A Journey to death’s door and back again
Firstly I’d like to apologise for the extended period without posting to my blog. I am more than delighted to announce that as of December 7th I am now the humble recipient of a pair of transplanted lungs, courtesy of an anonymous donor and a wonderful team of clinicians at the Freeman Hospital in Newcastle.
I was declining fast towards the end of last year and the consensus was that without the surgery I probably wouldn’t have made it past January. This is by way of an overview of events since that fateful call but my blogs following this one will go into much more detail about the experience, for those who are interested.
Clearly the fact that I’m alive and able to write this fills me with gratitude beyond words, but there were complications which brought me to within an inch of my life on more than one occasion. My stay in hospital amounted to almost four months.
There is so much to tell it’s hard to know where to start, so I’m choosing a confusing thought I remember having when I got that morning call at 9.30am back in December and we’ll see where that gets us. Those of you who have followed my blog will know of course, that I’d previously had three unsuccessful calls for transplant in the previous months.
It’s difficult to admit, but for the briefest second when the phone rang that morning, there was an element of resentment towards this unexpected ‘intervention’. I suddenly realised that it would require me to leave the morbid, but increasingly responsibility free comfort zone that I had gradually been drawn into during the previous few months. That downward spiral towards the inevitable end was becoming a dominating feature of mine, and my family’s life.
IPF gradually robs us of the one thing we all need a piece of; hope. It creeps up gently, systematically closing down our expectations of life without us realising what’s happening. It’s that aspect I want to focus on because it’s a challenging but necessary conversation in the journey through end-stage IPF.
The way I countered the lack of hope was to go over in great detail all the regrets my early death would create and play them over and over in my mind so many times that I was sure there was nothing more to be gained from doing so again.
It may sound odd but it enabled me to block the thought out (of my early death) whenever I recognised it creeping into my mind, because if I didn’t it would likely result in a prolonged period of sorrowful emotions that would leave me feeling down for some time. I would then concentrate on replacing the space with more positive intentions and emotions.
Developing skills like this has enabled me to better manage my state of mind and to stay focused on enjoying the ‘here and now’. The notion of being told I have much less time to live than I was expecting and then spending those precious days feeling sorry for myself didn’t strike me as a good idea. Believe me, having been right to the edge and made it back, I assure you that now is the time to consider your mortality, not then.
In the early days of my involvement with Newcastle, talk was of a single lung transplant due to how my more diseased left lung appeared on scans. The thought was that it would be more trouble than it was worth to replace.
I was pleasantly surprised to hear that I’d received a double transplant and especially grateful as it seems the job of removing the old lungs proved much more troublesome, even than had been originally expected. Indeed these difficulties and excessive bleeding put me in severe danger of not surviving the procedure. The trauma would later take its toll.
All seemed in order until Day 12 when I started noticing my breathing becoming more laboured. At first I ignored it, putting it down to being laid in the same position for too long, but it persisted and gradually worsened. It became clear to me that something serious was going on, but I was strangely hesitant to ask for help. I was torn because in my mind there was a good chance that asking for help might prove to be the last thing I ever did.
I’d undergone a huge and risky operation that hadn’t gone well and I now seemed to be heading for some serious post-operative complications. By my reckoning that put me on rather thin ice; and it was a rare occasion when Jackie wasn’t at my side. I remember eventually giving in and yelling “I can’t breathe!” over and over and then the light being obscured by medics around the bed as they rushed to my attention. Unsure of the immediate events that followed, my only recollection is of being very aware that I was on the bridge between life and death.
I was determined not to allow myself to drift into self-pity or fear. The idea of lying there with a head full of regrets or feeling bad about the loved ones I would miss, was a feature of my early diagnosis with IPF. I had long since realised that nothing apart from misery ever came from the exercise. Despite that; the realisation I might actually be about to die took me a while to absorb. This realisation happened a couple of times; each was the result of a marked decline in my ability to breathe mixed with clear and prolonged concern on the faces of the consultants who attended me.
A lot of people don’t make it through transplants, why shouldn’t I be one of them? It all seemed quite a distance from that simple act of agreeing the risks and signing the consent form.
Life carried on outside hospital and late last summer we were delighted by the news that our youngest son Phil and his wife Catriona were expecting our first grandson. My delight was tempered by the realisation that I was unlikely to make his March 2017 arrival date and I sensed that we all felt the same.
I will leave you with the task of trying to quantify the anticipation and emotion I felt as we drove to London this last week, with a tear in my eye at the prospect of actually holding him in my arms for the first time. Pure magic, made more so by my second rather difficult to admit realisation that at the time of the call I was so wrapped up in managing my disease that I’d momentarily forgotten that I was even on the transplant list.
God bless donors and physicians everywhere…life’s good.
The next blogs include a simply devastating outcome to the whole process that I didn’t see coming, some useful thoughts for anyone awaiting the call and a few of the lighter moments that made the tough days seem more bearable.
I’ll be back shortly.