurements of my kidney but I was told that the renal pelvis (-ish) was quite distended and I was also experiencing symptoms similar to yours but the Urologist never acknowledged a relationship, mine may have been much milder. I don't know the exact procedure for a nephrectomy but is likely more invasive than the laparoscopic I had.

The only experience I can share is that I discovered how good my body was at hiding the pain and doing weird compensation. I am working with physio for months now and there is still work to be done. I have issue with my hip flexors (a reinjury) and my core have been quite disturbed. The muscle themselves are functional but they don't behave as they should, they are relaxed when they shouldn't. Part of this was to hide the kidney pain that could barely feel every now and then. It took me a few months of trial/error and failure at doing basic exercise and I couldn't figure it out. I had no pain but I felt like crap and had hard time recover from a very mild stimulus to the point where I was wondering whether I had cancer. It now appear that my core issues had a snowball effect on almost everything I was trying.

It's not as bad as I make it look like but it's something that I underestimated. Your body is well equipped to repair itself and recover from the procedure but it can be a bit more tedious than expected. I did all the exercise that I was given at the hospital but not much after. If I get that nephrectomy I am booking myself with physio preemptively. I really think that it should be part of the recovery package.

[Michael__S in reply to Michael__S]

I am still waiting to see the nephrologist and have a deeper discussion about risk and consequences of functioning with 1 kidney but so far I am following a renal diet and following the guidance and restrictions for CKD. I feel much better now.

I have not found any information that the restrictions would be any different than any other CKD patient and I prefer to take my health issue seriously. I am not perfect but I want to behave responsibly and have a positive control over my health. I have worked with a RD to readjust my diet in line with my GFR. I mostly limited my intake of protein and sodium and avoid excess of nutrient such as phosphorus but still aiming for the adequate intake and other adjustment related to my health. I am eating more fruit and avoid processed food as much as possible.

Right now I don't have issue with diabetes or high blood pressure (I was pre high blood pressure before managing) which are the two main reason for CKD progression. But I believe to be at risk of diabetes as it is quite frequent in the family I used to have a sweet tooth. I am aiming to find new and better was to exercise as the protein limitation have a massive impact on my work capacity. Heavy weight training 6 days a week and 2-4 cardio session a week no more. That readjustment in itself hurt my pride a bit but wasn't too hard to do, my challenge is to establish what my new work capacity is most importantly I am now exercising to manage my disease.

Best is to assume that my health can change at any moment. I need to be more punctual with monitoring everything, even what is going well. Sure enough my blood pressure have slightly increased recently and I hope that it is caused by taking a break from exercise as I was feeling overworked. I also thought that I had my weight under control at some point and ended up gaining 20+ lbs without realizing and none of that was muscle. It caught me by surprise because I assumed that I didn't need to weight myself at all, that I was merely more constipated than last time. I need to fill a journal every day.

[CatOnACloud in reply to Michael__S]

Hi Michael. I’m listening.

[CatOnACloud]

Truly sorry to hear of this! Sounds like you need that kidney out asap. Because it is so huge, have they discussed yet an open procedure or a laparoscopic one? I would wonder if lap is at all possible…15 years of utis is no joke!!! All i can do is give you a quik telling of my story so you know you aren’t alone, and you’ve every right to be scared. Just don’t forget how empowering information and support can be, and I sincerely hope maybe we can get to know each other.

I am Adrienne, 49 yr old female from northwestern USA area. At 16, pregnant and in god awful pain at that point diagnosed only as frequent UTIs and increasingly unmanageable right-sided pain, ultrasound showed a right kidney severely large (hydronephrosed) with a renal tube defect of unknown origin completely stopping the normal flow of urine to the bladder from the kidney. As it was spilling over with infected urine, it was the answer to my nearly lifelong undiagnosed pain and UTIs.

I was told to abort my baby so the kidney could be drained with tubes of the infection before a kidney repair. Estimated at 20% function repair was supposedly possible, but i elected for total nephrectomy, feeling sure the estimates were exaggerated.

After a pregnancy spent on nitrofurantoin to help with infections and tylenol with codeine for pain (never touched it much) the surgery commenced 3 months after my delivery. It was 1989, laparoscopic procedures were yet to come, so I had an open procedure for the removal. I basically had a 9-inch incision through most muscle—and because it was the right kidney—much tissue. I called it my shark bite scar but they did plastic surgery on it so it isn’t easily seen today.

Anyways, the kidney had zero function left, and I spent a year recovering. The open vs the laparoscopic approach is very important to your duration and type of recovery. If it’s really a monster… but no matter what you need the sucker out! I know that 17 years of UTIs and also infections picked up in my good kidney were detrimental to my future and I am now CKD3a-b.

Honestly, I wrote an autobiography and much of it is about my kidneys. The consequences of being a child when it was happening and how that affected my body and psyche was something I couldn’t—deal with well. I simply wasn’t believed when I was in such pain before and even after diagnosis. However, I would say you’re in a MUCH better era and position for positive outcome now than I was then! You are gathering information so when you are at that appointment you can ask informative and compelling questions that will help you.

The best part is you have at least some time to gather your support team, be they new members or trustworthy family and friends. Anything I can do to help please just ask. If i don’t know I will not pretend to. Between your health and Michael’s—whom I absolutely say wow and extend the same support to him—and mine, we are all different but surely we can help one another

I forgot to say that my ureter had a tumor from birth in it, thought to be tissue of some kind: this was what led to the removal of the right kidney and adrenal gland. A VERY easy fix if caught before it interrupted the flow of urine, which, obviously, was not in my cards.

(Also, once a kidney is removed, your other kidney will grow somewhat larger (not much!) and take over the function of the other. You will be considered to have CKD from then on out. It doesn’t mean anything bad but I think is a way to make sure if you have any issues with the remaining kidney, it will be treated with urgency. I don’t know if this differs outside the USA. My GFR went to greater than 60 (the old method) then it went below. I’m okay at 45 currently on the eGFR. I was never told of this until…drumroll please…a few years back when dx CKD Stage 3. Ask your specialist! Mr. Kidney will likely know more about this. This is my experience.)

I’m cutting myself off here tee hee but compared to my autobiography? Yup, this is succinct