Hello. I’m new here and would like to talk. I have kidney stones (2 in each kidney) and my eGFR is poor at 41 which puts me at 3b. Creatinine 1.46 (nr 0.51 - 0.95), Urea 44 (nr 17 - 43).
I have kidney stones because of a medical condition which requires a medication which pushes a lot of Calcium through the kidneys. After the first stone, 6 years ago, I was put on another medication to stop the urinary calcium being so high. I see a Endocrinologist and a Urologist and between them and the GP it’s a merry-go-round of being ignored.
The last 2 years I’ve had a constant pain in a very specific spot of the right kidney. Along with several nasty urine infections. GP says it’s because of stones, Urologist says stones in the meat of the kidney don’t hurt and refuses to remove them.
The good news is that the last infection, 20th June 2021, seems to have changed something. I’ve had no pain for a few days and the blood and protein on the home urine dip tests have completely stopped. The colour and quantity of urine is much improved. I still have tingling in my face but it’s a bit better and I’m not sure if it’s a Kidney thing or not (tingling is a calcium thing). After 2 years of barely moving due to pain I’m really scared about setting it off again!
I’m waiting for an appointment with Urologist, overdue actually. Supposed to have Ultrasound first but haven’t heard yet. I’m anxious to see what’s going on with this stone.
Is there any chance that my kidney function can improve?
Thanks for reading.
(I’m on thyroxine, calcidol, indapamida, propranolol, b12)
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Jafwaf
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Hi and welcome to the community.There is always a chance for your kidney function to improve. While there is no cure there are many ways to slow the progression. You don't say where you live or what type of insurance you have but you have mentioned several doctors on your CARE TEAM. My first suggestion is for you to see a nephrologist and then have that doctor be your lead physician in directing your health care team. You, of course will be the one to make the final decision once you have their best medical advice.
The nephrologist will look at your medications and determine if those are your best options considering where you are currently with your CKD. You should try to see a renal dietitian who will look at your lab results and with you, devise a kidney-friendly meal plan specifically to meet your needs.
Until then you should consider going to drugs.com and using their MY MED LIST feature, enter all of your medications. When you finish that you'll find a list of all the interactions with other meds, with food, and which are not recommended for someone with CKD. Bring this up when you meet the nephrologist.
To learn what you need to know about CKD you should go to kidneyschool.org and view their learning modules. You'll learn a lot a be able to develop questions to ask your nephrologist. If you live in the USA you can go to the davita.com website and register for a free, 90-minute Kidney Smart class. Lots of information and resources will be provided.
Best of luck and come back and let us know how things are working out.
Thank you for your reply. I’m in Spain, on their health system. I’m English, in my 40s, and have only been here 2 and a half years, so still learning the language and the system. I don’t even know if they have Nephrologists or Dieticians, I never managed to see either in England despite asking. My Endocrinologist in England was my lead physician as CKD developed from my Calcium problem. Trouble is that it still took years to get a 24 hour urine test, and by then damage to the kidneys had occurred. I would be further on with my new Spanish doctors, but Covid has rather got in the way.
I’ll go onto drugs.com , thanks. Though amazingly I don’t take many medications. I know that pain medications are terrible for kidneys and it’s been lovely to not need any Naproxen for 10 days.
I’d like to start doing some gentle exercise again. I’m worried about moving the stones again, is that silly? Can I cause stones to move? I had a laser to move the last stone, under epidural as I can’t have a general anaesthetic, and am very keen to avoid another one if possible. Would gentle exercise be ok for CKD, I’m not able to do much.
Pick a knowledgeable physician you trust and work with that person on developing an exercise regimen that will work for you.It sounds like you'll have to learn all you can about eating well for CKD and make your meal plan until can see a nephrologist and/or renal dietitian.
You absolutely should see a nephrologist. Nephrologists are concerned about kidney stones because of the damage they can do to your kidneys. They will want to know what your stones are made of in order to modify your diet to prevent them in the future. Staying well hydrated is especially important. As for body movement or exercise causing the stones to move, I highly doubt it. They're gonna move if and when they want to. I passed a stone last year that was visible on an ultrasound and my nephrologist never told me to stop exercising in order to prevent its passage. Unfortunately, most doctors will take a wait and see attitude until the stones have left the kidneys and blocked the ureter. That's when the pain starts. The pain is actually a signal that your urine is being blocked. Only if a stone is very large will doctors become proactive to help prevent you from suffering the pain of a blocked ureter. They make a judgement call as to whether you can pass the stone yourself.
I’ve had a few CT and ultrasound scans. They all showed that the stones are (were?) in the meat of the kidneys. Where they hurt says my GP, but don’t hurt says the Urologist. If the stones are still there then they are way too big to pass, over 1cm each.
I’m overdue my Ultrasound, and will know much more then. Unfortunately summer closes a lot down. My GP takes the whole of August off!
I already know that the stones are Calcium. I should hopefully never make any more, since my Calcium condition has been corrected with medication. I might still need a diet change to help keep my kidneys as well as possible.
That is one LARGE stone. I'd be curious to know what they're waiting for. For it to get bigger and bigger? Doesn't make sense, but I'm certainly no urologist or nephrologist.
Oops. I notice you mentioned taking naproxen for pain. This happens to be one of the NSAIDs not allowed for those with CKD. Ive been advised that acetaminophen (Tylenol) is the only pain reliever recommended. Be careful and try to learn more about your kidneys.
Years ago before I had CKD, I would take naproxen once in awhile and it would knock out pain everywhere in my body. It's a great pain reliever, but very bad for the kidneys. Could naproxen be the reason you're not feeling any pain from the stones? Just a thought.
Best of luck with locating a good doctor. It's so important. Please let us know how things progress.
Yeah I know Naproxen’s on the bad list. I’ve tried many other drugs, even Tramadol, but nothing worked like Naproxen did. It was the only way I could manage to move at all, even then it still hurt all the time.
I haven’t taken Naproxen for 21 days! I miscounted.
Thanks for the clarification. I know Naproxen is a great pain reliever. I was tempted to take it again last month when I was down with a very, very painful strep throat and major throat and ear inflammation. When you're hurting bad, you have to do what you have to do. Hoping that you get some relief. Keep us posted.
I'm not sure how helpful I can be for you. When I was pregnant with our 4th child I began having kidney stones. Uric acid stones. Treated in hospital with sodium bicarbonate tablets and some mild pain meds. I was diagnosed years prior with PKD. I passed about 6 stones. Then a few years later they started back up. In all I've passed several dozen had blockage of a couple and had laser blasting of a few. My function varied only slightly. It was 12 years between last kidney stone and kidney failure. The stones weren't a big cause as much as my PKD underlying high blood pressure, diabetes which doctors refused to treat. I had both kidneys removed in 2006. No transplant and still managing well on dialysis. No more stones, kidney infections or UTI's.Blessings
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