4 July 2018
I’ve been coming to Royal Brompton since I was 16, when I left the care of Great Ormond Street Hospital.
I have cystic fibrosis (CF), as did my younger brother Nic. Initially, I was under the care of Professor Margaret Hodson, before her retirement.
When I was diagnosed with cystic fibrosis at birth, it came as a real shock to my parents as very little was known about the condition in those days.
They learned quickly and were very caring and attentive, following all the guidance from the CF team which, amongst other things, involved twice daily physiotherapy and a mountain of drugs.
As boys, Nic and I were very lucky in terms of our health and in truth, we didn’t let it affect our lives too much. We were both very sporty, playing rugby, football, cricket and tennis and living life to the full, albeit coughing a little more than all of our friends.
After school and university, I moved to London in my early 20s and I was carving out my career in property and enjoying a good social life, whilst still playing sport on a regular basis. I was still very well and was keen not to let CF affect my life.
My big goal was always to stay out of hospital. I really didn’t want to be admitted for two-week courses of intravenous antibiotics as I was too busy working and enjoying myself doing more exciting things.
A turning point
However, when I was 33, Nic died of complications from CF. He was only 29.
It was obviously devastating because he was more than just a brother, but a best friend. He had suffered more than me throughout our lives yet even so, it was a massive shock that he lost his life at such a young age.
It made me realise how fragile life can be and that going forward I must pay even closer attention to my own condition. I needed to take my own wellbeing, and CF, even more seriously to ensure that I gave myself the best possible chance.
From that moment onwards, I knew that at some stage in my life I must get on the transplant list – before it was too late to help me.
As time went on and I became older my lung function began to deteriorate, as the doctors had predicted and expected. I had to stop playing cricket and eventually golf too. I could no longer make it round a golf course, even with a buggy.
I found myself spending more time in Royal Brompton for intensive therapy, which included physio and intravenous drugs.
By the time I was in my mid-forties, I was becoming far more reliant upon oxygen, both for sleeping and for daily activities, although I tried not to let it affect me too much.
I continued to do as much as I possibly could. I was determined to keep active and keep fighting. I was still working full time, but life was becoming increasingly difficult.
In March 2017, after a few hospital admissions, I took a huge turn for the worse. I was admitted to the Royal Brompton.
At that point, even having a shower would leave me completely exhausted.
Even with all the best efforts of the medical staff at Royal Brompton and my own oxygen-assisted exercise, my lung function readings were 17 per cent and 35 per cent of the predicted readings of a ‘normal’ person of my age, weight, height, size.
The hope of a lung transplant
I couldn’t function without being hooked up to oxygen. I ended up staying at Royal Brompton for ten weeks as I awaited my only hope – a lung transplant at Harefield.
I wasn’t scared. It was very comforting to know that I was in the specialist CF ward at the Royal Brompton, being well looked after and, all being well, would be going to one of the best possible places for a transplant. These people who were the experts. This is was what I focused on.
When eventually the call came early one morning to advise that a pair of donor lungs had become available, I was rushed to Harefield. I was well looked after and made to feel very welcome.
The staff were calm, friendly and had a quiet confidence, which was very reassuring. I felt as relaxed as I possibly could have done in the circumstances.
The whole process at Harefield is extremely professional and very well thought out to make it as stress free as possible for the patient. Even the ‘holding area’ outside the operating theatres has birdsong playing to a backdrop of floral designs and soothing colours.
Thirty-two hours after going into theatre I woke and my new life began with my new lungs. The road to recovery has not always been straightforward. There was pain initially but it was a small price to pay.
Thanks to the staff at both Royal Brompton and Harefield hospitals, plus all the exercise that I was encouraged to do, plus the myriad of new brightly coloured pills to pop, a year on and I feel transformed. It really is something of a miracle.
I have gone from being completely oxygen dependent to, at the latest count, having lung function readings of 125 per cent and 111 per cent of the predicted readings of a ‘normal’ person, which is so much better than the average. It is quite incredible and beyond my wildest dreams. I have been very lucky in so many ways.
My transplant has allowed me to quite literally have a new life and it is simply amazing with my new lungs. I can now walk for miles, I can run again and I feel like a youngster.
There is, of course, always the possibility of organ rejection, for who knows what might happen in the future yet I am determined to give my new lungs the best possible chance.
I can only thank my donor, who I later found out was a woman much younger than me, for deciding to become an organ donor, and the family members who agreed with that decision. I am eternally grateful and they are forever in my thoughts.
The brilliance and care of the medical staff
This has only been possible because of the brilliance and care of all the medical staff at both the Royal Brompton and Harefield hospitals.
At Royal Brompton, the CF specialist team comprising Dr Khin Gyi, Dr Nicholas Simmonds and Dr Andy Jones; dietitian Sarah Collins; physiotherapists Helen Parrott, Zelda Beverley and Charlotte Gray in more recent times, have all been fantastic,
In addition to being thoroughly professional and dedicated in their roles, they have become more like friends. I guess I have been going there long enough so I have got to know them all quite well over the years.
The nurses cannot go without mention. They were always willing to help, highly professional and worked such long shifts too. They are like the glue who stick everything together.
At Harefield Hospital the levels of care, knowledge and professionalism are exceptional and I cannot thank the team enough.
I have had dealings with many of them both pre and post-transplant, from the unbelievably talented surgeons who perform such life-changing operations to the respiratory consultants Dr Martin Carby and Dr Anna Reed, and the transplant, respiratory medicine and nursing teams.
It is a very special place. It was where my life was changed.
A more detailed account of Andrew’s experience is available on his website.
Join the organ donor register