Turbulant times...

This has taken days to write, not because it's hard to write... well maybe it is, I don't know but it's just like the words won't come or my brain just can't be bothered to go over it again but hey ho hopefully I can get through it all at least and we'll see how we go.

So last we left off I had just had a clinic appointment and we had lots of plans for the Friday and would leave Hospital on that Saturday. That did not go to plan.

At the clinic on the Wednesday they had discovered a shadow on my x-ray that they just weren't sure what it was it could have been a rib or it could have been a cavity or it could have been nothing. On the Thursday they had gotten previous x-rays together and seen the gradual build up of this shadow which ultimately determined that it was a cavity and my Dr was sure with all the other evidence it was a cavity full of an infection called Aspergillis. Now essentially the infection itself isn't a problem if it had just been that we would have been fine, what the problem is, is where the cavity is located in my lung, that is the problem. It's located just under my collar bone near my throat, so essentially very close to the surface and apparently somewhere that is routinely torn during surgery. The consultants are reaching the point where they think it's one risk too many.

So after that little bombshell I was told that I had to be suspended on the list whilst we attempt to get rid of this cavity. We've started me on some antifungals and some antibiotic nebulisers and I'm now officially up to 21 different meds a day LOL. In a way it's great that they found this cavity before I got my transplant because it would have been awful to have gotten a call and then be put under and for it to be discovered in that situation. The problem we now have is that some surgeons potential may not like the idea of doing the surgery at all because the Doctors tell me that Aspergillis doesn't ever just go it leaves like an "imprint" and the way me and Sarah imagined that was like a mouldy bathroom ceiling the mould is gone but you can still see it. So that is making a few people just a bit iffy about the whole situation.

So whilst I was in hospital and we were trying to sort out a bunch of my blood levels and just adjust to my new medications they had they transplant meeting which they always have on a Wednesday and discussed me and my situation. Ultimately the result came back that the surgeons said they were confident that they could perform and do the operation, which is super reassuring and great news, however a few consultants are kind of on the fence, they're worried transplant might just be a bad move and think I could potentially get more out of life if I can stay stable and therefore would prefer not to do the transplant whether I can get rid of the Aspergillus or not. This is all fine I need as many opinions as I can get both the positive and the negative. Personally I still want the transplant, I trust the surgeons at Papworth so I believe if they say they can do it, they can! If they had said a outright no I would have fought back but luckily they all agreed to wait and see if I can decrease the size of it or get rid of it completely. So in 5 weeks now I will have another CT to see whether it's going away or decreasing.

Ultimately I believe this should be my decision as they've already agreed to doing a operation with unquantifiable risks this infection doesn't make it any more unquantifiable. It's not going from 90% chance you live to 40% it's literally "we don't know if you'll die" "we don't know if you'll die even more." I'm lucky I still have decisions though even if they are crap decisions but ultimately the way I'd prefer to die anyway would be during an operation where I'm completely unaware not slowly and painful fully aware of what's going on and being unable to do anything about it.

I'm home now thankfully and only had to stay at Papworth for a week but I now have a long regime or nebulisers and physio that I have to do now because I really have to shift this stuff in my chest but I think it's going now so I'm excited to get on and doing stuff, I refuse to let this little setback stop me from doing things. I just have to really pay attention to myself and look after myself. I'm determined that I will survive and luckily I've not been proved wrong yet :)

As always, thank-you for reading and chat soon

1 comment:

  1. I love how matter of fact you are about life and death and I just wish something would go right for you x


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