‘When did she tell you?’

“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.

-Christina.

Watching Great Ormond street.

Great Ormond Street: Lung transplant edition.

Did you all catch Great Ormond Street last week? If not, they did an episode on Lung transplant and had several Cystic Fibrosis patients in need of them. It was an incredible episode. We all sat down as family to watch it. Snacks in hand, edge of our seats, eager. It was insightful, touching and interesting. We watched the journeys of the children as they deteriorated until they required a transplant. We then got to witness their time on the waiting list, the actual transplant and the after-math. Some stories were easier than others but all were gripping and heart-breaking. As I watched I was surprised I could so easily relate to young children. Having been on the transplant waiting list myself many years ago I could see myself in them. I could relate to the fear and hope in their eyes. I could feel a little bit of myself in each of them. All hoping, wishing, dreaming for a better life but all scared to death it might be snatched from them too soon. Being an adult in the same situation is not much different. I was amazed at their strength. Would I have been that strong at fourteen or twelve or eight? I don’t know. I hope so. Am I that strong at forty-five?

They were inspirational and impressive beyond words. We watched their struggle in our warm, lamp-lit sitting room, each of us with tears in our eyes. It was fascinating to see the aftermath of the transplant and how they each overcame different complications. It made me think of what my own life might have been like if I too had been lucky enough to receive a lung transplant. What would I be like now? Would I be running marathons and going deep sea diving? Would I be lying on a sun lounger somewhere in Italy with a smile on my face remembering my struggles like they were someone else’s? I don’t know. I can only dream now. I try not to because it hurts. It makes me sad and it makes me angry as I sit here, finding it hard to catch my breath. I get angry at life. I get angry at myself and I get sad that this is my reality. The anger usually passes and I learn to feel happy, grateful and appreciative that I am still here. I am still alive. I am sitting here, lucky enough to hear my daughter singing along to Lorde and my dogs begging for treats. I am blessed.

I couldn’t help but think that the Great Ormond street episode would be more interesting if we were able to see the actual struggles involved in the surgery. I would have loved to have seen how difficult it was to even remove the hardened, mucous-filled lungs from the ribcage and chest cavity. The episode mentioned how long the procedures were but we did not get to see the actual surgery and all that it entailed. It would have been remarkable to see all of the gorey details.

Tonight I am blessed. Tonight I am humbled.

-Alison.

“With my last breath, I’ll exhale my love for you. I hope it’s a cold day, so you can see what you meant to me.
” ― Jarod Kintz, This is the best book I’ve ever written, and it still sucks

*** Follow our journey on Twitter @Christina1Kenny***

Instagram: christina.kenny


  

No transplant, no way.

When I was told that my mum could not and would not receive a transplant I was heart-broken and relieved. I was heart-broken for the obvious reasons. My mum will die much sooner than she should and Cystic Fibrosis will kill her. I was relieved that we could throw the darn transplant phone into some river and not feel so edge every time it beeps or moves or anything. We could eat dinner without glancing at the phone every five seconds. It was a mixture of feelings. I thought ‘maybe this is good because if my mum was called for a transplant in the morning and she didn’t make it through the surgery she would die far sooner than I ever imagined but maybe now we can have a few more years together?’ But then I thought, ‘no, this is terrible. This is unfair. I am going to lose my mother and there is nothing I can do about it.’

There was no correct way to feel. More than anything though I felt kind of numb. I had numbed to the whole situation quite a bit. It is almost like I was so accustomed to hugely, disasterous bad news that I didn’t even flinch anymore. It was at the point where good news would shock me more than bad. Depressing, hopeless news about my mother’s health had become my new normal. It was bleak but it was my life now. So now what? We wait for her to die? We start living? WHAT?

Now I had a choice. I could spend the rest of my time with my mother moping, feeling sorry for myself and constantly asking ‘why?’ Or we could get busy living. Now I knew our time was limited I needed to know things. There were future questions she wouldn’t be around to answer, future advice she wouldn’t be around to give. Now was my only chance.

I started to ask every question I had ever wanted an answer to ‘How do I know when someone is ‘the one’?’ ‘What age is a good age to get married?’ ‘Should I adopt kids one day or have some biological ones?’ It was intense. She made the decision to start a scrapbook answering all of these questions, a book I could look back on when she wasn’t around to give me the answers I needed. I still haven’t read anything written in the book. Today isn’t the day. I don’t know when that day will be but it will be soon, more than likely.

“How wonderful to be alive, he thought. But why does it always hurt?” ― Boris Pasternak, El doctor Zhivago

-Christina & Alison.

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***You can follow our journey on Twitter @Christina1Kenny*** – Christina.

Waiting to live.

Over the next two years, I waited. I carried my ‘transplant only’ phone with me EVERYWHERE. Even to the toilet, no joke. The Transplant team even had our home number so at the start, even when we got a call on the landline we all jumped, seems silly now. If it was late at night and we got a phone-call we would freak out. We would all wake up in an instant and think ‘who else could be calling at this late hour?!’ Panic would immediately set in as we all shuffled to get to the phone as fast as possible and then throw it around trying to get someone else to answer it. Weeks and months passed with no phone-call. However I met with the transplant team at regular intervals to check I was still fit enough to survive transplant. Around the same time one of my friends was also on the transplant list, which was a huge comfort. It meant I had someone to talk to about it, someone else who understood just how nerve-wrecking the whole thing could be. Every time I was at the clinic I would see her and we would catch up on each other’s progress.

Then one fine day during Summer, I was driving to collect my daughter from school. The sun was shining, the air was hot and the sky was cloudless. It was one of my better days. I was well today. I was alive and I was wearing a short Summer dress. I wished everyday could be that kind to me. Then, the transplant phone rang. I nearly had a heart-attack. I suddenly pulled over on the side of the road, like a total maniac and grabbed the phone from my handbag. Private number. I thought, ‘Oh God. THIS IS IT.’ I could feel my heart beat in my throat and my hands were trembling like never before. I answered the phone only to hear the man on the other end had a British accent, THIS IS DEFINITELY IT. Then he proceeded to ask ‘Is Kevin there?’ Wrong number. In my manic state I was so angry. I was shaking, I was crying, my heart was pounding. I started lecturing the poor man about how important this phone was and never to make the mistake of calling a wrong number again! I was manic. The guy was so apologetic. I hung up in a fury and took a deep breath. Is this how I was going to react if this was the real deal? Verbally abuse someone down the phone and almost vomit with nerves? Oh God.

After this I continued to wait, everyday. I waited. I checked the battery life and signal strength of the transplant phone at least once every two hours. It was exhausting. Like waiting for a bus in the rain that you can never see coming. Some time later I met with my consultant told me my friend got her transplant and was doing well. I was delighted. I was happy for her but I was a little sad for myself too. Is that bad? I couldn’t help it. What about me?

A few days later I decided to call the Transplant wing in Newcastle to see how my lucky friend was doing! Was she walking yet? Was she breathing in fresh air like a normal person? Was she feeling more alive than ever? The transplant co-ordinator promptly told me to contact the hospital and ask them. That was strange. Why? Things like this had never been an issue before, why now?

I rang the hospital as instructed and they announced to me that she had passed away. My heart almost stopped. They went on to stay her cause of death was the same as that of my brother. Her Cepacia had colonised and infected her new lungs. She was gone. That was it. Just like that. I didn’t really know how to feel. I was annoyed with myself because I was wishing it was me when I heard she got the call, how selfish it that? The poor girl lost her life and I was jealous of the life she could have lived.

I stayed on the transplant list for another few months until one afternoon in August 2007 when I got a call. I was told they were no longer going to transplant anyone who is colonised with Cepacia. That included me. That was it. It was all over for me before it even began. My dream of a new life, a new me had crumbled before I even got the chance to build it. I felt sorry for myself, I felt distraught, confused and concerned for my family, especially my daughter. Now what? I wait to die? How do I tell my young child that? What do I say? How long? How long do I have before my own lungs kill me? Now I have no options. I now know I am dying and there is nothing I can do. I can’t accept this, how can I? I am young, I have a child, a life, a family. Mere minutes before the phone-call I had options, choices, chances and now that was all ripped away from me. My fate now was decided and certain. I will die. Maybe not today but some day and time is not on my side. I will never have that inspiring, fairy-tale ending.

-Alison & Christina.

It took me quite a while to stop watching the phone. Maybe it was just habit or maybe it was hope.

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**You can follow me on Twitter @Christina1Kenny to follow our story.** -Christina.

Is it my turn now?

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.

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You can follow me on twitter @Christina1Kenny. I tweet about life with a mum suffering with CF! -Christina.