So a few years have passed since I wrote that first Scoliosis and Psychology blog, and quite a lot has changed. Last year I was diagnosed with Type 2 Respiratory Failure which is a reasonably common outcome later in life for those of us who had early onset Scoliosis.
Thankfully for me it wasn’t a sudden catastrophic event, with the consequences one might imagine when they hear the words “respiratory failure”. Rather it had crept up on me slowly over many years which allowed my body to compensate for it quite well. Basically, my body has learnt how to cope with the reduced oxygen saturation and elevated levels of CO2 in my blood.
The main issue I have is when I go to sleep, and specifically when I enter REM or dreaming sleep. During REM my breathing becomes increasingly shallow and my CO2 levels begin to rise. This usually results in me jolting awake, sometimes gasping for breath, or dealing with a persistent headache for the rest of the day. If left untreated it could eventually lead to permanent organ damage. To help me keep my oxygen and CO2 at safe levels I must now use a ventilator at night. But more about that later.
Before all of this, I had been worrying about my health for quite some time. After turning 30, I thought it was about time I upped my game and started taking better care of my body. So I decided to take up swimming.
I chose swimming for two main reasons. The first reason was for the health benefits obviously. But the second reason I think was just as important. I wanted to try and boost my own confidence and appreciation for the body I have and its scars.
It felt great to be back in the water, I used to love swimming as a child. However something wasn’t quite right. I kept turning a worrying shade of blue and it took me a long time to catch my breath after each length.
I shrugged this off at first as I already knew I had a restricted lung capacity because of the scoliosis. But there was a seed of worry at the back of my mind which eventually lead me to getting referred back to the hospital where I had my spinal fusion all those years ago.
It was a long drive from Bristol to London, but I had my partner Jackie with me for moral support. I was nervous about going back to the hospital where so many difficult memories were formed, but at the same time I was looking forward to thanking my surgeon Dr Nordeen for essentially saving my life.
As is often the case when revisiting a place from childhood, the hospital at Stanmore seemed much smaller than I remembered. I was surprised I still knew the way to the X-ray department. Countless walks though those cold corridors with their awkward slanting floors that resembled a poorly drawn Escher painting had been forever etched onto my brain.
It turned out that nothing structurally had changed with my spine, but I was referred to another hospital in London for lung function tests and a sleep study.
During the sleep study, a heated clip was attached to my ear which would keep track of my oxygen and CO2 levels through the night.
The next morning after quite an anxious and interrupted sleep, I met the doctor to discuss my results. He was annoyingly upbeat, but that was no match for my well cultivated pessimistic attitude. He explained to me that I would need to use a non-invasive ventilator every night for the rest of my life, but that the good news was that by doing so, my breathing was unlikely to get any worse and I should be more energetic throughout the day. I would have to go back to the hospital at a later date for a three night stay to get set up with the ventilator.
I was crushed. It was another huge win for anxiety. Something else to add to the long list of things that I had worried about constantly for years that would eventually come true.
A week later I was heading into town to meet a friend for coffee. On my way out of the house I noticed a letter from the hospital, so I picked it up to read on the bus. I assumed it was just some general information about the sleep study so I wasn’t worried. Sitting on the bus, reading the letter my eyes fell upon these words:
Diagnosis: Type 2 Respiratory Failure.
I started having a panic attack. The doctor hadn’t mentioned anything about respiratory failure, he just told me about needing the ventilator at night. I couldn’t breathe. After a few harrowing minutes I was able to calm down as I reassured myself that I wasn’t about to die. I recalled the doctor saying to me that with the ventilator I would be able to lead a normal life. If my life were in fact in any imminent danger, he definitely would have said something!
This diagnosis was very difficult for me to accept. Respiratory failure was something I had been fearful of for many years. I kept telling myself that I couldn’t handle it, that it was too much. Having Jackie by my side was a true godsend.
The three night stay at the hospital was probably the most difficult experience I’ve had to deal with in recent years. I was on a ward with two other people yet I had never felt so alone.
The sleep technician brought in the ventilator and talked me through its operation. Then I had to put on the mask while she adjusted the various pressure settings for inhaling and exhaling. Once I was set up, she left me to try and acclimatise to the sensation of breathing with the mask.
I lay there on my side with my eyes wide open. I felt like I had been transported back to intensive care. There were a number of similarities between this non-invasive ventilator I was now using and the very much invasive ventilator I was on after my spinal surgery.
I remember slowly becoming conscious after my first operation. I could hear my parents faintly in the background and I tried to wave hello. I could barely lift my arm before it was pushed away. It turned out that the nurses were worried I was trying to pull the tube from out of my mouth.
As I became a little more alert, still with eyes shut and very much in a daze, I started to notice a peculiar sensation. I wasn’t entirely sure if I was in control of my breathing or not, so I decided to come up with a little experiment to find out.
It turned out that when I tried to inhale, I would in fact inhale. So nothing strange there. But when I tried to hold my breath, I found that my lungs would inflate anyway. Very odd.
This was bizarre but relatively peaceful, being as I was very much up to my eyeballs in morphine. Peaceful, that was until I tried to cough up some phlegm. But I won’t revisit that here as I already wrote about the “hoovering of the lungs” episode in part 1…
The main difference with the non-invasive ventilator I now use is that thankfully there is nothing shoved down my throat and there is no “lung hoover” in sight! But still, many of the sensations are very reminiscent of the intensive care experience and unfortunately, now I am reminded of that trauma every night when I go to sleep.
So I am writing this a year on from when I was first given the ventilator and although I have made a lot of progress with it, I am still struggling.
For the first couple of months I was mainly battling with the mask, trying to get it to fit on my face properly without squirting a stream of ice cold air into my eye or down my neck.
Once I had the mask fitted right, the next challenge was actually falling asleep. If I were to make a list of favourable conditions required for peaceful sleeping, wearing a load of headgear attached to a hairdryer would not be one of them!
However when I did manage to get to that delicious moment just before sleep, that feeling when you are just drifting off, I would often wake myself up in a panic as I was convinced I wasn’t breathing anymore.
I hadn’t realised that my experiences in intensive care had impacted me so profoundly. Looking back over the years, I can now see many many occasions where I have become hyper aware of my breathing. I guess one good thing that has come out of all this, is that now I am aware of it and I can confront it.
Thankfully the panic episodes have more or less subsided now. There was a slight resurgence with all pandemic stuff going on at the moment, but I am now able to sleep for a few hours each night with the mask.
Currently I am yet to feel the benefit of using the ventilator. For a year now, I’ve not had one single night of uninterrupted sleep and I don’t expect that to change any time soon. But I have got to a stage where I am generally rested enough to function adequately through the day, and for that I am grateful.
Throughout all of this, music has provided me with a lot of comfort and catharsis. Whether playing Chopin on the piano or composing on the Native American flute, I am finding music a wonderful vehicle for channeling and expressing emotion.
My latest single ‘Breathless’ is an attempt to create something beautiful out of what has been a very difficult but transformative year.
Written by Andrew Ford 10/10/2020