These past few weeks have been, for both me and my wife, as for so many people, a time of great fear and anxiety. And this situation has began to unravel only weeks after we were given the incredible news that a new Triple Therapy treatment, which has recently become available for many patients with cystic fibrosis, will be suitable for me. Whilst not being a complete cure, the hope is that this drug slows the progression of CF, and whilst it cannot undo any damage to the lungs and other organs affected by CF, it is an enormous step in its treatment, and after I'd finished shedding tears of joy and relief in the clinic after the specialist had told us the great news, I felt for the first time what it may be like to imagine a future where the life-threatening part of CF was pushed back further and further. Even if it means I will still have to do all my nebuliser and physiotherapy treatments, which take hours to do each and every day, it would still give me more of that most precious commodity: time. I went to sleep that night with a belief that Lydia and me could perhaps actually grow old together, a thought I'd previously not really been able to entertain, as when I was diagnosed the life expectancy for someone with CF was late teens (a baby born with CF now has a life expectancy of late-forties/early fifties.) I hope to turn 49 later this year, so you can probably imagine the immense relief this wonderful news brought for my wife and myself. And then, just a few weeks later, it became clearer that Covid-19 was enveloping the world, spreading ever faster and causing things that were almost unthinkable a few months earlier to actually happen: entire countries in lock-down, sporting events and tournaments cancelled, and, in general, a very different looking world indeed. Because of my CF, I am in the Clinically Extremely Vulnerable group, and this whole outbreak is terrifying, not only because of the fear of catching the illness itself, but because of the knock on effect it is having on our wonderful health service, which is being stretched beyond belief. This aspect is probably, at the moment, the most worrying for us, because as Lydia and me began to self isolate about six weeks ago, we are hoping very much that all the precautions we have put in place will minimise the chance of us getting the virus at this time. But what is terrifying is what happens next with my CF. I need intravenous antibiotics, on average, about every ten weeks to three months to keep the infections at bay in my chest. I have a port-a-cath that needs to be flushed every six-eight weeks and, usually, this would always be done in hospital. Fortunately, Lydia has been trained to do this so we can do it at home but it is very stressful as things can sometimes go wrong, and the last thing we want to happen currently is that I have to go to hospital. There are also any emergencies that might transpire. I sometimes have issues with coughing up blood and this can be very frightening at the best of times, so now, with the health services so stretched and with us having been advised to not leave our home for at least twelve weeks, the thought that I might need hospital treatment is very scary indeed, and there are other things that can happen, too, which require hospital treatment: DIOS (bowel blockage) for example. And then there are the routine tests which are required, particularly blood tests which are required before, during and after IV treatments. We don't know as yet what will happen in this case. My next clinic appointment has been changed to a virtual appointment and I guess we'll find out more then, but it is a very worrying, anxiety-provoking time.
We have managed to get some deliveries (thanks to a few friends we know) and I have now been added to the government's list of vulnerable people which means we can get groceries, essential household goods, etc, delivered and which has been a huge relief. But the delivery slots are still few and far-between, even though I'm registered on the government's extremely vulnerable list, and as neither of us can leave the house, managing to secure delivery slots is a constant concern. Our beautiful best friend picked up my last repeat prescription from the chemist (it took him two trips as I have so much stuff!) and although we have had no issues so far, this is something else which is a cause of great concern. There is also my nebuliser machine, the discs it needs and the sterilising of the mouthpieces. If any of these fail on me, I have no idea if or when replacements would be able to be made available, and as these treatments are vital for my health, it brings yet another added layer of worry that never goes away.
And from a less personal point of view, there are the heart-breaking stories from both the UK and abroad. I recall seeing quite a lot of posts from people on Facebook a few weeks ago saying that Covid-19 was "just flu," and how they were going to carry on as normal as it didn't effect them. When the number of people who had lost their lives in Italy reached one hundred, I remember thinking that that was more people than died at the Hillsborough Tragedy in 1988, and wondered when people would start to take it seriously. Now the severity of what's happening is all too clear for everyone to see and my heart goes out to people who have lost loved ones all over the world.
And my heart also goes out to the NHS professionals who are right at the heart of this terrible crisis. I have got to know many of the fantastic CF team at Southampton hospital, and the two of us here think about them daily. They are incredible people who have seen us through some very tough times and I think they, and all the health workers and carers, are absolute heroes.
And in among the conspiracy theories, and hopes that things can go back to normal, whatever that is, as soon as possible, my hopes and future now depends on science and physicians once again, for as well as my CF, I now need to hope that they will be able to create an effective vaccine in as quick a time as possible. In the meantime I have to batten down the hatches, try and do everything to remain as physically and emotionally well as possible, and prepare for what might well be twelve-eighteen months of isolation from the outside world. And yet, I feel fortunate and am enormously grateful to the people who are out there, putting themselves at risk, so people like me are able to stay at home: the delivery drivers, the utility people, even those making sure we have internet and phone connections so we are at least able to stay virtually connected. I sincerely thank you all, and if anything comes from this terrible situation and the heartbreak it is wreaking on so many lives, I hope these courageous, previously derided "unskilled labourers", are held in the far higher esteem than they were before this calamity struck humankind. Please, if you can, stay at home, and remember to be kind, for we are all deeply scared, immensely worried and more than just a little broken.
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