“When did your mum tell you she had CF?”
I’m not sure she ever did or, perhaps, she constantly did, it is hard to differentiate these two things. From the moment I could walk, before I even uttered a sensical word I knew not to touch her medicines or equipment. She told me they were important for her health but dangerous for mine. She would sort through her tablets, explaining what each one was for. That stayed the same most of my life. She would explain that she had to be admitted to hospital sometimes because she is “different to other mothers” she has “CF” and that means “sometimes she is sick and she has to let the doctors take care of her” and this was enough for me. It was enough to me until I was 6 or 7 and my uncle, who also had CF had just received brand new lungs. He was so sick just before the transplant, unlike my mum who was running around after me and swimming every week.
She thought this would be his big break. His freedom. His life. We all did. We rooted for him. A few weeks later he died.
I couldn’t understand any of it. “How could he die? The operation was supposed to make him better? How could this happen?” It was during this period I started to think: “If he died, could my mum die too?” She explained that he was much more ill than she is but there is a serious probability that one day, she too will be that ill. Initially, I was so shocked I couldn’t ask anymore questions, despite my parents best attempts to openly talk about. Eventually, I just stopped believing it. She was too strong, too healthy, too stubborn to ever be that ill.
There were moments that made these words echo in my ear like a cruel joke. Moments when I saw her slip through my fingers and barely just make it back.
Eventually, as more of our friends and family got more and more ill and passed away I realised that maybe it didn’t matter how strong or stubborn or lucky she was.
Those dark thoughts were part of normal daily life and learning to compartmentalise at times was important and often necessary.
Five or so years after the passing of my brother my health was up and down. I was in and out of hospital quite a lot and my lung function was deteriorating. I was frequently coughing up a lot of blood, losing substantial amounts of weight and I had to have a G-tube (feeding tube) inserted.
I had a chat with my Consultant on Valentine’s day 2005, he sent me an official appointment, which was rare as I normally just saw him at the monthly clinic so I knew something was up. He announced that I would require a lung transplant due to the constant blood loss and being unable to seal the bleeding areas. In that moment I felt taken aback. This would mean I had a choice, risk a transplant and hope for the best or just lose myself to Cystic Fibrosis. With the transplant I had a chance at a new life, a chance to feel the air power through my lungs or the risk of death, just like my brother. I decided to go for the transplant there and then. I didn’t need time to think. I had thought about all of the potential options numerous times and weighed up the pros and cons. I knew I had to do it. A successful transplant would mean giving my daughter the mum she had always wanted. Being able to keep up with her, run, swim, laugh, travel with her. It would mean a new life for all of us, a better one. Heck, it might even mean I will be around much longer than I could have ever hoped.
Telling my daughter was nerve-wrecking. She was only 11 years old. I was dreading explaining it all to her. She had seen the devastation my brother’s passing caused, she knew how serious a transplant was. She was so young and innocent, too young to lose her mother. When I broke the news to her the first thing she asked was ‘why?’ Followed by ‘Is there a chance you will die like Maurice?’ I answered all of her questions honestly. She was strong. She was brave. She didn’t cry. She simply accepted the answers I gave her and gave me a big hug. Ten minutes later she was back to playing with Barbie dolls. Watching her, sweet, tiny playing away, blissfully hopeful killed me a little. Did she really understand what I was saying? Is she nervous?
I went for my transplant assessment in Newcastle, England. They checked out if I was sick enough for a transplant and if I was well enough to make it through the major surgery. Being in the Transplant wing made everything so real. It was no longer just this fantasy of a new life with new lungs. Now it was a drastic choice with numerous drawbacks and downfalls. I could die. I could genuinely lose my life. What would my family do then? How would my own parents feel losing another child the same way they lost the first one?
I chose not to visit the room Maurice was in post-transplant as it would bring back too many heart-breaking memories.
So now we played the waiting game. They told me I could get the call at anytime. I had my bag packed and ready to go….
-Alison & Christina.
You can follow me on twitter @Christina1Kenny. I tweet about life with a mum suffering with CF! -Christina.