Tuesday, 18 October 2016
What a Difference a Day Makes
Sailing through October and I've been steadily embarking on the first few weeks of my fourth year post transplant. I'd been feeling fighting fit - well very fit. I'd just arrived back from a holiday in Whitstable, where we've walked miles every day in the fresh sea air and autumn sunshine. It'd been a whirl of wonderful times - I was cycling around a park in the middle of the Danube River in Budapest only the week before, laughing, happy and carefree.
What happened? I'm in shock more than anything. I try and trace things back a little. Why did I not spot the signs? Should I have worried when I didn't?
One of the things about being a transplant patient is that you have to monitor yourself and note down daily observations. It can become a little tiresome over time doing this everyday as the years go by. I know some people give up on it, knowing they know their bodies well enough if something is amiss. I feel a little like doing this at times, so admittedly I don't managed to keep up every day, but I do ensure I take a run of recordings every week. I take just enough to check in each week, reassure myself of what is my normal - it's that standard to look back on if things don't feel right. It gives me evidence for the doctors. I can sit and tell a GP, 'But my temperature's elevated at 37 - it's been 36.4 for three years
every day until now!' I make the effort to try and do it, as it makes sense that you may spot something untoward happening. My observations had all been fine - an odd statistic now and again - maybe a random temperature of 37, but no steady pattern; maybe an odd low lung function test, but I'm not the greatest with lung function technique. There were no observations throwing up alarming signals.
I always have a cough. I have had the cough since my transplant. It stems from a join that healed in a funny way after my operation, it causes me to have to clear my lungs each day. I might have said a few times on our walks recently that I feel like I'm coughing a little more. But the air has gone suddenly colder, there'd been a cold wind blowing and I put it down to that, especially when I'd been walking along a chilly seafront early in the morning during normal prime coughing time. I can't really put a finger on it that it was getting worse, perhaps just marginally worse as I've felt the need to mention it. And then I recall mentioning an odd moment of breathlessness once of twice - clambering up a steep slope from the sea front to the flat terraces above with the wind in my face. Rob says, 'I'm breathless too, if you hadn't stopped for a minute, then I would have.' Similar thing again, this time being pulled up a hill by Ted at Wimpole Hall two days before my clinic appointment. I'd stopped and caught my breath, there had been a cold wind and I was a bit tired after already walking a good few miles. Nothing to worry, I put it out of my mind as soon as it's flashed into it.
After Wimpole I'd woken in the night. I've kept having a tingle in my neck that shoots up my face to my ear. This night it's aching and feels stronger than normal, like my glands are swollen up or something. It's been doing this on and off from summer, but this feels more. Much worse. 'Should I phone for an appointment with the GP?' 'Will they just stand and stare at me?' 'What's is she on about - a tingle in her face?' 'Should I phone clinic?' 'But I'm there in another day,' I think. I decided to wait and see, if it becomes worse I'd phone the GP in the morning. It disappears and goes. Worry sorted. I might mention it at clinic, but then I don't want to seem like I'm a paronoid, self-obsessed transplant patient, so I might not.
I jump in the car to go to clinic. I feel strong and well. Healthy. I say to Rob, 'I don't think I'll mention any of these silly little things. What will they say? Well they'll probably laugh at the tingling face bit; they'll probably say of course you might be a bit breathless climbing up steep hills with a dog pulling you on the lead with a cold wind on your face!'
I've already mentioned to them about feeling fatigued and having to pace myself more, we've already discussed this at clinics and put it down to all the problems and ups and down that have gone on during the year following the serious attack of CMV virus at Christmas and all the medication tweaks that have come with it over the year. That's been an ongoing and continuous issue to keep the CMV virus at bay and having to pace myself and becoming fatigued was part of the course.
I felt breathless walking up the incline leading to clinic with a friend. Arriving in clinic I needed to sit down straight away. I'd no breath left. I sit there and think, 'Did that really happen? Did I actually lose my breath? Did I have no control on my breathing?' I recovered myself, sat and chatted with friends, had my tests done, felt fine. I think to myself, 'I'll just mention all things niggling things after all. I don't like what happened earlier.'
I see the consultant and we chat about how I am - I'm a bit reserved at first about the mismatch of what feels like 'nothings' going on. He turns and points to my lung X- ray. They are there, as always, my new lungs staring down from the computer screen and he tells me he's noticed some marked differences since my last X-ray. Things he's concerned about. I rattle off all those little nuances and nothings. I listen in surprise as I'm told I'm being admitted into hospital immediately and tests will be done straight away. It's all a shock - the swiftness of how this is all moving.
Five days and numerous tests later, I return home a completely different person. I'd climbed in the car on Thursday morning thinking of myself as fighting fit and perhaps needing a little reassurance like all us transplant patients do when we visit clinic. I returned back home with the dreaded diagnosis of that 'R' word hanging over me. Rejection in my beautiful borrowed lungs. The 'R' word. And not only that, but there's another problem diagnosed in both lungs too, which needs specific treatment. Basically I'm not what I thought.
So here I am home and we're catching our breath as a family. It's a wait and see the response to new medications. It's a wait and see the response to generously increased medications. It's a wait and see response to high doses of steroids. While I wait, I go back to those old tricks of recovery - things I do each day really anyway, but during times like this they come with a new intensity. They're tried and tested and with a fair wind can help work alongside the medications. Rest. Recuperation. Good diet. Excercise - well at least moving around within my limits as they are at the moment. Keeping the mind busy. Focus and resolve to fight, survive and overcome.
Most of all, it's small positive steps, just one at a time each day to face whatever is happening on that particular day, be it for better or worse. It's better to tackle those than worry about the 'what ifs' that may never happen anyway. Just little steps. Little daily tasks. Small and positive accomplishments as we wait and see what unfolds next.
The big positive at the moment is there is still hope - much of it - that things may be better again, even though I've been advised it's all going to take time whichever way things swing - they still might be better again if I am lucky.
What a difference a day makes. Fortunately for me it was a day when I just happened to be in the right place at the right time and fortunately the problems as they are forseen are being treated for now. I'm thankful for that, hopeful for this coming year still and always grateful for the extra wonderful years and time that I've been blessed with already.