Kindeys

[Gwenllian]

Hi!

Just curious here, and wondered, what symptoms did you display when your kidneys were being affected by WG?

thanks x

[andrew]

I was passing blood for about three months. I'm not sure what other symptoms were related to the kidney issues. The doc thought I had Kidney stones. Because I'm a born procrastinator, it took me at least a month (might have been more) to schedule a scan to check.

Are you asking in a general sense or do you think you have kidney issues?

[Twice]

Zilch.

First time, I was feeling pretty awful elsewhere and although there was blood and protein everything else seemed more pressing and dramatic. Although my kidneys failed at that time, they did come back eventually and they were fine for nearly 20 years.

Second time, like Andrew, I procrastinated and shut my mind off from the symptoms. I wasn't actually having much in the wayof classic WG stuff going on, but gradually became more and more tired and very very thirsty and passed a LOT of water. It was only when I started falling over at work (doh!) that I decided it was time to mention it to the docs. I think I was only going to clinic every six months at that point, and that was more than enough time to kill them off for good.

In my case, I've never had much in the way of pain with kidneys, the sneaky devils.

[witho]

I felt lethargic and lacking in energy at first, and my urine was dark. At the time, I didn't realise that I was passing blood and protein - my doctor said it was probably dehydration, but I knew I was drinking plenty of water so I should have argued with him!

Then I lost my appetite completely. I would try to eat, but could only manage a slice of bread with honey in a day.

Then I started getting waves of nausea - usually, first thing in the morning. I took a pregnancy test, but this came out negative.

Eventually, I was dry-retching every morning, and just felt absolutely miserable. Strangely, there was no pain, just utter, utter misery. I could barely summon the energy to shuffle downstairs to watch the television.

The whole thing went on for two weeks before I finally got the blood test...

[Gwenllian]

Fascinating replies - thanks.

My kidneys started to fail about 14 years ago, but I had forgotten the symptoms to watch out for by now!

Thanks x

[Gwenllian]

Hi! Me again...

Did any of you get 'pitting odema' in your feet/ankles?

[RCOSSIO]

Yes I had it prior to my diagnosis of WG, however with treatment in the last four months my creatine is back at normal levels and no blood in the urine.

But hearing your stories...I will be checking, as my doc has recommended my blood and urine at least every month for the next 2 years and quarterly for life!