Day 56

This week has been a tough one.

Last Friday I mentioned Shane had GVHD of the skin again. What we didn't know was how bad it could get. Remember that this is not a new experience for Shane, he had this in the early stages following his transplant. The differences this time around are:
a) This time Shane was at home, not in the hospital with a bunch of Drs and nurses at his beck and call.
b) Last time Shane was well doped up on pain meds from his sore mouth and throat.
c) Last time it didn't hurt or itch, despite it looking awful.
d) Last time Shane was treated immediately with high dose steroids, so it only looked mean and nasty for a day or two.
e) Last time Shane was in a well air-conditioned hospital room that wasn't at the mercy of the elements.

This experience was very different.

It occurred because the Drs have been gradually reducing Shane's steroids. The problem with steroids is that you can't stay on them for too long as they have really bad side effects in the long term (which aren't as bad as GVHD, so keep that in mind). So they were unable to increase the steroids to treat it, so they started a new immunosuppresant, which takes 7-10 days to come into effect.

As you could imagine, this rash was red, raw and itchy. Whenever Shane moved, even the tiniest amount of sweat would send him into an itching frenzy. Being cool, and staying still was his best defence. So, for the last week or so, he hasn't moved from the lounge, except for trips to hospital.

The worst part was the pain. It took us completely by surprise. I never really thought about how a rash could cause pain - except in the case of sunburn, or open wounds. This rash produced sharp, piercing pains all over Shane's body whenever he moved. This pain occurred in places where his rash wasn't too bad, which had us really baffled.  

This GVHD of the skin wasn't even considered a severe case. Eeek!

So our weekend was absolutely miserable. We were stuck in a limbo of the unknown. It didn't seem severe enough to go back to hospital, but the discomfort on Shane's part was unbearable to watch.

By Monday though, the rash virtually disappeared. The new immunosuppresant must have kicked in just in time. However, even though the rash wasn't obvious, the pain and discomfort were still present. Fortunately this has been subsiding the last few days.

Before the transplant, the Drs said that they gradually reduce the immunosuppression until he's off it completely. This process usually takes 6-9months. Its amazing to even think that Shane would be able to live without it! But this week has made me realise that there are going to be many more weeks like this one as the medication is gradually reduced. Even though the first 100 days are very crucial, Shane won't be "better" straight afterwards. It will take years before Shane recovers.

xx