kidney stones blog, my story and support
For such a common condition, I am not finding any active support groups on the internet. Any links would be great. I am struggling with the diet. My stones were calcium oxalate. I just cannot get over the foods I had to give up, then my 24-hour urine test showed my oxalate level double what it should be. Why bother following the diet, it didn't work. Sodium is in everything, it's nearly impossible to hit the mark of 2300 mg of sodium daily. This is extremely depressing. The only easy part is drinking all the water. I hate micromanaging food: calcium/sodium/protein. I've been very depressed since my lithrotripsy this past January. It just stinks.
I was told to go on a diet too. I have been to many doctors regarding recurrent kidney stones, now I am at the point of see a mineral specialist on getting my hyperparathyroid checked. Its more in depth than a normal thyroid test, because my normal thyroid test, tested fine. If the glands over work, they can cause too much calcium in your blood stream causing stones to crystalize in your kidneys and a whole host of other symptoms. This is not inhereited by what I have read. I dont know if this might help, but you can check it out. Some of the symptoms are recurrent kidney stones, tiredness all the time, aches and pains, ect. It has taken me seeing a mineral specialist to put this together. My urologist was never able to help me find out what was causing them. With high calcium levels in your blood and low vitamin D levels, this is a sign of this hyperparathyroid. They detect this through blood work and 24 hour urine test. Treatment is surgery or medication. I also hate micromanaging my food, it is not a good way to live life. I hope this may help you. Hope your feeling better soon. malisha
Doctors have told me that kidney stones are not inhereited. I have a family history of stones. It seems to be almost all the women in my family. My first stone experience was when I was 15. My pain was in the front and I couldn't handle it. The doctors thought my appendix had burst. Then couldn't figure it out. Once I said I had a history of kidney stones in my family they realized after x-rays I had a large stone that was stuck in my urethra. This experience was very traumatizing. It all happened so fast. After my surgery I was told to go on a special diet but it was nearly impossible. I have had a few stones over the years that I have passed on my own. They have caused UTIs and tearing of my urethra. I would love any advice or tips on diets or methods that have worked.
I had 6 kidney stones in may and I too have aunts in my family that also have kidney stones. There could be a medical issue that is inherited that is causing recurrent kidney stones, I believe. As for me, mine are calcium phosphate. In May I had 6 kidney stones and the mineral specialist there told me that real lemons can dissolve them, not the packet mix. Since then I made lemonade for a week straight from squeezed lemons and also ate those blue bell lim pops that are high in citric acid. When I went in on August the 4th this year for another CAT scan, it only showed that I had two left. I do think that for me the lime pops worked best. After eating lime popcycles for two days, I passed a 2mm at least stone that was visible in the collection hat. The pain was not as severe as before. I do think that the high citric acid helps dissolve them. If your calcium levels are high in your blood, this causes more calcium to be filtered through your kidneys and more likely to crystalize causing this type of stone. This could be common in your family, if you are all experiencing the same stone formations. I would suggest seeing a mineral specialist that can check your blood calcium levels. If this is the problem this is caused by the hyperparathyroid gland. It would help being on a special diet a little, but it would not really make a difference I dont think, if you have high blood calcium. If you cut your calcium out of your diet, your bones would become brittle and as you age you need it my urologist from UT Southwestern stated. This problem can be corrected from a simple procedure to the hyperparathyroid gland or just medication. You can research this on the web and find symptoms and information. My symptoms have been the same as yours with recurrent UTI infections. When I find more information, I will post it for you. malisha
Hi I understand how all of you feel I'd rather have a baby any day then go through the pain of kidney stones. (I went through natural childbirth and it is easier!!). Getting back to the topic, it is hard to not know what is wrong and why you make stones. I have been diagnosed with calcium phosphate stones, but don't know why my body makes them. I had a tough bout 3 years ago trying to pass a 5 mm stone. I had a fever and it was stuck and I was going into sepsis (PLEASE GO TO THE ER IMMEDIATELY IF YOU RUN FEVER DURING A KIDNEY STONE EPISODE OR UTI IT IS SERIOUS IT COULD BE TURNING INTO SEPSIS!!), then they stabilized me. I went in for a uteroscopy and he almost grabbed the stone but it went back into the kidney, he put in a stent, but it still would not come out and then I had a lithotripsy to break it up, which finally worked. The whole experience took a over a month to get through. It was a painful experience. Now I have a 6 mm and 8 mm along with many smaller stones. My urologist wants to break up the big stones, but right now I am not in pain, so I am going day by day. Plus I am nervous about the whole ordeal. I did not even know I had the stones, I had gone into the urologist to be checked for overactive bladder and he did an utrasound just to see how my stones were doing since it had been 3 years and he found that I had two big stones. I wonder if I should have gone for follow-ups every year, but what can be done just lithotripsies for the big ones I guess. I have an appointment with a nephrologist who specializes in kidney stones to see if I can get some answers, too. I did the 24 hour urine test 3 years ago and my urologist just said drink a lot of water, cut back on salt and live your life. So, I left it at that. I knew I had many stones in both kidneys, but tried to adjust my diet myself which obviously did not work. Now, I have decided to research this and take as much action as I can to get some answers, so I will post when I find out more. Also, right now I am undergoing another 24 hour urine test and I just had an ultrasound which showed the 8 mm and 6 mm stones and an abdominal x-ray which I can't see them on, but maybe the doctors can. I hope can avoid a CT scan this time as I would like to limit all the radiation. gigi On a good note, maybe hope in the future is on the horizon, take a look at these sites:http://www.eurekalert.org/pub_releases/2012-01/nsbr-ttk013112.php and
HERE IS SOME HOPE ON THE HORIZON, WISH IT WAS OUT NOW IT WOULD SAVE THE 10% OF THE POPULATION THAT SUFFERS FROM KIDNEY STONES. DOESN'T SAY IN HOW MANY YEARS THEY WILL PERFECT THIS PROMISING TECHNOLOGY--Lookup the article and read the whole story"Scientists with the National Space Biomedical Research Institute (NSBRI) are developing an ultrasound technology that could overcome some medical care challenges associated with kidney stone treatment. The new technology detects stones with advanced ultrasound imaging based on a process called "Twinkling Artifact" and provides treatment by "pushing" the stone with focused ultrasound. This technology could not only be beneficial for health care in space, but could also alter the treatment of kidney stones on Earth." Editor's Note: The release, images and video access are available at http://www.nsbri.org/newsflash/indivArticle.asp?id=454&articleID=155." This is from an article on http://www.eurekalert.org/pub_releases/2012-01/nsbr-ttk013112.php It is from the National Space Biomedical Research Institute
Thanks for sharing
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