any one ever have

[Scarlett81]

Hi,

I just had a cat scan of my lungs and they came back fine. But, the scan showed I have kidney stones in my right side.
Anyone ever have them?
Is it Cf related?
What can I do about it, if anything? The doc said not to worry unless they start to cause pain. So, I'll wait.
But-if anyone has had them-what kind of pain do they cause? And what did it feel like?

Thanks alot.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

Never had 'em, but I know being dehydrated can really contribute.

Drinking lots of water can help dilute the stones and help them pass less painfully.

 

[LindseyRose]

I had my first (and only so far) kidney stone a few months ago. It was extremely painful, but I passed it on my own in about 45 minutes. I wasn't really sure it was a stone because I've always heard of people ending up in the ER when they have them. But nonetheless I took it out of the toilet, took it to my doctor, and labs showed it was the most common kind of stone.

I got it shortly after I started the hypertonic saline. I wondered if maybe all the salt was dehydrating me, therefore causing the stone....?

A funny sidestory to my episode-
I was at home by myself when it happened and I was a little frazzled and confused about the whole thing (C'mon, I just peed out a rock!). I knew I should get it out of the toilet but I didn't know how to do it. The first thing that came to my mind was to use the turkey baster! So I tried it and it didn't work. Then I realized I had some gloves and just used my hands. Then I threw away the turkey baster...
I went to work that day and told my friends of my ordeal. A few days later one of the bartenders had heard about it, but the story had changed. He asked me "Did you really use a turkey baster to get your kidney stone out?" Before I responded "Yes," I realized what he was asking. I then told him "No, I got it out of the TOILET with the turkey baster!"

Oh, how stories get turned around! It's a pretty funny image though...

 

[sue35]

I have not had them but my mom has had them three times. They are very painful and she said that she wishes that she would be going through labor instead. BUT if you go to the hospital it is much better because you can get major medicine to help through the pain. So I reccommend if you feel anything odd to go to the hospital. She passed the last one in the hospital and said it was a breeze. Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">

I also heard they run in families, anyone had them in your family?

 

[blindhearted]

ahhh....kidney stones....my old "friend". I wish I could say I have never passed them, but I can't. My first stone had to be surgically removed due to the size, it was blocking my kidney (it took them two yrs of me being in on and off pain to find it). Thank goodness I had no damage. My mom said she rather give birth than pass a kidney stone. I have not had children, but I have had kidney stone pain...and it makes me wonder if I even want to try labor. When I have kidney stone pain (or attack as its called), I have a dull ache in my lower back that becomes more intense to the point that it feels a band wrapping tightly around my body, cutting off my breathing. This is usually accompanied by the inability to find a comfortable position, sweating, vomitting, screaming (if you can get the air) and feeling like all you can do is pee (often this is a first sign, the feeling of a full bladder but do drops when you go). I find some relief with a ice pack (if I can lay still long enough) or someone rubbing my back (like you would a woman in labor). I usually take a half of davacet (sp?) and three advil (as recommended by my doctor) as well as a half of phenergan (sp?). It usually helps ease the pain. I am on a medicine called Urocrit-K to help break them down since I have so many, however I dont think it is working. My father (no CF) has kidney stones badly. My mom has had them too. I'm not sure if it CF related or genetics for me. Plus I live in the kidney stone belt of America. My kidney stone problem is pretty bad....in June of this year, in 11 days I passed 12 kidney stones. Seems like the more I pass, my body get use to it and I dont seem to have severe pain, just non-stop feeling to pee and some slight pain in my urethra (like hot needles poking) when one is ready to be passed...which I rather have that than full blown pain (last time I had a full blown attack was the last day of my honeymoon in Oct 05). I'm not trying to scare you, but I wanted to answer you question as honestly as possible. Drinking water will help you (I am the worlds worst for not doing it), laying off soft drinks (I have flare ups when I drink a lot of them), careful on red meat and dairy intake (if you notice when you have these products u begin to hurt more in your lower back). From what I understand, once you have one, the only thing to do is pass it...it doesnt go away. But drinking water helps make the passing go smoother. I've actually heard if people drink distilled water it helps even more.

 

[jenhum]

I also had a scan of my lungs done and they found one. It was about 6 years ago, and they said it was too big to pass, so as soon as it started giving me trouble they'd have to do surgery....but thankfylly it has never caused me any problems. They told me that it could be due to too much calcium (?!?!) or too many soft drinks. I cut back on soft drinks for about a year, but Coke and milk is pretty much all I drink, so I eventually fell back into my old pattern. I thought it was interesting that blindhearted also said something about red meat, b/c I eat a ton of that too.

 

[Scarlett81]

very interesting everyone!

A while back I posted a thread about possibly having pleuresy b/c I was having this weird kinda sharp pain in my side, and it sometimes prevented me from breathing in b/c it hurt so bad.

The thing is, my pfts are higher than they've ever been, my x rays have all come back normal. My lungs are literally the healthiest they've ever been. So how could I have pleuresy?! Most people agreed that it couldn't be pleuresy. So I put it on the back shelf and decided if the pain got unbearable I would just go to the ER.

I get the pain probably 2-3 times a week max. It starts as a dull pain, then usually progress to the type where I try to not breathe deeply b/c (just on my right side)-it hurts too bad. I'll breath deeply and slowly-then OW!-stab. And no matter how hard I try I just can't get comfortable till it goes away. It's never been to the point where I felt like I had to go to the ER. Well, maybe once or twice-but I will try to avoid the Er at all costs!!

Anyway, Danyell: The pain you described, though I don't think I've ever had it as bad as you!-sounds exactly like what I get.

Sound like that? It would make sense. I know there is nothing wrong with my lungs-the Cat scan and all xrays are normal.

So now the thing is where do I go from here?

 

[Alyssa]

I have loads of experience with kidney stones -- had several, done just about every procedure you can do --
passing on their own at home
passing in the ER
surgery to reach up and get them (fun stuff!)
surgery to blast them into small pieces to pass

There are different "types" of stones -- you won't know why you are forming them and if a change in diet will help until you know what your stones are made of -- unfortunately you cannot tell that until it comes out and they send it to the lab. Yes, water is good for helping to pass the stone but only if it has detached from the kidney and is trying to "get out". If it is still just sitting there and not trying to get down the ureter, water doesn't change anything. Water is also a good idea to help prevent the formation of a stone, (getting dehydrated can get a stone started) but once it is started and still attached the amount of water you drink will not have any effect on the stone itself - having said that, though, it is a good idea to drink as much water as you can stand in a day to help prevent more stones from forming.

I grow calcium oxalate stones -- I've done the full testing two times (urine collection for 24 hours & blood draws) and all my numbers are within the normal range -- on paper there is no reason I should be forming stones, but I do! Since the only thing I can change is the amount of water I consume in a day -- I drink 2 liters every day !! I didn't think it was possible to do, but I got used to it. Cannot say it is full proof, since I know I once again have several stones sitting in one kidney -- just waiting to grow to a big enough size to do something about.

Now -- onto other questions
Did they tell you how big your stone is? I think 4 mm is the size when they start talking about doing something pre-emptive -- anything smaller than that should be able to pass on it's own (whenever it decides to detach itself) -- depending on how much smaller and the shape of the stone is how uncomfortable you will be. I've had some that I passed in less than an hour without any pain killers and I've had others that put me in the ER with real drugs to help manage the pain -- each one is different - if you are able to pass it at home get into the bath tub, for some reason being under water/supported by the water takes away some of the pain.

A word about the pain -- like I said above, depending on the size and shape -- but the larger ones hurt like crazy! On a scale of 1-10 the pain is an 11 -- completely unbearable -- worse than labor pains only because it is constant, you never get a rest period (like in between contractions) I have been in so much pain I was throwing up - doubled over, laying down, standing up - doesn't matter, the pain is unbearable no matter what you are doing.

Now that I have scared you half to death -- it is possible you will pass it and you may not even know it (if you can knock it loose while it's still small) it's possible that the next time you get a scan they won't see it at all!

Here are a couple of links that seem to have good basic info
<a target=_blank class=ftalternatingbarlinklarge href="http://kidney.niddk.nih.gov/kudiseases/pubs/stonesadults/
">http://kidney.niddk.nih.gov/ku...es/pubs/stonesadults/
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.urologychannel.com/kidneystones/index.shtml
">http://www.urologychannel.com/kidneystones/index.shtml
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.gicare.com/pated/edtgs29.htm
">http://www.gicare.com/pated/edtgs29.htm
</a>

 

[Alyssa]

Oh -- and congrats on the lungs looking good ! My daughter had a scan looking for abdominal pain and they found a stone too!

Also wanted to mention that, no, I don't think there is a connection between kidney stones and CF -- stones are pretty common in many people.

 

[Scarlett81]

Hi Alyssa,

Thanks for all that info-I went to all the links you provided and read them. I think I'll try some of the naturopathic remedies before I move on to the doctor-provided the pain doesn't get out of control.

My new question is-the doc said the stone/stones look very small. She said it wasn't enough yet to do something about. But, I've been getting the pain. If they're that small, why would I be getting such pain? Maybe they missed some?

 

[Alyssa]

What kind of pain are you having?

With a CT scan, it's fairly unlikely that they missed anything.

The only reason you would feel any pain from a stone is if it is trying to get out of the kidney -- they can sit there happy as a clam for years and never drop out -- eventually they will, but it is quite a coincidence that you would start having pain within a few days of finding out you had them -- although defiantly not out of the realm of possibility! (Just making sure your pain is from the stone/stones and not something else)

If it is just starting to move out and down the tube you will have a lot of back pain. As it moves down closer to the bladder you will get the "I need to pee" constantly feeling along with the killer back pain. The farther down it gets, the closer you are to getting it passed.

I think the measurement they usually say needs medical intervention is 4 mm or larger. If your doc said they looked pretty small, I'd ask to clarify what their size it -- with the scan someone should be able to tell you -- <b>it is always best to work directly with a urologist</b> -- this is what they do -- I have suffered needlessly and been given the wrong treatment and diagnosis when dealing with other doctors who do not specialize in urology.


Keep us posted about what's going on.

 

[Scarlett81]

I should have clarified Alyssa-

I had been having this weird pain on my side for a month or so-not every day, once in a while. It was right under my right rib cage-from the front wrapping around to the side. It would feel like a bad dull ache, then sometimes start to get a little sharp, but never bad enough to go to the ER or anything.

I didn't want to rush into getting it tested, b/c I had had a bad fall at the time, and thought it could even be I sprained a rib or something. The pain would come about 2-3 days a week, and stay each time for 30 mins or so.

So I ignore that. Then I need to have a CAT of my lungs, so I have it and she's like-oh you have stones.

So I said, oh ok. Then a few hours later it clicks-I bet that's what this pain is from. The past week or 2 though it's improved greatly. I think it 2 weeks I've gotten it two times.

I've concluded either this is from stones, or I did bruise, sprain or even break a rib from my bad fall. Of course, that might have shown on the CAT too.

Who knows? I know its not my lungs, b/c they are healthier than they've ever been and my pfts are through the roof.