Discussions By Condition: Kidney conditions

Possible secondary symptoms in long term hydronephrosis

Posted In: Kidney conditions 1 Replies
  • Posted By: minimits
  • June 11, 2010
  • 05:50 PM

When I was about 14 (more than a decade ago) I was diagnosed with hydronephrosis of the left kidney with most likely congenital origins. Since I was already in the hospital for something else the doctors at the time thought it was best to wait on dealing with the issue. Subsequent testing discovered the kidney was mostly dead (5% function) and relatively stable. My parents, fearing the drastic move of completely removing a kidney, decided to hold off on removal. After more testing and the same diagnosis at different hospitals and even the Mayo clinic, the condition was labeled stable but I was advised to get the kidney removed, but somehow it got set to the back burner. High school came and went and then college.. no real time to deal with massive surgery. Then after college I was in a small town setting and couldn't find anyone to tackle the surgery laproscopically despite many journal articles covering just such procedures. Who wants a 12 inch scar when there's an alternative?

Now in my late 20s and I still have this giant kidney. I don't feel terribly healthy for my age- overweight, aches and pains, poor digestion- but lately (developing slowly over months but worst these last few weeks) I have been feeling quite poorly. Intermittent lightheadedness (worse with tight clothes or strenuous activity or overheating) and slightly labored breathing have been added to the roster. A doctor's visit and blood test came back with only a bad vit D deficiency (on vit D supplements 2 weeks now) but nothing else. With no clear answers from the doc I'm frustrated and trying to find web ideas or answers. I'm also thinking of my happy little giant hydronephrotic kidney, which showed marked signs of increase between my teens and early 20s, and I'm wondering if this big old cyst filled water balloon (it has expanded across the midline of my body almost like a second liver) pushing down on my internal organs not to mention veins and arteries, might not be a cause of a lot, if not all, of my grief. Has anyone lived with hydronephrosis over a long time that has experienced secondary "non-nephrotic" symptoms? Is my thinking logical?

This ended up being a monster post, thanks for reading it all and thanks for any feedback.

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  • Yes, I have been living with hydronephrosis for a very long time and yes, the kidney changed in size but the doc is not sure as image measurement is subjective. I also had laparo. endopytolomy, didn't help much. I suggest you read a lot on the subject, listen to your body a lot, most of all drink a lot of water (consistantly thoughout the day), loose weight ( I work out between 5-6hrs a week and I'm not even big), and next time you see your urologist go prepared to ask a lot of questions. If your urologist is no good, change him/her for another. I did change urologists many times until I found someone who can answer my questions and takes me seriously. Never allow a doc. to bully you into thinking what he/she says is the last word, you're the boss when it comes to your health and never afraid to ask questions and for second opinions. Grieving and letting yourself go over something you don't have control over doesn't help...pick yourself up and get ready to do what it takes to live a relatively pain free life. I do have a lot of pain but I learned to live with it by slowing down and believe it or not when the pain is not severe working out or even long walk helps. Hope this helps....fellow sufferer
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