I just found this website just recently and I think talking to people that have pain just like I do and understand the way I'm feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn't work. I have some good and bad days but mostly bad days. I still go to school and next year I'm hoping to go off to college but I don't know what to do because I can barely function at home. I miss almost 2 days in a 5 day week at school and I already am allowed to go in late for school. I had to quit my job that I loved so much when this all started. And I have lost about all of my friends now because I can't go out and I'm in so much pain. Also my parents don't understand what I'm feeling and they can't deal with this any longer it seems like. My boyfriend of almost 2 years is trying his hardest to understand and he is amazing but I know he can't take all of this all by himself. It's hard to talk to someone who truly doesn't understand the pain I'm going through.
Some of the doctors I saw told me I'm crazy. And I know that I'm not! Does anyone have some answers for me? If you don't want to talk in front of everyone else then email me at laurenrrunkle@yahoo.com please.
Thank youuu!!
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2 comments
I am 18, I have had LPHS for 2 years now. I completely understand what your saying. It has changed my life so much. I can't do things normal teenagers do.
I got diagnosed with LPHS around August of 09. I opted to go ahead with the auto transplant and had my left kidney moved to my right side in October. The surgery went well and for about 3 months I was pain free. The best 3 months I've had in a long time. Right after Xmas I started having more blood in my urine than ever before and having that familiar excruciating pain on my right side. I saw my urologist who told me it had to be my "native" kidney causing the pain, meaning my right kidney because since they had moved my left kidney it was no longer connected to any nerve endings thus couldn't cause any pain. I had a ureturoscopy, which didn't help only confirmed that my docs thought the LPHS has now affected my right kidney too.
They presented the idea of now moving my right kidney to my left side, I know there is only a fifty fifty chance it will work but it did work last time. HAS ANYONE EVER HEARD OF AUTO TRANSPLANTING BOTH KIDNEYS? I live in MN and doctor at the University of Minnesota which has some of the leading researchers for this particular syndrome. I'm so tired...i don't want to have to take dilauded and percocet every day but I'm sure there will be far more complications with the transplant this time around. What people who don't have this disease don't understand is the point of sheer desperation you reach when you have been in pain so long with no relief. Has anyone had both kidneys moved? Did it work? If so for how long? Hope this post finds everyone as comfortable as possible. Please contact me with any info or questions. Best of luck to you all.
Mandy
mandyrmueller1@yahoo.com
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