A Telephone Call, Like No Other
Our phone hasn’t rung at 06:15am for years, it did so on 26th May 2016, and for a very good reason.
The softly spoken, lyrical and friendly Geordie accent that greeted me, immediately confirmed my hopeful suspicions. “We’d like you to make your way up here for about 9:30 to 10:00am, we’ve a suitable donor for you.” It was my lung transplant coordinator at the Freeman Hospital Newcastle, and it was instantly apparent that this would become a day like no other.
This was indeed the call we’d been hoping and praying for, however my attention strangely wandered from the information I was being given, to the immediate risks and practical challenges that would result. If you’ve not been in the position of waiting for a lung transplant it’s perhaps best that I take you through some background info.
Before I was ill, I initially thought a transplant would be comparable to changing a major part of a car engine. You know how it goes; the car’s not behaving so you take it to the garage, they tell you it’s serious and it’ll be a while until the parts come. It will be expensive and result in it being off the road, still once it’s done that’s it, good as new and you can forget about it . . . au contraire: Getting on the list is a challenge; age and medical history are just two of the many potential constraints. 20% 30% of those on the list die without ever receiving a transplant.
There were only 188 lung transplants in England last year.
Around 20% go to IPF patients; so that’s about 36. That’s not even one a week and means that less than 1% of the 5,300 diagnosed each year will be transplanted.
The other 99% will die of the disease.
For those who get the operation the prognosis is as follows: 61% live 5 years and 41% reach 10 years. The path is littered with risks but it certainly beats the alternative.
Now, statistics are one thing when they’re sat on a piece of paper, but that telephone call did two things, firstly it lifted the stats from the page and presented them in very sharp focus right before my eyes, and secondly it transformed me, the reader, into a ‘real life’ piece of data.
I had suddenly become part of this game of chance, I had surrendered my future to a system that I had no control over. The clock was now ticking and my only role was to do exactly as I was told.
It was as if I had been put on a conveyor belt of hope, which would carefully transport me through the various stages necessary to reach my vision of once more standing, respectably out of breath, having walked again with Jackie some of our cherished Cumbrian ascents.
The first surprise, and I have to say slight disappointment, was the total lack of any sense of urgency at the hospital. I’d conjured this vision of me being whisked off my feet and hurtled down corridors, ‘CarryOn’ style, restrained on my speeding bed by a team of nurses as we crashed through swing doors, scattering unsuspecting medical staff at every turn.
None of it!
In fact for the first 45 minutes after being shown to my bed we were entirely uninterrupted.
Things began to pick up a bit and an MRSA swab test proved to be the beginning of a steady stream of much appreciated medical distractions. We were reminded on a few occasions that there could be nothing disclosed about the unfortunate donor, and that our wait was simply because the lungs have to be inspected once removed before their suitability can be assessed.
Pleasant and attentive at all times the team are great and go about their complex and challenging task with real professionalism. However that posed me with a challenge; I knew that soon I would be told one way or another whether the lungs were a good match, and crucially, whether I was going to theatre or not.
My task was to read the faces of any prospective messenger so I could prepare myself for the news. To be honest getting the ‘go ahead’ was the only outcome that would have freaked me out, because I’m mentally prepared for not getting a transplant, and have been for some years.
If that sounds pessimistic it isn’t, it’s just realistic. Being told I was heading for theatre would have taken me into the unknown, I would have then experienced a huge adrenalin rush as I would be officially authorised to mentally celebrate reaching a true milestone; a milestone beyond which would place me in entirely new and rather scary territory.
As it happened, (and no, I didn’t see it coming) when the well camouflaged sentence beginning “Unfortunately Mr. Gowland,” was eventually delivered, the only thing that changed was that my emotions switched back to how they were at 06:14am that morning, just before the call came. It seems the lungs weren’t ideal for me and they went to someone else, I was put back on very familiar ground. It was now just after 2:00pm.
We sat for a while with the coordinator as the disappointment was absorbed. The enormity of the missed opportunity began to slowly hover into view for me. It’s not that I wasn’t aware of it, just that I block such thoughts ordinarily as they tend to be dwelt upon and can lead to spells of feeling down. I figured today was worthy of an exception.
Our coordinator eventually said we could pack up and make our way home and expressed again how sorry they all were that it hadn’t worked out. Our minds shifted to the practicalities at hand while she was distracted by phone calls. After the disappointment it was a relief to focus on actually doing something, rather than sitting around speculating over what might have been. I recognised the very point at which my mind stopped thinking ‘transplant’ and re-engaged again with just being back on the waiting list.
It was only a matter of seconds after that very moment that I heard her say “Yes, I’m with him now.” followed by a pause before it was announced that the surgeon wanted to talk to me and was heading my way with news: A second donor had been identified, I was to be offered another pair of lungs. A sudden, rather romantic notion built that this could be one of the great stories, akin to a famous sporting comeback where the underdog wins the game after all had seemed lost, I was briefly imagining the joy, then adulthood regained control.
The path of this new found thread of hope was short as it was soon announced that the lungs were unfit for transplant and we were back to square one. In my mind the phrase ’emotional rollercoaster’ was termed for events far more mundane than this, yet my vocabulary could muster nothing more appropriate. I was about to leave it to your imagination to gauge just how mixed up our heads were, when the utter selfishness of my thinking hit me: That day two families and friends had lost thoughtful, caring loved ones with the foresight and compassion to think beyond their immediate needs, such that they would bequeath the ultimate gift, the gift of life.
I will never know who these fine people were but to have been on the receiving end of their generosity leaves me humbled and eternally grateful, even if those chances prove to be the only ones that ever come my way.
So, may I leave you with just one more statistic?
98% of us say we would gladly accept a donor organ to save our life, yet only 31% of us are registered as donors.
Now that doesn’t seem quite right to me, what say you?
More from Tony
Read Tony’s first blog post “I’d rather have cancer”.
Read Tony’s second blog post “My Journey with IPF, so far”.