Kidney stones

@remagdhia. Welcome to MayoClinicConnect. We’re all volunteers here who share our medical experiences and health issues to try to help each other. No one is a physician so we Do you live close to Mayo? Could he instead refer you to a major medical center near you?

@risbourg, Percutaneous nephrolithotomy (PCNL) is used most often for larger stones or when other procedures, such as extracorporeal shock wave lithotripsy or uteroscopy, are unsuccessful or not possible. It sounds like your urologist suggests referring you to Mayo Clinic because your situation is complicated because of size and location and would like to get a second opinion. Mayo Clinic has doctors who specialize in percutaneous nephrolithotomy and other kidney stone treatments; they have extra training in kidney stone disease and, in many cases, see only people with kidney stones. As a result, they have extensive expertise in treating this condition, including fixing treatments done elsewhere that have failed.

I certainly would confirm this with your urologist, as you don't want to have to travel unnecessarily. But it may be worth the trip.

I too have ap·prox·i·mate·ly started around 10 at that point it was missed diagnosed til I was 15 and in er for over 12 hours because they couldn't figure out what was wrong first they thought bowel obstruction then finally my answer of kidney stone was discharged from we and sent over to clinic and waited in horrible pain and got to have my first surgery,of all time and was emergency because parents were in another city at work I was alone scariest part of my teen years and now I've been having them all time I am 34 now everything has caused me to have atrophic left kidney and currently in stage 3 chronic kidney disease since at least January 2019 so it's added new stress but trying to live life to it's fullest

@tracilynn0418 Hello, and thank you for joining us here at Mayo Connect! How did you find us? You no doubt have a lot of experience to share with us, learning to live with recurrent kidney stones. Have they ever researched what type of stones they are, that is, what the stones consist of? I know there are several types, calcium phosphate, calcium oxylate, uric acid, struvite. If they know what type, it may be of use to your medical team for treatment, especially if they are recurring.

My dad was prone to kidney stones, and had lithotripsy several times before his spine surgery. From then on, he could only do a medication. My sister had lithotripsy once for a stone. Several decades ago I had one stone, but passed it.

Having Stage 3 kidney disease usually means some form of medication, dietary restrictions, and a careful watch on bloodwork every 3months or so. Your atrophic kidney highlights the need to be careful. If you are comfortable, would you share what you are doing to manage your disease, and tell us how we can support you? We are not medical professionals, but will share support and experiences!
Ginger

I have been at stage 3, close to 4, for 8 years. First and foremost is diet, consisting of limited sodium and trying to save protein for dinner. Forget the salt shaker. Protein it is mostly chicken breast and fish, usually salmon or tuna. My wife is good at preparing chicken all kind of ways. I’ve discovered plant protein, especially eggplant. Very infrequent redmeat, organ meat, turkey, or pork is OK as long as it’s not heavily salted. We also get sushi from time to time, which can be a good source for unprocessed healthy protein. But I stay away from shellfish and heavily salted fish, like hearing. Cheese is another thing to watch out for and alcohol must be rare. I hope this helps.

@lagrange5 Good morning! Like you, I am in Stage 3b, hovering around eGFR of 34, due to an ultra-rare disease where my body is choking off the filtering components of my kidneys. Formal diagnosis was early 2015, and confirmed again Oct 2019.

Red meat maybe three or four times a year, and then it is a good steak. One morning I am sure to wake up clucking, I eat so much chicken! Fish is also good. I have gout/uric acid issues, so shellfish is off the table. As you mentioned, sodium is a no-no, as is watching potassium and phosphorus. Thank goodness I like apples, but I do miss oranges and bananas; sometimes I have a couple slices of banana if my husband has some with cereal. Fresh veggies, watching refined sugar. You're so correct, our diet and lifestyle choices play such a factor in keeping healthy as possible!

What is the cause of your kidney disease, if I may ask?
Ginger

Ginger, my chronic kidney disease was caused by hypertension. I was prescribed amlodipine and metoprolol. I have taken the amlodipine ever since. I had to stop the metoprolol, because of the drugging affect and preventing me from working. I was diagnosed by an excellent nephrologist at the Mayo Clinic and have been under that and other Mayo care ever since. In my view, they are the best medical people in the world.

With regard to the hypertension, I have consciously reduced stress, both physical and mental. I try to get a good night’s sleep. I joined a health club for exercise. All these measures, even one at a time, are helpful. I hope it helps you.

My husband had kidney stones twice and first time was off the wall painful for him the second time I gave him fresh lemon juice water 3 times a day and he passed it pain free . You need an ultrasound . It is rare lemon juice would be a problem but so worth a shot

There is anecdotal evidence that tart cherry juice reduces inflammation, particularly gout. I have been taking it for several months. That, and a diet of avoiding food purines, has worked to avoid a gout recurrence for me, without medications. You may wish to consider it.