“My family have given me this positive ‘let’s get on with it’ attitude”

Charles Michael Duke
By Charles Michael Duke     04/01/2019

2018 was a pretty special year for me. And I’m hoping 2019 will have more good things in store.

Just before Christmas, I appeared on the BBC programme, This Is My Song, where I got to perform on national TV.

This was a dream come true for somebody like me, who has loved music and performing ever since I was a kid. But the fact I was there is thanks to the care I have received at Harefield Hospital.

Three months before the show was filmed, I had undergone a double lung transplant.

I have cystic fibrosis. This is a genetic condition that affects mainly the lungs. Children with CF didn’t use to survive childhood. While there is no cure, however, new treatments – medications and advances in transplants – are offering hope.

A life with CF

My parents knew I had CF from birth. But up until I was about 18, I was managing quite well – enjoying life and pushing ahead with my interest in acting, singing and performing.

They didn’t want me to feel any different.

Throughout my childhood I felt the same as other kids – I think that’s to their credit.

They let me find out about CF when I felt ready to research it and ask questions myself.

Unfortunately, with CF you don’t know what or when or how it’s going to affect you, or when you’re going to decline.

Although I’d been quite healthy as a child, in my late teens it was just one infection after another and my lungs were becoming more and more damaged, so I was finding myself in hospital a lot.

The doctors couldn’t get rid of the infections, so it was a more case of more supressing them rather than being able to clear them fully. 

The transplant question

Things were getting serious. One of the doctors mentioned a lung transplant could be the answer.

I’d always known this was a possibility. But I didn’t think it was something I wanted or needed.

However, the moment I realised I had to take action was when I was performing in a Christmas show in 2014 when I was 18 – I was playing an elf called Sprout – but my lung collapsed while I was on stage.

It sounds dramatic, but I didn’t actually realise what had happened, which sounds weird; when you’re performing there’s a lot of adrenaline pumping.

In the interval I felt a bit woozy, I didn’t feel quite right, but I thought it was my diabetes, so I went and ate some food. Then I realised I felt too ill to go on so the understudy took over, and I went home to rest.

I took myself to Southampton General Hospital the next day to ask for some antibiotics. The doctors told me: ‘Your lung has collapsed’.

The next thing I was on morphine and my chest was being drained.

That was a turning point for me.

One of the medics said something to me that really struck a chord: they said, “You deteriorate and it becomes the new normal.”

It takes a fresh pair of eyes to tell you, “Yes, you really are ill”. I wanted a transplant.

I was listed for lung transplant in April 2015.

The call comes

Over the last few years, I had calls for transplant a couple of times, but the process isn’t that simple. Two potential sets of lungs were found not to be suitable.

However, in May 2018, I received another call. 

I was in Southampton General at the time because I was on a strict hospital regime to help maintain my health for transplant, as like many people with CF, I will need antibiotics to protect my lungs.  I hadn’t had a chance to tell Harefield where I was. I got a phone call from the transplant team. 

There were some organs available.

The question was, would the doctors at in Southampton General believe I was fit enough for the operation.

Thankfully, the answer was yes.

It was actually quite nice I was with the staff at Southampton General when I received the call – I had spent a lot of my life at the hospital. For the previous three years I’d been spending two weeks of every month there, a pretty big chunk of my life.

The transplant would mean my main hospital would now be Harefield, with only occasional visits to Southampton General.

So, I said my goodbyes and travelled to Harefield, ready to go in for my transplant. It was quite a weird experience. I kept reminding myself it might not go ahead because it can be called off at any point, and I don't think it was until I woke up that really believed it was going to happen.

And even then, I found myself thinking, “Did it really happen?”.

My big moment

I was in intensive care for less than 24 hours. The nurses joke that I’m a star patient! My family have given me this positive ‘let’s get on with it’ attitude. It was hard, but from day one I was up and walking.

It was my birthday when I was in recovery and my doctor, Dr Carby, really wanted me to eat some cake – and although my throat was still quite sore from being intubated, I managed!

Apparently, the average recovery time – that’s when you get to leave the hospital –  is three weeks. So, I said, I’ll do it in two. In fact, I did in two weeks, two days. Of course, everyone is different. Another guy I was in with, was out in a month. Then I met someone else at transplant clinic who did it in 11 days!

When you realise people were in hospital for six months when transplants were first done, these times are phenomenal.

Recovery and my future

My voice was husky for a long time, but I managed to sing on This Is My Song. It was still recovering at the time of recording the song, but considering it was only 12 weeks post-transplant I’m really happy with how it came out. And it was more about marking the end of this journey for me than sounding like Beyoncé! Singing with my new lungs was amazing, I could reach the end of sentences, hit notes I couldn’t before, and my voice sounded so different as I didn’t have mucus on my vocal chords.

Of course, even after a transplant you need to be careful of your health. There’s always the chance of rejection, or things not going according to plan.

But I’ve met people who’ve had heart transplants for over for 30 years, and they are still going. There is an Irish lady, Vera Dwyer, who has celebrated her 30th anniversary after receiving a lung transplant.

It makes me think if these people have done 31 years and how far science has come – I do feel optimistic for 2019 and beyond!

This is My Song is available on the BBC iPlayer until 20 January 2019