“I’ve tried my whole life to not let CF define me, and then COVID-19 came along and it felt like it was doing exactly that”: Vicky's story

My donor enabled me to achieve the unachievable

I was diagnosed with cystic fibrosis (CF) at three years old. I failed to thrive as a young child but became much stronger by the time I was 11. I started jogging and was a good cross-country runner. If I didn't run outside, I would run up and down the stairs 60 times for physio to make sure I cleared my lungs. But by the time I was 18, my health had started deteriorating and at 21, I was put on the transplant list. 

Soon after that, I transferred to Leeds Regional CF unit and my health actually started to improve; in fact I was taken off the transplant list. I met my amazing husband of 32 years, Erik, on Christmas Eve 1987 and we were delighted to welcome our son Antony seven years later. Unfortunately, I developed CF arthritis after the pregnancy and went back onto the list for a double lung transplant aged 28. This was in October 1998 and after one false start, we got the call we had been waiting for in April the following year. Our son Antony was five years old when I received my double lung transplant at Freeman Hospital in Newcastle.

Fast forward 22 years and I recently celebrated my 50^th birthday, which was amazing and a milestone I was very thankful to make. My donor and donor family enabled me to achieve the unachievable and I feel truly blessed to have survived to see Antony become an adult and, two weeks ago, a father! I cried when I first saw my grandson with complete love and joy. I never in my wildest dreams imagined it would be possible for me to survive this long post-transplant and I never imagined I would be a grandma! Every extra year we get together as a family is a dream for us.

My own family were seen as a threat to my survival

I try to cherish every day, and that’s why the COVID-19 pandemic and shielding has been so hard. It’s had a huge impact on myself and Erik. I’ve tried my whole life to not let cystic fibrosis define me, and then COVID-19 came along and it felt like it was doing exactly that.

I felt completely vulnerable, and for the first time ever I could not see my family. They had, in fact, become a threat to my survival. My mental health really suffered with the isolation and every news story was telling me I was going to die from this virus, and if I did contract it, it felt like I would not qualify for treatment. It felt like I basically wasn't worth the treatment or the bed that 'normal ' people would be offered.

Thankfully, Erik was on furlough for the first six months of the pandemic, so we were able to spend quality time together. We had early morning walks on the beach. I taught myself quilling (creating decorative designs from strips of paper) and made cards which I sent to friends and family to make them smile. I love nature and started growing seeds in a little greenhouse Erik got me. I made a scrapbook about my experience in shielding and included photos of the things we achieved. 

Our new normal

Even now most restrictions have been lifted, we tend to spend our time at weekends walking on our local beach or visiting places with a picnic and flask so that we can avoid public places when possible. While others are getting excited for Christmas, ours will again be very different this year. Because of being vulnerable, I still won't be able to have lots of family together at mine. I'm not sure how that will ever be possible again. 

Everything I do, I have to make a decision about: do I go out, do I see my friends – even more so than before the pandemic. While it’s me that’s got CF and is post-transplant, Erik was shielding too. I feel completely responsible for Erik's life being impacted just as much as mine is. He had to stop doing lots of things, even once most people were returning to normality, as these things still posed a risk to me. 

With me being immunosuppressed, we can’t be certain that I have protection from the vaccines, which is why the MELODY study is so important, so people like me have those answers. We’re finding things hard with everywhere open and people free to do what they like, as the reality is very different for me and Erik.

Looking ahead to next year, I hope I get some antibodies from my booster injection which would protect me and enable us to do things together as a family and make memories.

Live your life to the full

I’ve spent many years raising awareness of CF and organ donation. I feel it is my job to highlight the possibilities of organ donation and living your best life despite the battles we face with chronic illness in our lives. I try to be as positive as possible and live life to the full and that would be my advice to a young person diagnosed with CF. Life is hard, but always worth fighting for. I’m grateful for every extra day I get with my family.

To find out more about the research study or to register to take part, please visit the study website: www.melodystudy.org.

Find out more about the MELODY study

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,600 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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