Was back at Harefield today for my first clinic flying solo. Up to now I’ve been along with Mum or Dad and maybe K in tow, too, but now I’m more mobile and – more to the point – can drive myself comfortably for an hour or more (just), I can finally let Ma and Pa go about their usual daily business. In other words, they have to stop skiving off work to run me to the hossie.
What was even better about today (barring all the medical stuff, which I’ll come to in a bit) was that after our experiment with popping into Town last week, I took myself off on the train after the morning tests and got to have lunch with a really old school mate, who’s working for a record label near Archway. It was brilliant to see him and catch up – both of us feeling really happy about our lot in life at the moment, which not only makes a change (for me, anyway) but makes for a refreshingly up-beat and happy little luncheon.
Back at the big H, I saw the main man himself for the first time in a few weeks, which apparently worried him, because you only normally get passed to him if there’s something wrong.
As it happens, there’s not – he’s even given me such a clean(ish) bill of health I don’t have to go back for four weeks(!), barring unseen complications on my part. It’s amazing to think that just 3 months post-transplant, I’m already in a place where my docs are happy for me to stay away for such a prolonged period of time.
The down-side to it is that my lung-function doesn’t appear to be following the usually predicted improvement curve that he would be expecting to see at this stage. Whether this is left-overs from the Organising Pneumonia or signs of something potentially more sinister, he’s not sure.
The big issue with the O.P. is that it can take a long time to resolve (hence the 6 weeks of high-dose oral steroids I’m on at the moment), which means it’s pretty hard to detect if there’s anything else happening. The good news is that the biopsy from my bronch a couple of weeks ago is definitely negative for any signs of rejection and there is also very little or no sign of infection, which are the two main dangers right now.
More likely than not, the plateau in my lung function is a by-product of the O.P. and as that clears up over the next few weeks, my lung function should start to creep back up towards the predicted curve that they would hope and expect to see. Going to the gym and getting more exercise, putting weight on and generally getting stronger should all help that. Since it’s a bit of a waiting game to see how it progresses, that’s why they are happy for me to head off until the steroid course finishes and they can have a proper look to see if everything’s resolved.
For the time being, he’s kept me on some oral antibiotics and added in a second immunosuppressant to try to discourage rejection should there be any lurking or even thinking about having a bit of a lurk. It does make me mildly more susceptible to colds and infections and things, but not to such a degree that it should mess with too many of my plans. The main thing is I can still go to the movies…
All in all – beyond the slight concerns over the plateau – it’s been a good day hossie-wise. In terms of independence and self-confidence, it’s been even better. For the first time since my transplant, I really feel like I’m fending for myself and reaching a level of true independence and it feels amazing. I’ve not known this kind of freedom for a really long time and boy is it good to have it back.
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- Nope, we got nada!