7 September 2018
I grew up in São Tomé, Africa. My mum used to worry about me all the time. I was always getting coughs with a lot of mucus that I’d have to spit out. I think the hope was I’d grow out of it. Nobody said anything about a serious illness.
In 2003, I moved to Portugal to study tourism, but unfortunately, in 2005, I got very sick with a chest infection. It got so bad I was taken to hospital and given Intravenous antibiotics. The doctors diagnosed me with cystic bronchiectasis – the symptoms are similar to cystic fibrosis. Lung infections cause damage to the bronchi and they become too wide, making the lungs build up mucus and infection.
In a way, it was a relief to find out what it was. But I also discovered there was no cure for bronchiectasis. I have the most severe form – which is progressive and can be fatal.
This was tough. But I felt OK; I was calm. The best way of treating any condition or disease is your own attitude. It’s vital you don’t get too low about it. I made the decision to remain positive. You have to live your normal life.
However, I made the decision not tell my mother about it. She was in São Tomé in Africa so I kept everything very vague when I spoke to her. She worried about every headache! It was easier this way. After all, she could do nothing. And I knew if she worried, I’d worry.
My wife Iglesia, who I met at university, supported me a lot. And my brother in law Teodoro was great too.
In 2006, I was in intensive care for seven days intubated and my brother was with me – he managed to make excuses about why I couldn’t speak on the phone!
At one point, doctors in Portugal mentioned a transplant. But it seemed too much. After all, I felt like I was getting better. In 2009, my wife had given birth to a little girl, Tatiana, who is now nine. I felt so well, my wife and I made the decision to move to the UK in 2011 – I am aiming to have a career in tourism, so this was a perfect way to improve my English.
I started working in Nando’s. It can be a busy and demanding job, but I managed. I worked for two years and I wasn’t sick. I thought, ‘Maybe my positivity is paying off’.
Unfortunately, in the winter of 2013 I started to get sick again. I was admitted to hospital three times with chest infections. I felt my lungs were weakening.
I was referred to Dr Carby at Harefield Hospital. He floated the idea of a transplant, just like the doctors in Portugal had. It was a scary thought, but at this point I could see my health was deteriorating.
I was using oxygen at night to help me function. In 2015 I was told I should be on oxygen around the clock. But I had to work to support the family. In the end, I increased the time I was on oxygen, I’d start at 8pm and stop at 8am. I still worked, but on a part-time basis.
The truth was, I was really struggling. Dr Carby told me my condition was getting too dangerous. In July 2016, the doctor told me I needed to be hooked up to the oxygen all the time. I also had some news for him. My wife was two months pregnant … Given the fact I was so poorly, he was very taken aback! But we were thrilled. We were looking ahead, being positive.
Early in 2017, I was listed for transplant. My wife was heavily pregnant at this point, and I could hardly breathe. The only chance I had now was a transplant. My little boy Thomas was born on 13th June 2017. Ten days later, Dr Carby told me my situation was becoming critical. He wanted me in hospital all the time, until a pair of lungs became available.
A few weeks after I was admitted, a pair of lungs did become available – but unfortunately, they weren’t suitable. So, I was left waiting again.
Over the years, I had been in hospital a lot, both here and in Portugal. But I’d been in for a few weeks – and then I’d come out. I always knew I’d get out again.
Spending time waiting for these lungs made me feel very low. There were a lot of questions in my head. Would the lungs ever come?
Would I survive the operation? My wife had just had a baby … would I ever get to be a dad to him? I’d always been so positive, but this time I was in tears.
There were a lot of tears from my wife too. She was there with our daughter and this tiny baby of a few weeks –thinking she was going to lose me. I missed my family so much.
The staff were worried about me as I was so flat emotionally, they decided to let me back home, on the understanding I had to be able to come in at very short notice if a pair of lungs became available.
So, I was out for a few weeks. But I started to get very ill again and couldn’t breathe and I was rushed back to Harefield.
They thought I wasn’t going to make it. I was placed on an ECMO machine which pumps and oxygenates a patient's blood outside the body, allowing the heart and lungs to rest. The doctors put me in an induced coma, but in August I was woken up: another pair of lungs had become available. Did I want them?
”Yes,” was my response. “I’m ready for a transplant.” The operation was scheduled for the evening. My wife was with me, with my baby boy outside with my mother in law. As I was prepared for the operation, the staff asked me if I wanted to see my baby boy.
Shaking my head, I said, “No, I’ll see him afterwards.”
I caught the team exchanging glances – as if to say, ‘He seems confident’. And I was. I just knew. I knew I would come out again and see him.
The operation started at 9pm and went through until 9am.
Apparently, it was a little more complex than the textbook operation. They thought they had lost me. But thankfully, I started breathing again.
When I woke up a few days later, every single one of the nurses who had been involved in my care came in my room to see I me waking. I felt like a celebrity.
The recovery wasn’t that easy initially. I had to be taken back into theatre for a small repair. I stayed in intensive care for week and a half, I’d been in bed a long time I needed a lot of physio, as I had been lying down for so long.
But I was determined. Incredibly, after that huge operation, I was out of hospital in two weeks. When the staff saw me walking about, they didn’t believe it was me. One person joked, “Are you Wilson’s twin brother?” I looked so well after having been so close to death.
It’s been about a year since the transplant. Now I can run and play with my daughter. I couldn’t even exist without oxygen before. It was terrible.
One day I was late for the bus – the bus was coming and I suddenly realised I could run –I did and I was fine. It felt amazing. There have been a few blips in my health, where I was taken into hospital – I had shingles and then pneumonia – but I recovered. Soon, I hopefully will be able to go back to work.
Every day I am mindful that although I am living, somebody else died. I think of the people who lost a loved one and who were generous enough in their grief to think about someone in desperate need, like me.
I want to say thank you. I’d love to speak the person’s relatives. I’d love to tell them how much the donation has meant to me, to be with my family and my wife, to appreciate life. I am waiting for the right moment to see if this is possible. I don’t want to intrude on their grief.
Hopefully, the fact I am living gives meaning to someone’s death; a new life.
I like to think of my donor in heaven, looking down and seeing me playing with my kids, feeling happy that his lungs are helping me be a father to my children.
That is how I imagine my donor.
Find out more about Organ Donation Week 2018 - Monday 3rd to Sunday 9th September https://www.organdonation.nhs.uk/