Kidney stones and cf?

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beleache

New member
Hey Marie,
<br />
<br /> I too have had many kidney stones.. My Dr. says I have a rock garden lol
<br />
<br /> I am also take Potassium citrate, but have kidney stones as we speak so dont know how well the potassium citrate is working , maybe w/o it there would be more ?
<br />
<br /> I have also had the Lithotripsy like Cory had... I hope you feel better , they can be painful ..
<br />
<br /> Take care <img src="i/expressions/heart.gif" border="0"> joni
 
R

rubyroselee

New member
Yeah, kidney stones are pretty common in CF. I think something like 20% of CFers get kidney stones. It has something to do with the way our body absorbs or does not absorb nutrients. For example, when your vitamin D levels are low, your calcium increases in your body (because they bind together), which can create stones. I just recently started taking supplemental vitamin D and my doctor's hope is that it will reduce the chance of kidney stones.

I have had them since I was 18 years old, and my first symptom was hematuria. Ever since then I have had intermittent flank pain and passed 10+ stones that were all less than 4mm in size. Luckily I've only ended up in the ER once back in 2006 for severe flank pain. I actually just went through lithotripsy on my right side for a 6-7mm stone and I will find out next week if the procedure broke up the stone or not at my follow-up appointment. I plan to ahve the left side done in a couple months to break up the 6mm stone on that side.

To avoid getting stones, it is best to increase your water intake. Avoiding certain foods may also help if you know what type of stones you have. But sometimes I wonder how much the preventative measures will help us with CF since we're more prone to getting them anyways.
 
R

rubyroselee

New member
Yeah, kidney stones are pretty common in CF. I think something like 20% of CFers get kidney stones. It has something to do with the way our body absorbs or does not absorb nutrients. For example, when your vitamin D levels are low, your calcium increases in your body (because they bind together), which can create stones. I just recently started taking supplemental vitamin D and my doctor's hope is that it will reduce the chance of kidney stones.

I have had them since I was 18 years old, and my first symptom was hematuria. Ever since then I have had intermittent flank pain and passed 10+ stones that were all less than 4mm in size. Luckily I've only ended up in the ER once back in 2006 for severe flank pain. I actually just went through lithotripsy on my right side for a 6-7mm stone and I will find out next week if the procedure broke up the stone or not at my follow-up appointment. I plan to ahve the left side done in a couple months to break up the 6mm stone on that side.

To avoid getting stones, it is best to increase your water intake. Avoiding certain foods may also help if you know what type of stones you have. But sometimes I wonder how much the preventative measures will help us with CF since we're more prone to getting them anyways.
 
R

rubyroselee

New member
Yeah, kidney stones are pretty common in CF. I think something like 20% of CFers get kidney stones. It has something to do with the way our body absorbs or does not absorb nutrients. For example, when your vitamin D levels are low, your calcium increases in your body (because they bind together), which can create stones. I just recently started taking supplemental vitamin D and my doctor's hope is that it will reduce the chance of kidney stones.
<br />
<br />I have had them since I was 18 years old, and my first symptom was hematuria. Ever since then I have had intermittent flank pain and passed 10+ stones that were all less than 4mm in size. Luckily I've only ended up in the ER once back in 2006 for severe flank pain. I actually just went through lithotripsy on my right side for a 6-7mm stone and I will find out next week if the procedure broke up the stone or not at my follow-up appointment. I plan to ahve the left side done in a couple months to break up the 6mm stone on that side.
<br />
<br />To avoid getting stones, it is best to increase your water intake. Avoiding certain foods may also help if you know what type of stones you have. But sometimes I wonder how much the preventative measures will help us with CF since we're more prone to getting them anyways.
 
S

Swedishstar84

Banned
Hey everyone
Thank you for telling me your personal experience with kidney stones and all tip what I could do about it. I am really grateful.
Today i got a letter from my urologist and he wrote that my kidney function did improve a little bit, good <img src="i/expressions/face-icon-small-smile.gif" border="0"> but because my kidney tests has been affected for a time now and I have been on dialysis before, I going to start taking kidney meds.
My transplant doctor said that I now need to take blood tests once a week to see how my prograf level is. I wonder for how long I need to do that. I going to call them and ask.

I hope everyone doing well.
Hugs /Marie
 
S

Swedishstar84

Banned
Hey everyone
Thank you for telling me your personal experience with kidney stones and all tip what I could do about it. I am really grateful.
Today i got a letter from my urologist and he wrote that my kidney function did improve a little bit, good <img src="i/expressions/face-icon-small-smile.gif" border="0"> but because my kidney tests has been affected for a time now and I have been on dialysis before, I going to start taking kidney meds.
My transplant doctor said that I now need to take blood tests once a week to see how my prograf level is. I wonder for how long I need to do that. I going to call them and ask.

I hope everyone doing well.
Hugs /Marie
 
S

Swedishstar84

Banned
Hey everyone
<br />Thank you for telling me your personal experience with kidney stones and all tip what I could do about it. I am really grateful.
<br />Today i got a letter from my urologist and he wrote that my kidney function did improve a little bit, good <img src="i/expressions/face-icon-small-smile.gif" border="0"> but because my kidney tests has been affected for a time now and I have been on dialysis before, I going to start taking kidney meds.
<br />My transplant doctor said that I now need to take blood tests once a week to see how my prograf level is. I wonder for how long I need to do that. I going to call them and ask.
<br />
<br />I hope everyone doing well.
<br />Hugs /Marie
 
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