CF | Charlotte's Story

Hi! So it may not be CF Awareness Month any more but Cystic Fibrosis affects people all day, every day so I'm carrying on with raising awareness! This week's post comes courtesy of Charlotte (@queenie321) who actually received a double lung transplant back in 2011. If this doesn't make you want to sign up to the organ donor register I don't know what will! Read on to discover her moving story, I think we'll all agree she's a massive inspiration!

My name's Charlotte, I'm 20 years old and a complete stranger saved my life so I don't have the lungs I was born with. 

Go back twenty years when I was diagnosed with Cystic Fibrosis at three weeks old. CF is a genetic condition inherited by your parents, if they are both a carrier of the faulty gene that causes CF then there is a 1 in 4 chance of them having a child born with the condition. I was one of them. CF primarily affects the lungs and bowels but many other issues are associated with CF - these include sinus problems, malnutrition, diabetes, liver problems, low bone density and so on (you get the jist!)

Now a bit about me; CF has always played a massive part of my life as I started having three monthly Intravenous Antibiotics (IVs) when I was just 3. This was because I had picked up the bug Pseudomonas. All through my childhood my lung function never went over 50% and my weight was extremely low. I had overnight feeding from the age of 2 through a tube in my nose and when I was 5 I had a gastostromy peg fitted. Being so young and having to deal with not being a 'well' child was hard. I missed plenty of school and time with family and friends. 

When I reached my teens my health deteriorated even more. The chest infections were getting worse and more frequent and more and longer hospital stays were becoming vital in keeping me as well as possible for at least a month. At this point my lung function was at 30%. My left lung collapsed a month before I was to finish school. This resulted in 5 weeks in hospital, my lung collapsing again, surgery and missing my final days at school and my prom. That was the hardest thing for me. I could deal with missing out on things over the years but this was the point I felt 'Why me?' My CF team just a few months earlier mentioned that the way my health was going I should talk about the possibility of needing a double lung transplant. For me this was the hardest thing anyone had ever said to me. I shut down. Refused to talk about it and pretended it wasn't an issue. I was still doing 'normal' things in my mind like doing dance at school. It wasn't until my lung collapse that I realised the state my lungs and general health were in. After being discharged the smallest things in my life became one of the hardest I had physically done. Like drying my hair, my three year old sister had to help.

Not long after being home I gave the nod to be referred to Harefield hospital to find out more information about having a transplant. Within a few months I had another infection that gave me another setback. I needed to use oxygen overnight. This was at the same time a very close friend of mine who also had CF and was only 12 passed away. This hit me extremely hard. I was heading the same way Maisie was. She had been assessed for transplant also but then was too ill to stay on the list (to be eligible for transplant you have to be ill enough to require one but also strong enough to be able to go through such major surgery.) At this point I was using a wheelchair out of the house and was becoming more dependent on oxygen throughout the day. At the appointment you have various tests including blood, x-ray, exercise test, ECG, ECHO and then a talk with the consultant. This is all to see whether you are a suitable candidate. I was told I could but needed to go back for a three day assessment. This would be more of the same test as well as talk to nurses and find out the ins and outs of transplant. After the assessment I received a call a few days later to say that they were waiting on my sputum result and if that was okay I would go on the list. The transplant co-ordinator rang the day before Christmas Eve to say I was on the transplant list. At 17 years and 6 weeks old I was on the transplant list awaiting a life saving call. Only a year earlier I was at school preparing for the future and at this point in my life I didn't have one. My health stabled out for a while as I went from being on the paediatrics to the adults. I also passed my driving test which I'm extremely proud of.

I then at 1:15am on the 17th October 2011 received that call I had been waiting for. I had waited 10 months without a false call. We went straight to the hospital where the time we waited is just a blur. I told myself that it wouldn't go ahead as it was my first call. I had tons of blood taken as well as the usual tests. At 1:30pm we were told it was going ahead. I needed to get a shower and be in theatre within the hour. As I went into surgery and said goodbye to my mum, stepdad and dad I was wheeled into surgery holding Ted's hand to be put to sleep. This is the scariest thing I have ever done. Nothing will ever come close to that feeling of being put to sleep in the knowledge you may never wake up again. 

The next thing I remember is getting frustrated. I was drugged up, in ITU, on a ventilator. My shoulder hurt and I was trying to communicate. The next thing I remember is looking at my lungs on a screen. They were doing a bronchcoscapy to check my lungs. From looking at that they took the ventilator out, sat me up and I was on a small amount of oxygen. This was less than 24 hours after surgery. My mum walked in, in shock. She wasn't aware of what they were doing and that I'd be awake. The first thing I said was 'I've seen my new lungs and they were pink.' Most people say that they can't tell the difference straight after surgery that they've got new lungs. Not me. I felt a massive improvement in that first breath. Less than 48 hours after surgery I was moved out of ITU, one of the quickest. It was a hard journey. Painful, uncomfortable but there was a light at the end of the tunnel for the first time in a long time. I could finally start to think of a small future. I was discharged after three weeks of being in. The first three months weren't easy, I was in and out of Harefield for various reasons. After my final discharge at the end of January things settled. Appointments started to get longer apart and I started the process of applying to college. Since then I have nearly finished college, been abroad a few times and enjoyed every moment of my life.

Transplant isn't a cure but it's the closest I will ever get, I'm finally living a 'normal' life in some aspects and am looking forward to starting university in September. CF has made me who I am. Would I change it? Maybe. But I wouldn't change the determination I have for life. If you'd like more information on Cystic Fibrosis please check out the Trust's website http://www.cysticfibrosis.org.uk/ also please don't forget to sign the Organ Donor Register. Live life then give life! :) http://www.lltgl.org.uk/

Thank you so much for that Charlotte! As she said, transplant is by no means a cure but the difference organ donation can make by prolonging and improving people's lives is truly amazing. If you'd like to check out more stories here's Lily's and Andy's. Or if you'd like to share your experience of living with CF, whether it's you or a loved one who has it, please feel free to send me an email at josiesjournal@live.co.uk. 

Josie x