GVHD Hell

Hi everyone

Since my last blog my GVHD has got a lot worse and it’s really getting on my nerves.  It’s really painful and itchy and I’m now having IV pain relief to try and keep me comfortable.

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The blood tests I had confirmed it wasn’t chicken pox and the doctors gave me some high dose steroids to try and stop the GVHD but they didn’t work.   Dr Gupte has worked really hard to get me some mesenchymal stem cells from London and I was given these yesterday.  Nobody really understands how they help but they have been effective in reducing GVHD before so hopefully they will help me.

The doctors were worried I might be too poorly to have my ECP in Rotherham this week but it was agreed I could go, so me, Mummy and a nurse called Chris who has looked after me lots went up by ambulance.  I was so tired I slept all the way there and through my treatment.  We came back with the flashy lights and nee naas but I slept through it all.

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In the ambulance on the way to Rotherham

On Thursday morning my right eye blistered really badly and the ophthalmologist reviewed me yesterday and the bad news is that the GVHD has spread to my eyes and I have scarring on my right eye.  I’m now having steroid eyedrops every 2 hours to try and stop it developing further as it could affect my sight.

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My poorly eye

So we now have to wait and hope the stem  cells start to work and quick because my skin is getting worse every day and it’s not much fun😭

Lots of love

Oliver

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