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My kidney disease and how it's affected me
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kiki241881 posted:
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!
Reply
 
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Lainey_WebMD_Staff responded:
Hi Kiki241881,

Welcome to the community. Please feel free join our discussions.

I am sorry that you are in so much pain. You seem very brave and are fighting a difficult problem.

Have you found out why you are having so many stones?
 
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kiki241881 replied to Lainey_WebMD_Staff's response:
My right kidney is deformed, a third of the size of my right and more or less flat. The stones are calcium based, but no dietary change has made a difference in the frequency of them. My current doctor seems to think that the scar tissue that has built up in my right kidney due to numerous surgeries and damage from stones over time is causing blockages in my kidney which would result in a faster creation time for stones and a more successful breeding ground for infection, but the origin of why this pattern started has never been diagnosed.
I was told that whatever issues I was having with my right would not transfer to my left, but then why now am I getting stones in the left? If it was one I could understand, it happens, but my last CT showed at least 10-15 small stones in the left and at least 20 in the right.
I have seen over 15 urologists over the years and have yet to receive relief or a solution to the problem.
 
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Lainey_WebMD_Staff replied to kiki241881's response:
Wow Kiki241881,

I am so sorry that you are going through all this pain. I hope they can find some relief soon. Have you tried to talk the Renal Support Network to see what support assistance you may have? You can Google the information and hopefully they can offer some support or point you in the right direction.

Also, WebMD has a resource that might help. Here is the link:
Renal Resources and a Pain Management community that can be a great place to vent.

Keep us updated please.

Take care,

Lainey
 
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Lainey_WebMD_Staff responded:
Hi Kiki,

I am wondering how you are doing?

Lainey
 
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kiki241881 replied to Lainey_WebMD_Staff's response:
Thanks for checking up Lainey, I am doing ok, been very busy the past few weeks. I will check out those services you suggested, anything that might help can't hurt! I have a couple stones right now that are being quite pesky and have been causing quite a bit of pain, but I am eating better and drinking more (much to my bladder's chagrin) so hopefully it will help!
Thanks again for your help!
 
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Byroney_WebMD_Staff replied to kiki241881's response:
Hello Kiki and thanks for the update!

While you were away, we changed moderators so I'm the new kid on the block here.

Good for you on making the diet changes and drinking more. I hope those changes help reduce your pain and the formation of stones.

If you haven't visited the Kidney Community , you may want to look in there as well for more support.

Keep us updated when you have a chance,

Byroney


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