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 negative or trace is better than 1+, at this point we could not ask for anything better. Reducing the protein in his urine means the difference between dialysis in as little as a couple of years and putting off dialysis (and therefore a kidney transplant) for, well nobody knows how long, but hopefully longer than that. In short, it means everything.
It also means he no longer has nephrotic syndrome which carries a significant risk of serious infection and a too-high mortality rate for my liking. Not being nephrotic may also mean he starts to feel a bit better in himself and have a bit more energy. I might get my little boy back….
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Ciclosporin carries a 7% risk of causing lymphoma. So you could attempt to treat the kidney disease and end up with cancer. It’s a Hobson’s choice, isn’t it? (Or more accurately a Morton’s fork, but you know what I mean.) We weren’t really given a chance to decline the drug but we are more than a little relieved that putting William in this danger (and lymphoma is only one of a number of potentially serious side effects - squamous cell skin cancer is another) appears to be paying off.
We will never stop worrying and there will never be a light at the end of the tunnel as far as his health is concerned but for now this is as much as we can hope for.
Now just need to get his pesky sky-high blood pressure under control.
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It’s always a difficult balance between the effectiveness of a drug and its potential side effects. Sounds like it’s going well, though, which is wonderful. Must be very reassuring. Hope it keeps looking this positive!
I’m glad it seems to be working.