Firstly apologies for keep banging on about this but it's been rumbling along now for a while and some folk are kindly asking how things are going so I'll keep updating for the interested.
Yesterday I saw the top people in this area at the Royal Brompton in London, which I've had to set up as Sheffield has washed their hands of me and brushed me under the carpet hoping I'll go away as they have zero idea what to do, despite the fact the paralysis was done on their slab and the fact I can find the best people to speak to and sort out a meeting with referral help from my GP and they can't just speaks volumes. Anyway that's another issue.
Breathing tests showed a very poor level of capacity, along with a sniff test which shows a continuing zero level of movement in the right diaphragm after 6 months now. However they are saying that at this high level of phrenic nerve paralysis I need to give it another 18-24 months for any recovery to start. 3 years is a worst case cut off point at which time if there hasn't been any signs of recovery then there won't be any. Treatment in this case is simple, there isn't any, all they can do is plication, which means pulling the diaphragm down and pinning it which will hold the right lung at full stretch, it won't ever move again or give much improvement but it stops the lung being squashed and prone to infection and will allow as much oxygen transfer as possible. At the moment the lung is pushed up and being squashed by the elevated diaphragm, much like a squashed sponge. Pinning it is not reversible so if there is a breakthrough a few years down the line i won't be able to have it, so I need to know all the risks in leaving it squashed first, although these guys have been doing a research programme and so far they don't see any developments in any treatment due to the nature of phrenic nerve paralysis, and are saying plication is the only sensible option if we come to that. They can't tell me yet if I'd be on oxygen for life, that would only become apparent after plication. They also want to do a sleep test to see if there are any underlying issues and to see if a respirator will help me get some better quality sleep.
All that paints a bad picture and is entirely possible but then so is a recovery, we just won't know for another 2 years or so. On the plus side they have answered a lot of questions I had, so at least I know more now. The down side is there's another 2 years wait on 24/7 oxygen which is not only impacts me but my family as well, mostly my son who at 10 is wanting to do more with me out and about and I simply can't do it, I can't take him cycling or walking or swimming etc, it's such a shame, but he's very understanding, which in a way makes it worse as I feel so sorry for him. But he's got mates and does a lot elsewhere, so he'll be fine but it's far from what I wanted for him, we have a very very good relationship and he's leaning towards me now rather than his mum as he grows out of young childhood.
So I'm quite frankly scared, worried and yet optimistic all rolled into one big mess, but as I've said before it really could be hell of a lot worse even in the worst case scenario, that's not to sound like a martyr or anything, but you look around and see so much tradedgy elsewhere, proper grief, and I may well yet recover, let's hope so.
Cheers for reading, I won't bang on again about this now until there's an outcome so breathe easy chaps...
I know I talk rubbish, tell awful jokes on here but your support truly means a lot, I honestly feel like I've made some friends here.
