chronic kidney disease

My little boy has FSGS, a rare and devastating kidney disease, and it has had a massive impact on our lives:

Kidney disease links: kidney-related bookmarks on Delicious

I’m slowly adding all my kidney-related links to Delicious bookmarks. If you want to have a look at all the kidney information I have bookmarked you can see it here (and I will be adding more over the coming weeks).

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kidney bean sculpture

Looks can be deceiving

From the outside, you might be hard-pushed to realise my son is ill. On the days when he is well he can pass for any healthy child. What you won’t see is him come home and collapse with exhaustion on the sofa after school. What you won’t see is him too sick to want to [...]

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Thumbnail image for Hospital, in two acts

Hospital, in two acts

It’s been a bit of a week here so I am revisiting this post which is quite timely. ******** There is a dichotomy to hospital visits when William is sick. There is the rising fever, the increasing lethargy or the developing complications, the few hours where I have an increasing sense of worry, developing into [...]

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Eight words

He’s in a terrible mood: insomnia, bone pain in his feet, kidney pain and prednisolone rages are all combining this morning to make it, well, tricky is the least awful word I can think of to describe it. But if it’s tricky for me today, it’s an ongoing battle for him. As we drop off [...]

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FSGS genetic test results

The genetic results are disappointing. William has a genetic ‘abnormality’ on the gene that is responsible for the genetic form of FSGS and while they can’t say that caused his fsgs they think it made him ‘more susceptible’ to developing idiopathic (ie non-genetic) FSGS. More worryingly, because he has a genetic abnormality it means all [...]

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My love/hate for Ciclosporin. But at this point mostly love.

I hardly dare say it for fear of jinxing it…. but… the Ciclosporin – the powerful immunosuppressive drug William is on – seems to be working. For the last few days his protein levels have come down to from 3+ to 2+ and now to 1+ on the dipsticks. Next stop negative we hope. Although [...]

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