Living with cystic fibrosis

I am a 22 year old woman living with cystic fibrosis. Two years ago, my condition deteriorated so fast that I barely realized it was happening ‘til my own death was staring me right in the face. Let me also say that I did not ever expect that it would be a liver transplant I’d have, as liver disease is a very serious but less common feature of the condition.

Cystic fibrosis is a genetic disease that primarily affects the lungs and gastrointestinal tract as well as the liver and reproductive system. If two carriers of the gene have a child then the child has a 25% (1 in 4) chance of being born with cystic fibrosis.

Because there is no cure, our daily routine involves time consuming treatments that help to keep our lungs clear as the build up of mucus can lead to recurrent lung infections that cause respiratory damage over time. While recently there has been positive developments in the treatment of cystic fibrosis showing significant improvement in symptoms in patients across the border, studies still show that lung transplantation is the best and most effective way forward for people living with CF.

I’ll never forget my friend Keely. She was the healthiest example of a girl with CF I ever knew. We wrote back and forth to each other on facebook as we could never meet face to face. She was younger than me and asked my advice from time to time. She attended a different hospital to me but I remember her telling me that she couldn’t breathe when she stood up and her doctor didn’t believe her. If I’m honest, she was young and I thought she may be slightly over exaggerating too. Her O2 was in the normal range, and she was hardly ever in hospital.

To look at her you’d say she was the picture of health. About two months later Keely was transferred to St. Vincent’s where I attended. She had one to one nursing and was on 24 hour oxygen. Immediately after assessment she was placed on the list for double lung transplant, but it didn’t come on time and she died. This illness is a cruel one and it never lets you forget that it can claim it’s rights on you at any given time, without shame or a hint of remorse. When it takes you, it doesn’t just take you, it takes your family, your friends, the nurses who looked after you, the nursing staff that fed you, the man who gave you his heart and the acquaintances you made that you never thought were important.

Worrying about the future

I never worried about what the future held for me ‘til I was facing the fact that I might not live to see it. In December of 2011, I was put on the list for a liver transplant and remained no.1 on the list for eight months in both Ireland and England. I was never a religious person but found myself praying more than Pope John Paul and making promises to God that I knew were unrealistic and I would never be able to keep.

Naturally, I became depressed and started thinking of ways to end my life, I felt so sick I didn’t think I could endure any more pain, physically or mentally and had some other personal stuff going on at the time. The only thing that stopped me from overdosing was a conversation I had with my sister two weeks before, and the fact that there had been two suicides in my town that week already. My family had been through enough and I didn’t want to be looking down on them drying their tears.

But desperation changes a person into anybody but themselves, it makes you do and say things you wouldn’t normally think of. I felt like I could not take anymore but I decided I had to take control and change my point of view.  During the wait I had two major scares that set me back and made me inactive on the list. After that, I fought hard to stay well enough to have the operation but after the second scare, I honestly thought it was game over for me and had accepted it. Two weeks later I was brought into theater and my life changed from then on. It’s amazing what the brain has the capability to overcome.

I thought that these things only happened to other people and never me. I knew the likelihood of needing a transplant some day, I just didn’t ever want to believe it. And why did I get mine and Keely didn’t get hers? It’s not fair, but that’s life and life is not fair. Someday I will probably need a lung transplant (taking into note that I say probably because a part of me is in denial) but that’s a bridge I’ll cross when I come to it. Even now, I think I’m the only person in Ireland not freaking about Ebola… because somehow my mind still refuses to believe that anything like that could happen to me.

But anyone, any age, at any time, can end up needing a transplant. Sometimes there is no red light to give you the warning. Keeping so many friends in mind that have reached heaven’s gates before me, that waited on lists til they were wrongfully forced to draw their last breaths, I think of each and every one of them and know that I am lucky.
 

Why become a donor?

Last year, there was a significant increase in the number of transplants that took place throughout the country. A whopping 293 people received transplants last year compared to 275 in the year 2011 according to The Irish Kidney Association.  It was a ‘record year’ for life saving operations and that is exactly why it is so important to continue to spread awareness about organ donation in Ireland, in particular amongst our young people. There simply aren’t enough donors for the volume of people needing organs, and all that it means is that people are dying because of it.

Currently in Ireland, you must indicate your wishes to be an organ donor before your organs can be retrieved and used for transplantation, whereas other countries are following the ‘opt out system’. I believe it will only be a matter of time before Ireland follows suit, but for now all we can do is encourage our fellow citizens that, morally, donating your organs is the best thing you could ever do.

Because why not? Your organs are of no use to you when you die but could serve huge purpose to someone who is very much in need. The gift of life is the most selfless act a person can commit to of which it’s meaning and importance can have no limit on value. To receive it is the greatest feeling of all time. I can’t think of anything more satisfying than knowing I have benefited somebody else’s life.
I am sending out this message as a plea to anyone out there who is not an organ donor already to become one, and because it’s the least I can do as an advocate for the people that lost their lives waiting for organs that could have saved them. You could save up to 8 lives like mine and people like me, and that’s a pretty remarkable legacy to leave behind!

To become a donor, free text the word DONOR to 50050. Donor cards are available from local pharmacies and doctors surgeries and you can also indicate your decision to be a donor when applying for a driving licence. Don’t forget to discuss your wishes with your family.