“My biggest fear in life was tearing my ACL which sounds silly as someone with CF, but I don’t know who I am without my exercise” – Drew’s story

Growing up with CF

I have a sister who is two years older than me. When she was two years old, she was really sick and the doctors didn’t know what was wrong. She had a sweat test which revealed that she had cystic fibrosis, and they tested me as well. I was then diagnosed with CF when I was one. 

Everyone with CF is different, has different symptoms, and handles stuff differently. Mine has been really difficult to manage. I was a regular with the CF team, having to go in for IVs every three months for two weeks. I think, when I was younger, my parents found it hard because CF wasn’t well known, but doing activity was heavily encouraged. 

How did you get into playing football?

I started playing football when I turned four, and have been playing ever since. I won’t lie, my health struggles have made it difficult to keep at it. When I was six, I was having IVs all the time, often growing aspergillus, and would have to stay in hospital for weeks. Kaftrio has made my CF a lot easier to manage, and my football has been more consistent. 

When I was 13, I went to England camps and was in academies, and I never dreamed I’d reach that level. I was working really hard fitness-wise to keep up with everyone else, and was doing extra training. 

It’s not easy being someone with CF who loves playing football. When I was younger, I needed to have a port put in, and I didn’t want it on my chest because it would stop me playing football. Instead, they put it in my arm. Four months later, someone kicked a ball at my arm and I got a clot in my main artery. It was a week before Christmas, and I didn’t get discharged until Christmas Eve. I had to be put on heparin and couldn’t play football. I lost confidence from that. 

If you’re at an academy and you have no confidence, it’s game over. I got dropped and then two months later was diagnosed with diabetes. I decided that football couldn’t be my life goal anymore, but I could still play grassroots and enjoy it. 

Tell us about your recent health challenges, and your injury

This summer just gone, I’d been really working on my strength and fitness to play contact football again. In August, I was just about to go on holiday when I got my first experience of tonsillitis, and it was awful. I went to the doctors and they gave me antibiotics but it just got worse. I went to A&E with a high temperature and a full body rash and they said they would do an X-ray to check to see if I had glandular fever. I was so weak, I nearly collapsed so they had to do the X-ray while I was on a bed. The doctor said: I’ve got good news, it’s not glandular fever, but the bad news is that it is pneumonia.

I was terrified. I thought everything I’d worked for fitness-wise would evaporate. I transferred over to where my CF team was, as they knew more about me and my health. I was in hospital for four days. Up until that point I’d done at least 10,000 steps every single day for three years. I lost my streak after pneumonia. 

After oral antibiotics, I could still go on holiday but I had a bad reaction and my hands were raw with skin shedding. I was glad I could still go, but I couldn’t enjoy going in the pool and was still anxious about getting back to football.

Back from holiday, I wanted to get back on track with my football and exercise, and since then I’ve had tonsilitis eight times so I’m waiting for a tonsillectomy. My fitness did bounce back, but my chest felt tighter and it was different. 

I was just getting my confidence back when I got on the wrong side of a tackle in October. I felt the pop and I was screaming on the floor. I did go to the doctors but they can’t do anything. I got told it was probably a dislocated kneecap, and I felt better as the recovery time would have had me back playing by January. They did an MRI just to make sure. Two days later I got a call to while in a university lecture to say that they had my results but I would have to wait for a call from the doctor to explain. 

I was so, so, anxious and knew I couldn’t wait. I know you shouldn’t do it, but I went on the NHS App to find out the results myself and just started bawling my eyes out. My biggest fear in life was tearing my ACL which sounds silly as someone with CF, but I don’t know who I am without my exercise. A snapped ACL and lateral meniscus! I couldn’t believe it was happening after everything I’d been through. I’ve had a few friends tear their ACLs and they’ve had to wait for a year to get surgery through the NHS. I can’t wait a year without doing any exercise with the vulnerability of my cystic fibrosis and diabetes. 

Tell us more about your fundraiser

Having CF and diabetes means that doing no exercise is just not possible. Exercise is so important in keeping my lung function stable as well as my blood sugar levels, not to mention how much it helps me mentally.  I need the surgery done as soon as possible. 

My first consultation was £200 alone, and I’ve now been told that the surgery will cost me £10,000. I’m a university student and I can’t afford that. I've also not been able to work due to the recovery period of the injury. But I can’t afford to not do any exercise either. 

I was really stressing about it. I don’t normally talk about my cystic fibrosis as I don’t want to be treated any differently – I like my football to speak for me. It was embarrassing, but I knew I was going to have to ask for help. I nearly took the fundraiser down straight away, but I kept it up because someone I went to school with who I haven’t spoken to for years was the first person to donate. It made me so emotional. She saw what I went through at school, and I couldn’t believe she wanted to help me after all this time.

Without being able to get out and play football, I don’t know who I am. I don’t know what I’m doing. I wake up in the morning and want to go for a run, but I am struggling to even walk. I don’t know what to do. I speak to a therapist every two weeks through my CF team, but with the year I’ve just had, it feels like I have a lot to go through every time. The recovery for the surgery is 9-12 months so if I didn’t go private, it would be no sport for two years which my brain and body just couldn’t even comprehend. CF has held me back so much in life and now I am 22, I really just want to start living instead of surviving. 

Why is raising awareness just as important to you?

When you have CF, there is a lot of medication and physio involved. This can be so long and tedious, and football helps me to clear my lungs but also has a lot of mental health benefits as well. It means everything to me.

When I was younger, football was the way I socialised because I was normally too unwell to go to parties. And once you say ‘no’ to one party because you’re poorly, people don’t ask again.

Now, people I don’t even know have donated and shared my fundraiser. When I was younger, I went to Jill Scott camps. She started talking to my mum at these camps and took an interest in me, and we’ve been connected on social media since then. When I shared the fundraiser on social media and she shared it too, I was blown away. I’d never have asked, but having that support from her and the Northern Echo has meant so much, and it’s showing what a huge impact an ACL injury can have for a young athlete and someone with CF. I would like this fundraiser to not only help me but also raise awareness for the struggles that those with CF have to go through.  

If you’d like to fundraise for Cystic Fibrosis Trust, join our new virtual challenge and walk 11,000 steps a day in February. Find out more and claim your free t-shirt here.