I am mindful that, as I post this, there are many people not as fortunate as me, having received a liver transplant.
I was finally deemed ready for discharge home on day 12, after some fine tuning of tacrolimus levels and a phosphate infusion. A low phosphate was thought to be contributing a tremor in my hands, which is frequently seen in patients in the initial stages of tacrolimus treatment. “Tacro tremor” if you will. A bit frustrating, but I am assured that it passes as time goes on.
I walked to the front entrance to wait for my wife to collect me from the front door of the hospital. People say the oddest of things at times such as these, as I reflected on the parting words of one of the catering staff , “Good luck! See you soon!”. The luck I will take, but not the bit about being seen soon.
It was grey and overcast, with the first hint in the air of autumn. But it felt so fresh and invigorating after the stifling heat of the ward. I sat drinking in the change of scene. Pretty desperate when the drop-off and pick-up area of a major teaching hospital is a bit of a novelty, but it was.
Finally, I gingerly manoeuvred myself into the front passenger seat, secured the seat belt across a very padded jacket, and we set off. British roads I now realise are a series of potholes and speed bumps held together by a lace work of tarmac. The expressions in the car got a bit fruity as my scar let me know it was far from healed. Eventually I kind of braced myself with my feet and back, which helped somewhat. I mused that perhaps I could become the author of a book entitled “A Drivers Atlas of British Potholes and Speed Bumps.” Maybe not.
We turned into our road and parked in front of our house. I paused for a few minutes just taking in the familiarity of it all, then went inside.
I initially felt elated to be home, but this soon gave way to a profound fatigue, as I had not really had a proper night’s sleep in nearly two weeks. I went to bed and slept soundly for several hours, between freshly laundered sheets and pillowcases.
I awoke and immediately became aware of my new soundscape away from the ward. I lay listening to the sound of birds, the muffled rumble of traffic noise and the occasional jet aircraft passing high overhead. A far cry from ward alarms, jingling keys on drugs rounds, and the groans of my fellow inmates at varying stages of post- operative recovery. Then I was aware of a new smell. Onions! My wife was cooking my requested meal – a good flavoursome chilli! Again, it was so good to be aware of that familiar aroma once again as opposed to cooked ward food served from a warming trolley, although the hospital food was not too bad. But not as good as that chilli!
Monuments are important to people as they mark our passage through life, and ultimately are witness to our having once lived a life. I felt that I had to mark my first day home in some way, so that in years to come I would have something tangible and durable to see and /or touch that reminded me of my journey following transplant. For some this could be an object that you see or use every day, or something you write down in a diary or journal, or even the view from a window that has special meaning for you. In the end for me it was a Japanese steel forged kitchen knife! Something durable, that I would use virtually every day, and could be passed in due course to my sons and grandchildren as a reminder of me and my journey.
As to the liver transplant, I am astonished and stand in humble awe at the ability of the human body, albeit with the intervention of modern medicine, to recover from such a dire initial position. As I type this, my liver function is back to normal (!), and I now realise how ill I was gradually becoming in the weeks leading up to the transplant. As an aside my wife met a couple of acquaintances whilst out walking our dogs as I slept. It transpired that the grandmother of one of them had a liver transplant 30 years ago and is now in her 90’s! My father had also found a friend whom he never knew had had a liver transplant 20 years ago and showed no evidence whatsoever of any issues. He was in his 80’s. The owner of our kennels had an uncle who underwent a transplant in his early 60’s and has spent the last decade travelling far and wide! I think you can see my point.
At present, I am still in the early stages of recovery. I explained to my wife that it was as if I undergone a metamorphosis, much like a butterfly. I had entered a dark silent chamber of the operation, oblivious of the outside world, but still me, to emerge from that cocoon changed forever. I am now at the stage when the Monarch butterfly waits patiently on a twig or blade of grass, letting the strength and vitality course through it veins as its wings expand and it finally takes flight. Like Monarch’s we can at least try to take control of those things we can control at a time when we may feel controlled by circumstances. This might be forming a routine as soon as possible, or developing positive habits that help us best care for the wonderous gift we have received.
The Monarch migrates thousands of miles from North to Central America, an awesome feat of navigation and endurance, to reach a specific grove of trees in the Mexican mountains. How it does so is a mystery.
I hope and pray that as many of us as possible will one day spread our wings and soar high, seeing and appreciating life and the world around as we have never done before. My best wishes to you all, wherever you are on your journey.
To be continued.
