Cf and kidney stones

[kmhbeauty]

Hello, I found out about a month ago that I have a 9mm kidney stone that is still giving me some pain in my back. I have not seen a urlolgist yet but I have an appointment this monday. I have DD508 and am 26 years old. I really think this has something to do with the cf. I dont take medicine for the cf besides antibiotics when I am sick and iv antibiotics when I was in the hospital twice. I do not think the kindney stone has to do with taking too much cf medicine. I saw in other posts that some of you have had very large kidney stones like myself. I was wondering what you all recommend. My plan was to just wait for the stone to drop out of my kidney and when I am in the excessive pain, go to the ER. I really do not want to do the surgery. I can not afford to take any time off work for this stone because I am already living less then paycheck to paycheck. This stone is really bad timing right now. I hear the surgery is very painful and there is a lot of down time. I am doing the natural remedies right now trying to break up the stone on my own. I really, really upset that not only do we have to deal with our cf, but kidney stones too! I am depressed because I try so hard to eat healthy, stay away from anything that is bad and causes cancer because I dont want to suffer from any other health related problem besides what I already have to deal with, which is cf. Ugh!! I just feel like we already have a heavy load, and mine seems to be really be piling on lately. Any advice would help. Sorry venting but I am feeling really low and like my health related problems are not becoming never ending. I would love to have a break

 

[trentallsman]

I've had several kidney stones in association with my CF. They suck, but trust me on one thing: doing the surgery is better than letting that guy pass through on its own. I've done it both ways, and I'll hit surgery up every time.

 

[kmhbeauty]

How long were you down for and what exactly did they do during the surgery? I still have hope that maybe I can pass it natually. Right now I am having minor back sharp pain that comes and goes. Like a light stab in the back every couple mins. When I was in the emergency room a month ago, they told me the kidney stone was very high in the kidney. I started the natural remedies and the pain went away for about three weeks. Now it is back, Im guessing the stone is moving down the kidney.

 

[LindseyRose]

I've also passed several stones. Most of them on my own, but two had to be broken up by laser lithotripsy . Is that the type of surgery you're talking about? It was one of the easiest procedures I've ever had done. I was already admitted to the hospital for a cf exacerbation when I had it done, so I remember not going home right away, but I don't think that was because of the surgery. It was done under general anesthesia, so I was totally knocked out. This was about 5 years ago, and all of my hospital visits seem to blend all together these days, but I don't recall being in pain, or any other reason why I wouldn't have been able to go home shortly after. They put a catheter in me so that the broken up stone pieces could pass easily, and that was removed about a week later at the follow up appt in my urologist's office. Kidney stone pain is no fun, and I would do that surgery again in a heartbeat. Perhaps they could schedule it to be done on a Friday so you can recover over the weekend and not take a lot of time off work?

 

[stephen]

kmhbeauty,

My advice is to drink, drink, ... and drink!

I used to get kidney stones fairly often. I was always able to pass them thank G-d, by drinking large amounts of water, at times over three gallons a day.

For the past 15 years I have been drinking at least three 20 ounce glasses of water, with about 3 ounces of juice added for flavoring, daily. During this time I have not been aware of any stones, thank G-d. The liquid is also good for keeping mucus thinner.

Wishing you the best.

Stephen
70 y/o with CF and Bronchiectasis

 

[lilmac1177]

I had a kidney stone in each kidney at once and i passed them on my own after one night of horrible, excruciating pain ... my doctor told me that CFers are prone to kidney stones due to oxalates that are found in some foods. at the time, i was eating quite a bit of spinach, which is high in oxalates, and so it could have caused them. some "food for thought"

 

[JustDucky]

I have had two kidney stones, both a good size, my last one I think was 8 mm, right on the border for it to be removed rather than passed.. Thankfully it did pass, but not without pain. I will not lie, it hurt more than childbirth itself. You will know if you start to pass it, you will get dull back ache first and then the colicky type of pain will start along with nausea (and vomiting in my case". I did head to the ER at that point and was given great pain relief... After a few days, my stone did pass, I had to strain it and save it for the urologist to send off to the lab. I have also heard that CF'ers are more prone to them.
I also agree that you should hydrate yourself.....In the old days, doctors used to tell the patient to drink some beer as it acts like a diuretic (will make you pee large amounts).
Your stone is pretty big, they may use lithotripsy to break up the stone so that it will pass in much smaller ones.. Sound waves are used for that, there is no cutting. Some people report soreness and some bruising, but otherwise I have heard it isn't bad. That may be something to consider.

Hang in there,

Jenn 40 wCF

 

[kmhbeauty]

I went to the doctor yesterday and they told me they are going to have me do the surgery in a little less then two weeks. I am going to do the sonic waves. Im a little sad because I just had my polyp surgery less then two months ago. I wish the cf doctors would of told me when I was younger to drink lots of water to avoid this. I never knew cfers could get kidney stones, never even thought about it. Im sure this wont be my last stone either. Us cfers really go through a lot! My disease has progressed a lot in the last couple years where I am really feeling a bit down about everything we have to deal with. Healthy people just dont understand how lucky they are! My boyfriend for example treats his body like crap and doesnt care. Drinks a ton of alcohol, eats horrible, when he has a little bit of pain, he will take double the dose of pain medicine. Im sad that its always something with our health and im sad that others take their health for granted while we suffer.

 

[kmaried]

Kmhbeauty - I had the lithotripsy (sonic waves), and it was such an easy procedure! And - it put me out of pain so fast... you're going to wish you had it earlier. I personally had mine on a Saturday morning, so I didn't need any time off of work. They didn't put me out under general anesthesia - just conscious sedation - so I was there for a total of maybe three hours at the most. Then home. I did feel a little pain as the particles were passing (they should give you pain meds for this), and then I was great! But yes - I have had to have a lithotripsy twice, and my Dr did let me know that they are seeing more and more kidney stones in CF.

 

[rubyroselee]

I have had kidney stones for 12 years related to CF. I had been passing them all until last year, when I had a couple 8mm stones that couldn't be passed - so I opted for lithotripsy. It was such an easy procedure! I had to have it done twice, each time just took the day off of work and returned the following day. They sedate you with Versed and pain meds so that you don't remember the procedure. Afterwards you should be able to pass the stone pieces without any pain or discomfort. I would definitely take lithotripsy over passing a full stone any day!

 

[kmhbeauty]

Thanks for the advice everyone. I am having the lithotripsey on thurs! I was feeling uneasy but read these posts again, and I feel better now!!

 

[rubyroselee]

Good luck today with your lithotripsy! It's a piece of cake. Keep us posted.

 

[Solo]

I am depressed because I try so hard to eat healthy, stay away from anything that is bad and causes cancer because I dont want to suffer from any other health related problem besides what I already have to deal with, which is cf. Ugh!! I just feel like we already have a heavy load, and mine seems to be really be piling on lately. Any advice would help. Sorry venting but I am feeling really low and like my health related problems are not becoming never ending. I would love to have a break

I gave up on eating healthy awhile ago; I eat anything I feel like, that usually means junk food all the time. My genes have been plotting to kill me since birth, so I don't think eating a few pieces of lettuce will change my genes at all.

But on kidney stones, I've been wondering if it has something to do with taking alot of pancreatic enzymes. I've been stone free for awhile but, I use to get them every few months. Last year I had the surgery to remove them. From my experience, I've had good luck with this product:
http://www.nativeremedies.com/produ...pn=Google+Main&ysmgrp=Product+Name&ysmtac=PPC

 

[Solo]

I am depressed because I try so hard to eat healthy, stay away from anything that is bad and causes cancer because I dont want to suffer from any other health related problem besides what I already have to deal with, which is cf. Ugh!! I just feel like we already have a heavy load, and mine seems to be really be piling on lately. Any advice would help. Sorry venting but I am feeling really low and like my health related problems are not becoming never ending. I would love to have a break

On the healthy eating thing: My genes have been plotting to kill me since birth, I don't think eating a few pieces of lettuce will change that. I eat basically anything I want. The way I see it is everyone will be worm food at some point; some sooner then others. Why use your time on this earth eating things that you don't crave for some false sense of "staying healthy."

Now to the topic at hand. Last year I got lithotripsy surgery, and am prone to kidney stones. They're not fun, and I often wondered if it has something to do with consuming a large amount of pancreatic enzymes. Anyway, I have had good luck with this product:
http://www.nativeremedies.com/produ...pn=Google+Main&ysmgrp=Product+Name&ysmtac=PPC

Good luck!

 

[kmhbeauty]

I dont this it has anything to do with the enzymes because out of my whole life (27 years) I have only taken enzymes for one year. I werigh 147, 5'7 so gaining weight is not an issue. I think it has to do with our bodies (cf in general) and with me a lack of water also.

 

[ubuffman2001]

I have found that drinking freshly squeezed lemon juice breaks up the kidney stone within a week's time. If this happens again, try taking 2 tbsp of olive oil (coats ureter so not so painful), and several tbsp of freshly squeezed lemon juice several times a day. I found this recipe on earthclinic, and it has allowed me to pass 4 stones so far. In the past I had a ureteroscopy done to remove a 4mm stone. I was asleep during the procedure, but had a pretty awful experience with the stent placed in my ureter. I couldn't urinate very easily and it was painful for a few days. Then the stent has to be removed, and only local anesthetic was given. It was not fun. Also the cost was over 2K back in 2007.

 

[pixiedust71]

I have had many, many, many. I always have them in my kidneys. 3 in one kidney, 4 in the other. They usually just sit there and don't bother me much. I take a lot of ibuprofen though for Cf and this probably helps with it. I pass them every so often. It will bother me for a day or so. I take large amounts of potassium citrate for them and avoid coffe, colas. I drink a lot of cranberry juice and water. Lithotripsy is not an option for me as I have a cardiac defibrillator in my abdomen so doc says surgerys my only option if they become bothersome.