Things are tough at the moment. My lung is persistently misbehaving – not only is it refusing to come up, and sitting about 1/3 of the way down in a fairly deflatey and obstinate manner but I am getting slightly more symptomatic, although these symptoms seem to appear at the most unhelpful time such as 8pm at the weekend, so that my consultant has to trek all the way in (which to her credit she does) and then said symptoms seem much reduced again come the morning when all the doctors are there fresh-faced and ready to tackle things in actual daylight.
The bottom line is that 5 days on, there has been no improvement. This means that the only option left will be a drain. the sooner the drain goes in the better, as the longer the lung is down the harder it is to encourage it to reinflate, due to it’s now cardboard like properties as opposed to nice stretchy elastic behaviour that healthy lungs exhibit. They want to hold off putting the drain in overnight or at the weekend as they want the top dog (not sure what their real title is) to do it under CT guidance due to the air pocket’s tricky location, so hopefully we are on hold till tomorrow. Unfortunately due to said persistent naughty behaviour (of lung not me) I am now confined to my room and not allowed to do any exercise (not even allowed to do physio properly!!) to try and keep it as stable as possible. Whilst one might imagine enjoying the freedom of not having to work on lung fitness I am finding this quite unsettling; I am desperate to keep whatever stretch and reserve I have in my lungs and so even 48 hours is not fun as it feels like I am just letting things degenerate, although obviously this is not the case as they are monitoring me carefully and it’s a very short period of time.
When the team came to talk to me this morning, my doctor said that she was very aware I need a life outside these walls. But herein lies the problem – to ensure that this lung “sticks” and does not come down, there are a number of options, the most successful being gluing. The aforementioned however, along with a few others would prove a contraindication to transplant. She asked me outright if I would like this done and explained that many patients by now would be saying “ok enough is enough I need my life back now do what it takes”. So two choices laid at my door, do I chose a “get out of hospital now” card and put an end to my lung collapsing escapades, but on doing that close a potential future portal, or do I ride it out, putting my hopes in the transplant basket as it were? Do I wish I had a crystal ball, and would knowing what the future holds actually make things any easier?
The thing is, it wasn’t really a choice I had to make. The gluing isn’t for me. Knowledge isn’t what makes the future easier for me, but hope does. Transplant is my eventual goal and aim, it is a long term “improvement” which I am fighting for, and when at my worst, hanging on for. Whilst I am fully aware it is a target I might not attain, I need it as a guide light for when things get tough. I don’t want that taken away. The team readily agreed that vetoing gluing is the right option for me, but wanted to ensure they are offering me every possible route. So it looks like we shall be proceeding with a second anterior drain, but my doctor is going to talk through some other possibilities with the transplant team to make my lung stick that little bit more, but to keep the balance so it doesn’t interfere with potential transplant. I have been feeling quite down and scared of this drain, as the previous anterior one was such an unpleasant experience, but have just had a very reassuring chat with a physio (see support work, councillor, they do it all!) about much more attention to pain management and control, so I am going to go into it with the thought that it wont be anything like the last one.
On a lighter note, not only did I manage to get out for a picnic with A yesterday day (which was just gorgeous) before lung started mucking about again, but then my mother came up to stay the night as I was sporting a somewhat pouty face, which she promptly managed to eradicate by bringing a sense of normality back. She arrived in a loud and blustery manner, went searching for a video and came back gleefully clutching “Chitty Chitty Bang Bang” (which as we started watching I realised isn’t quite the seamlessly edited and tightly constructed narrative my childhood memories would have me believe). Sense of normality continued on to this morning, when she woke me up at about 8am “just to check” what time breakfast should be served, in case by some dire misfortune I (and by that she meant she) had been missed out. What would I do without her…
2 weeks ago