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some help for fellow sufferers

Post a new topicby livingwith on Tue Apr 08, 2008 4:30 pm


I have had kidney stones since I was 13 years old, now in my early 20s they’ve just become a way of life. Most people pass a stone or two and never pass one again, unfortunately that is not my case. I have been hospitalized for them at least a dozen times. I have some tips to help prevent the stones that seem to have worked for me a bit and some tips for helping w/ the pain of passing one.
I have found that reducing caffeine such as soda and increasing my intake of plain old water has...Read the full article

livingwith
 
Posts: 5732 | Joined: Thu Aug 09, 2007 2:36 pm

Re: some help for fellow sufferers

Post a new topicby murphy on Sat May 31, 2008 10:50 am

I have had cystine kidney stones since I was 9 years old - I'm now 50. I never seem to get rid of them. I have had 2 open surgeries, 6 percs and about 10 lithotripsy. I am going in for yet another one next week. I don't seem to get the horrible excruciating pain these days (thanks God) but sometimes I feel as if a skewer is going up through me. Does anyone else get this? These things wear me down. As I only ever had stones in my left kidney they sometimes talk about taking the whole kidney out. But then I would be so afraid I would begin to get them in the other one. Has anyone ever had them in just one??

I have read a lot of the postings on this site, and agree with everyone that it is so difficult to drink the amount of water they say. I find it so hard to do this and carry out a normal life. Searching for a clean bathroom is a way of life for me. I'm terrified of getting stuck in traffic, on a train etc as I have to go to the ruddy bathroom every 5 minutes.

Stents just don't work for me - the first time they put one in I ended up in the emergency room to get it out. The second time it was "hitting meat" and they had to take it out immediately without anestetic - wow that was nice...

Has anyone else had cystine stones - I understand they are quite rare!

Would love to share stories!

xx

murphy
 
Posts: 1 | Joined: Sat May 31, 2008 10:29 am

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