My Allograft 2018/19 – 30. 14th September 2019
By Andy Burrows, 14 September 2019
I finally made it home on Wednesday (11th Sept). I didn’t make a big deal over it on the day, given what happened the last couple of times I was due to be discharged!
That’s one full month in hospital (plus struggling for the month before that) because of an infection no one ever really got to the bottom of!
Such was the exhaustiveness of the testing that had already been done, the last few days really involved closing the loop on a few discussions and deciding how to move on.
The CT scan they did on Friday 6th was clear, ruling out sinusitis.
There was a recommendation from somewhere (the microbiology team I think) that the antibiotic Teicoplanin be continued an additional 5 days (up to Tuesday evening). And it gave me no problems (unlike Vancomycin).
I continued to push my theory of a respiratory infection that was being stirred up by various irritations such as pentamidine nebulisers.
And because my symptoms the previous Wednesday were back under control very quickly, I was allowed “day leave” from Saturday onwards. That meant that I could come home after everything was done each day in the morning (normally the last thing was the doctor’s ward round), as long as I got back in the evening in time for my medication and IV antibiotics.
On Tuesday, I felt like I should try to get Southampton and Basingstoke doctors into more thorough consultation (why should I have to do this, you might ask! All I’ll say is that long experience in management tells me that human nature sometimes leads to inertia in these things and you sometimes need to gently force conversations to happen!).
And my call to the nurse specialist in Southampton turned out to be well-timed. She was already seeking information so that they could have a discussion about me in their weekly meeting that afternoon. And she promised to email/speak to the Basingstoke doctors after that.
I then also asked the registrar on the ward in Basingstoke to send all the remaining questions and updates to Southampton.
The result was perfect alignment by the end of the day, at least by email, which the registrar told me about on Wednesday morning (and I cross-checked with a call to Southampton just to be sure).
They decided I could go home, but that I should replace the monthly pentamidine nebulisers with regular pills, and that I should continue a course of oral antibiotics for a further week.
The pentamidine nebuliser is a prophylactic (preventative) antibiotic aimed at preventing a particular deadly (to immunosuppressed people) type of pneumonia they used to refer to as PCP. The reason they prefer nebulisers under normal circumstances is because the pills can affect blood cell levels, which is not what they want when they’re trying to encourage the engraftment of the donor bone marrow and blood cells.
In my case, they decided that my blood counts were doing fine, and therefore why keep stirring up one form of chest infection in trying to prevent another?!
I suppose we’d all got to the stage where, by process of elimination, rather than positive confirmation, there was acceptance that the infection is in my chest. No tests are showing it up positively and unequivocally (although I guess you could say there are still those inconclusive indications on the PET CT scan and bronchoscopy). And I certainly feel that way.
They also addressed my question of my cyclosporine (immunosuppressant drug) dose. The plan, before the infections of the last two months, had been to gradually come off the cyclosporine over a period of weeks, trying to avoid GvHD along the way.
Even 3 months ago, I was already feeling like that reduction process had started late and was happening slowly. And because of my extended hospitalisation, my dose hadn’t been reduced in more than a month.
And in my mind, that was delaying my overall treatment and recovery (as well as keeping me immunosuppressed and therefore in danger of a vicious circle). There is still so much to go through which can’t happen until after I’m off those drugs and my new immune system is allowed to start developing uninhibited.
I actually now don’t know where I am in terms of expected timings.
I finally climbed into my own bed on Wednesday feeling a little weird and very tired.
If you were to ask me right now how I feel after this whole episode (assuming that I’m not speaking too soon!), I’d probably say humbled.
And I don’t mean humbled in the sense of flattered, like when people call me inspirational or brave or strong, and I don’t understand it because I don’t see myself that way…
I mean humbled in the sense of ‘taken down a peg or two’. Humbled like George Foreman after fighting Muhammad Ali. Or a bit like former-SAS and TV hard-man Ant Middleton’s comment on his brush with death on the summit of Mount Everest: “Mother Nature sort of grabbed hold of me, pulled my pants down, gave me a good hiding and went ‘You go on your way, little boy’”
Humbled physically and (hopefully) humbled in character.
What the last two months of infections has taken out of me feels like more than two months of physical progress, though time will tell whether that’s a pessimistic feeling.
I hobble and wobble, with legs, back and arms that stiffen up after only an hour or two of ordinary use (actually at the moment, to be honest, my limbs are constantly stiff). I’m often a little (sometimes very) lightheaded in standing up, breathless in climbing stairs and feel very tired very quickly.
It’s early days. It may not be as bad as I feel at the moment. I just need to be patient, listen to my body (I mean like when it’s telling me to stop or slow down) and just keep going as and when I can. At some stage I’ll be able to add some real exercise. But at the moment, just carrying on and trying not to overdo things too much is what I have to do.
The mental challenge is that it involves long periods of doing nothing, just making the most of chances to recover physically. And often that means doing literally nothing, when I’m too tired to concentrate on a book and fall asleep with the TV on. Nothing but pondering stuff.
Humbling for a guy who would pride himself on using time effectively, even time in hospital and off sick, and now has to let go and accept I can’t be productive all the time.
I think it’s probably unfair to say that I feel like I’m having to let life go on around me, while I’m sitting doing nothing. I have done a few bits and pieces around the place. But generally, I watch the rest of the family going out to work and college, walk dogs, do a Uni application, job applications, talk of booking holidays (the boys) and gap years; I see friends going on holiday on Facebook, I see new jobs, or even just continued employment, friends my age talking of retirement even… and I chip in with chat and advice/opinion for the kids and anyone who happens to be around, and do insignificant bits and pieces around the house, but often don’t feel like a “net contributor”.
Darn it, I can’t even stand the fact that that sounds so negative. I know that just the fact that I can talk about what I’ve learnt and what I’m learning, and that I mostly still have the strength quite often to do that, is something that could be a real blessing if it falls on the ears of someone who really needs it.
And that does warm my heart as I float along.
But hopefully this episode has also given me another character lesson in humility. Do I have the humility to recognise how little control I have over big things that impact my life? How does that recognition make me feel? Does it make me feel anxious? Or am I kind of happily intrigued, like Tom Hanks’ character at the end of the movie Cast Away, to see “what the tide may bring”?
Don’t worry. I’m not “out for the count”. I’m not despondent. I may sometimes look a little deflated, but the pain aspects tend to do that.
I’m just biding my time, giving myself a little time right now to readjust and refocus, working out the right timing and level to physically push myself.
I have currently dispensed with all targets and timescales. I don’t know whether I’m 6 months or a year or two years away from having a reasonable immune system, and being able to reintegrate into “normal” life.
It’s a funny change in mindset. “One step at a time” feels different when you are doing it within an overall plan with an expected timescale.
Now, my mindset is “one step at a time, as long as it takes, I’ll get there eventually… it doesn’t matter when”.