When I was born in 1979, I was rushed to a specialist hospital to have part of my bowel removed as I hadn’t passed the meconium (the sticky substance that lines a baby’s intestines in the womb) that new-born babies should. After unexpectedly surviving the lifesaving surgery, I was diagnosed with the recessive genetic condition known as Cystic Fibrosis. In those days very little was known about CF and my Mum was told that babies born with CF, didn’t survive! 
 
However, I defied the odds and have been extremely blessed to lead a life filled with travel, finishing education with two science degrees, setting up and running my own businesses, practicing as an osteopath, health coach and an NLP professional, getting married, being widowed and fortunate enough to find love again and remarry. I absolutely love the life that I’ve built and the adventure that it has been.

Unfortunately, life did take a toll on my lungs

After 36 years of regular lung infections that caused significant progressive lung damage, I developed double pneumonia in October 2015 and wasn’t expected to survive. When I did, it left me with extensive lung damage, requiring full time supplementary oxygen and a non-invasive ventilator to stay alive. Over the next three years my health decline at a rapid rate. By 2017 I needed full time care, full time non-invasive ventilation and excessive levels of supplementary oxygen and I couldn’t do anything for myself physically. My sister took 6 months off work also to care for me. 

Receiving my lung transplant in the nick of time

After almost a year on the transplant list I was transferred to intensive care and elevated to the urgent transplant list. Then one day in October 2018 I got my call for transplant after being on the urgent list for over two weeks. I would note particularly that Dr Andy Jones and Dr Anna Reed went above and beyond to enable me to be elevated to the urgent list and ultimately enabled me to receive my transplant in the nick of time. 

When they put me under anaesthetic my own lungs completely failed and they had to put me on an ECMO machine to keep me alive while they removed my CF lungs. My carbon dioxide gas levels in my blood were so high that it took them over an hour to stabilise my gases, despite their levels the decision was made to go ahead with the transplant and give me a chance. As they began the removal of my CF lungs, my body went into septic shock – the surgeons somehow managed to stabilise me yet again and finally were able to transplant my donors lungs. 

My post-transplant recovery was almost miraculous. I responded well to transplant and with daily support from my husband I rebuilt my muscles in my legs. I relearned how to stand, walk and climb stairs to be allowed home 3 weeks and 5 days post surgery! I am now blowing over 120% lung function consistently. I really do count my lucky stars with every single breath. 

I want to say thank you to everyone at Royal Brompton Hospital (that cared for me over the years) and Harefield Hospital (where I had my transplant) for everything that you do, and to remind them that their work over my lifetime so far has not only saved my life on multiple occasions it has supported and enabled me to live a full life alongside the challenges that CF has brought 

As a result of my transplant, my life has now been transformed and given me a quality of life I could only have dreamed of. There aren’t words to describe how grateful I am for the care I have received and continue to receive from RBH. 

Contacting my donor's family

I know how fortunate I am to be able to celebrate my two years of a life that I would not have had. I have been thinking about my donor’s family as this month marks two years of a daughter being without her mum, a mother without one of her daughters, a sister is without her sibling and a gentleman without his life partner. 
 
A while after my transplant I wrote to my donor’s family to thank them for their selfless decision that saved my life. I didn’t know if my donor even had any loved ones and thought it unlikely that I would ever hear from them if she did. Five months later, I received the most beautiful letter that I now treasure, telling me all about my donor and what an incredible lady she was and how she helped others in her work. 

The fact that her family found comfort in donating her organs and their hope that I use my fabulous donor lungs to laugh a lot makes me even more determined to do just that! 

My donor’s family shared this quote with me... 

"Organ donation is not a tragedy, but it can be a beautiful light in the midst of one. To know that our loved one has gone on to save lives brings us that light"

My hero donor and her family are constantly in my heart. Without them saying yes to organ donation I wouldn’t be savouring every sweet second of my second chance at life. 
 
Organ donation really is the greatest gift.

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