Kidney stones

[jshet]

My son just recently after a lot of pain and blood in his urine, passed 2 kidney stones. I emailed his urologist who said that people with cf are at risk for developing them. This is something I did not know.

We we just did a 24 hour urine collection and he is scheduled to meet with a nephrologist in a couple weeks for the results. The urologist said they may be able, from the urine test to determine the type of stone and the best way to prevent others from forming. He said he may need medication. (Just what he needs, more medication). I would do it if it could prevent the severe pain he experienced from happening again.

my questions are, do many of you experience kidney stones? Are people with cf more prone to get stones? Were doctors able to pin point the type of stones you have produced? Do people with cf tend to develop the same types of stone, and if any of you are taking medications, what are you taking and is it working?

thank you so much in advance,
Janelle

 

[stephen]

Drink a lot of water!

Years ago, before being diagnosed with CF, I used to get calcium carbonate kidney stones all too often. It was recommended that as a preventive measure I should drink a lot of fluids.

For the past 15 years I try to drink three 24 ounce glasses filled with about 20 ounces of water and 4 ounces of juice daily. It's not always pleasant and I often I just gulp them down.

Thank G-d this seems to work. I have not had a major stone since. Occasionally I do get some very minor "kidney" discomfort which may be a small stone passing. (I do see a urologist regularly.)

PS: The large amounts of fluids is beneficial for CF too.

 

[hammerpocket]

I was having a kidney stone every two years for a while (three different instances). I don't know if this is a coincidence, but two of them occurred during summer vacations, including once when I was an hour away from the nearest emergency room. The first time it was really scary. After that I knew what was happening, so it was less frightening, if no less painful.

I don't remember being told anything more useful than to drink more water. Lots of people say drinking cranberry juice helps. I don't know if there is any proof of that, but I drink it regularly now, usually mixed about 50/50 with water. (I prefer it with sparkling water, but I don't think that's as good for hydration.) I haven't had a stone in three years now. However, like stephen above, I do occasionally feel some kidney discomfort that may be related.

 

[BreathEZ]

I've had kidney stones several times since my late 20's. I'm in my mid-40's now and swear by this regiment. Every 3 months I drink 8 ounces of freshly squeezed lemon juice before bed. Usually I just chug it ! Then i mix 1-2 ounces of the freshly squeezed lemon juice with 5-6 ounces of water once every hour for 8 to 12 hours depending on how your stomach can tolerate the acidity. I know it works for me because I had at least 3 kidney stones in each kidney and was scheduled for surgery. A scan of my kidneys was done a few days before the surgery but I had done the lemon juice regiment a week before the last scan. I showed up to the hospital and was prepped for the surgery. My urologist came out to me before they were about to wheel me into the operation room and said I can't locate any of your stones. I told him about the lemon juice and he just laughed and confirmed that this does work. I ended up leaving the hospital (no surgery) and was scanned one last time to confirm no kidney stones. The results.....All Clear ! So I hope this helps and good luck

 

[jshet]

Thank you so much for the great info. I know drinking a lot is very important. The one hurdle we have is my son also has autism and hates to drink. He has a feeding tube but a concern is that the type of formula he is on and because of allergies, it's the only one he can use can be contributing to dehydration since it is so concentrated. I am going to start putting water trough his tube daily because he hates to drink.
BreathEZ I am going to do the lemon juice thing also. It will definitely be going in tube wise because I know he will never drink it.
it seems this will be an ongoing issue of making sure he stays hydrated to keep the stones at bay. We just need to get a routine down because he spends so much time hooked up to his feeding pump now I don't want him on it 24 hrs.
he currently does feeds from 10 am until noon and then 3 blouses throughout the day.
thanks again

 

[hammerpocket]

jshet, your mention of the tube-feeding formula reminded me of another change I made that might be more important than drinking cranberry juice: I stopped drinking Scandishake supplements. I don't know anything about tube feeding, but I wouldn't be surprised if there is a similarity to supplements like Scandishake, which I think are hard on the kidneys.

 

[jshet]

Thank you Hammerpocket for your reply. You are right about the his tube feeds contributing to dehydration. Unfortunately we have no choice but to use a feeding tube. He is 17 and weighs 72 pounds. The formula is very concentrated.
This is one thing I am going to discuss with hi gastro. next week and then with the nephrologist when we see him. I was wondering if giving him pedialyte trough his tube would actually be better than water.
Any ideas to try to prevent new stones from forming are greatly appreciated. Thank you do much!