Incontinence / OAB Community: Support Group

My kidney disease and how it's affected me

I am a 29 year old female and for the past 12 years I have been developing kidney stones and kidney...

Posted by kiki241881

I am a 29 year old female and for the past 12 years I have been developing kidney stones and kidney infections. At first the stones only came once every 6 months to a year, and at that point my doctor told me that my body is just prone to producing stones and I would just have to live with it. After that pitiful diagnosis I sought a second opinion at Loyola University Medical Center and received my first bit of help, but the commute that I had to make back and forth was impossible to keep up with and I sought out a doctor closer to my area.
After about 5 years of occasional stones, extractions, lithotrypsys, and numerous stents the problem grew worse.
In the past 5 years alone, I have had over 200 kidney infection, most requiring 3 to 5 days of hospitalization, well over 1000 stones, around 40 different stents, 2 nephrostomy tubes (one of which clogged within a week of insertion and could not be removed so they inserted another right next to it, this is while I was pregnant also.) During my pregnancy 3 years ago I was hospitalized for 5 out of the 8 months, my daughter was delivered over a month early and a week after giving birth I developed sepsis and was hospitalized for over 2 weeks.
The past year I continually have numerous stones in my kidney, and now my left, which up until this time, I have NEVER had ANY problems with, has started to develop stones and according to my last CT which was preformed not even a month ago, both kidneys are filed with stones and my right kidney is down to less than 10% function according to my renal scan.
In the 12 years I have had probably over 2500 stones, hundreds upon hundreds of kidney and urinary infections, have been hospitalized more than I can count, and NOTHING has been done to resolve the problem. I fear that sine I am now having problems with my left that it wil start to deteroriate and I will wind up on a donor list and dyalisis before my 35th birthday. My current doctor has cancelled a nephrectomy that was to be preformed on my right kidney 2 years ago, and 2 surgeries to try and scrape scar tissue built up in the kidney to reduce the number of infections and stones I get. And within the past month and a half, I have developed a brownish vein pattern on my upper right thigh and it doesnt go away and I have no idea what caused it.
I feel like I am lust waiting around to die, I am in pain on a daily basis, the stones are always moving and traveling through my ureter which causes constant pain and prohibits me from living my life even remotely close to the way I want to. I cant work, no employer wil hire on a person that has to go to the hospital more than work, my 3 year old suffers because she has a mom that cant always get up and play and run, do what normal mothers SHOULD be able to do for their children.
I do not want this to sound like I am seeking pity, I am not. I am looking for ANY suggestions that ANYONE may have. If you have, or someone you know, has gone through something similar and have ANY advise, I would greatly, greatly, greatly appreciate it.
Thank you for taking the time to read this, and I wish everyone the best of health!View Thread

Posted by kiki241881

6 Replies | Reply | Watch This Discussion Report This | Share this:My kidney disease and how it's affected me I am a 29 year old female and for the past 12 years I have been developing kidney stones and kidney...

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