“My children are going to see their mummy graduate in October and for me it’s everything” – Ana’s story
I have two fairly rare cystic fibrosis genes, so my symptoms weren’t quite the same as others with CF. My lungs were my main problem. In my early years, my treatment was very trial and error because they couldn’t understand what was going on with my lungs. The hospital found it tricky in deciding what would work best. I wasn’t officially diagnosed with cystic fibrosis on paper until I was 39, as my genes weren’t recognised, although I was treated for many years by the CF team. Symptomatically I was a CF patient but genetically it didn’t appear that way, until technology advanced over the years and they found my genetic make-up.
My lung function deteriorated over the years, though it was very gradual, so my body adapted fairly well and I learnt to go with the flow. Despite that, I was physically fit. I loved swimming and it kept my lung function as strong as it could be.
Over the years I became intolerant to lots of different antibiotics. On my red hospital wristband, I had about 12 different allergies and reactions listed. Eventually my antibiotics stopped working; my medications were making me ill because my body was rejecting them. I then developed a large haemoptysis – a lung bleed - and I had to have an embolisation which knocked my lung function down. I then had a second lung bleed and I was put onto the urgent transplant list.
Being ready for transplant
My main reasons for transplant were my lung bleeds, having to have IVs for up to six weeks a time, and my intolerance to medication. I couldn’t maintain a good quality of life. I was assessed two years prior to transplant but I wasn’t mentally ready to have such a big surgery. I needed to feel 100% sure with that kind of decision. You have to be very mentally strong to have a transplant and get through the recovery. The team wanted to put me on the active list but in my mind that was only a back-up plan and it surprised me. Even though I was aware there was a small window of opportunity, I just wasn’t ready.
I ended up having a second lung bleed and it gave me the push I needed. I would have had to have been on 24-hour oxygen. After that, I was assessed straight away and I was put on the urgent transplant list. I only waited for three weeks until I got my call, so not very long. It was during the COVID-19 pandemic and the hardest thing for me was not having family, children, or friends around as no visitors were allowed into the hospital. I felt very alone and scared; I could have really done with the support of family and friends during that time.
It was as if, until I was on the transplant list, I didn’t realise how ill I actually was. I just knew I needed to keep going, even when I was really ill; that’s just how I am, plus I had no other choice. I used to have to sit on the floor to load the washing machine. My husband had to dress me. I couldn’t wash my hair. I suddenly realised… I’m really ill. The transplant was a second chance at life. I thought, let’s just do this and see what happens.
Life post-transplant
Within a few days, I was on my feet, moving. My surgery was pretty straightforward; it was the aftereffects that had the biggest impact on me. I was left with nerve damage on the right side as they had difficulty removing my right lung. The surgery was nine hours and four of those were spent trying to get the right lung out. Chronic pain is an ongoing issue I struggle with. I also can’t retain information massively as I’m on a cocktail of medication which impacts this. It’s not an easy ride – I’ve had the transplant but I still have CF.
This is all new for me – living with chronic pain and with new symptoms. I’m learning everything and my body again. It’s hard work, but I’m grateful to be here today.
I just completed a postgraduate course at Sheffield Hallam University. It took me 18 months rather than a year, but I did it. My children are going to see their mummy graduate in October and for me, it’s everything. The activities I can do with my kids are amazing; simple things, like walking in the park with them, I couldn’t do before, but I can now. A really important thing for me was being able to take them to school. Even when I was poorly my husband would take me so I could watch them go in. These are the little things most people might take for granted, but I can now walk them in myself. I feel grateful every day to be alive.
The British Transplant Games
I took up golf last year in April. I had been looking for an outdoor sport, where I could do plenty of walking and enjoy the beautiful scenery. I would never have considered golf before though because I thought it was an old man sport! My mum is also new to golf and she said she thought I would like it. She gifted me a Gateway to Golf membership, and I found the whole experience gave me confidence and self-esteem.
With this I competed in the British Transplant Games in July this year as part of the team from Harefield Hospital and raised over £4,000 for the Harefield Transplant Club. I’m the only golfer in our team, plus I’m female too, so I’m representing the ladies in a male-dominated sport. The whole thing was an incredible experience. The mental health side of golf is amazing and is really helping me – it’s an escape outside, walking, breathing, and feeling the fresh air. I can do that whenever I want; I’m not stuck inside in hospital anymore.
I’m determined – as a lot of people with CF are
My golf coach is fantastic and worked with me at my pace as I have weaknesses from the transplant. I struggle with numbness and pain in my chest area and with my grip and overall strength. But I am determined, as people with CF often are. We know ourselves and know what we’re capable of. We are stronger than a lot of people realise.
Next year I have decided I’m going to compete in swimming too. I swam so much when I was younger, I was a swimming coach, and I swam competitively. My team need another swimmer but I haven’t swum for so many years. It’s so exciting. I’m always up for a new challenge.
