I was asked by Vicky Petterson if I would consider telling my story, I’ve pondered long and hard about it as I’m quite a private person, but in the end I obviously decided to go for it!
I have Cystic Fibrosis, I was diagnosed on my 1st birthday, not your usual 1st birthday present, but definitely a memorable one, well for my parents anyway, that was 33 years ago, but CF has never defined me, I have my parents to thank for that!
Obviously I have only known life though the eyes of a person with CF but from the moment I was diagnosed my parents ensured that I was Helen first who just so happened to have CF. As a result I’ve never been wrapped in cotton wool and have never let CF hold me back, it’s kind of been the other way round with me keeping CF back and being its obstacle for as long as I can remember!
I have an older brother who doesn’t have CF, but we were always treated the same, I was a competitive (and probably annoying!) sister, probably too competitive, a trait maybe influenced partly by the CF, partly from my family, but wherever it comes from I feel it has helped me throughout my life!
One of my earliest memories is lying on a the sloping couch, also known as the ‘tipping frame’ having ‘physio’ with my mam or dad singing at me so that it would make the physio appear to go quicker! As a result I think I knew every nursery rhyme known to man, and probably some made up ones too, the good old meatball song is still a particular favourite to this day!
I enjoyed school and my CF didn’t affect my school life too much, I wasn’t (and I’m still not) a one for letting people know about my CF, which is why I took time to decide to write this, I would always have my check ups after school. I would go swimming several times a week to my local swimming club and competed in galas regularly, this enabled my competitive streak to show itself again, of course I was always a better swimmer than my brother, and the competitor in me while swimming helped bring it out in me in my every day life too, I figure it must have played a huge part in keeping my CF stable for many years.
I was determined not to be off school, so much, so I was one of those swotty geeks who never had a day off school! I got a prize when I left school and everything!! I realised when I was older that was an achievement as well as a tad nerdy!! I’ve always had a good sense of humour, I think humour has helped me throughout my life so I aim for my sense of humour to remain with me at all times as it’s proved to be a great help to me up throughout my life!
It was going to all my checks ups throughout my younger years which helped me decide that a career in Nursing was what I wanted to do, I did originally want to be a doctor, ” but a lady one”, as I apparently told one male doctor when I was very young! However that changed as got older to wanting to become a Nurse. I enjoyed my Nurse training and qualified in 2001, again along the way not telling anyone about my CF, I was used to that by then, I had perfected over the years to take my tablets with my food without anyone noticing, it was quite a skill if I say so myself, it took my friend who trained with me about 3 years before she noticed and asked me what the tablets were for.
I think it was after I had qualified as a Nurse when I started needing prophylactic IV antibiotics, so initially I had my IV’s through cannulas, this meant I couldn’t work while I was on them, as they were in my hands or arms and due to that being an infection risk, and a slightly odd look for a Nurse to have at work, I would be on holiday while I was on them, again it allowed my CF not be an issue with work. After a few years I had my portacath fitted, this meant I was able to stay at work while on my IVs, the only downside was I had to work unusual shifts so that I could start later and finish earlier to help me fit in the IVs before and after work, and this meant my secret was out and everyone knew when I did the unusual shifts it meant I was on IVs! Still it meant it had IV free holidays after that-bonus!! I’d been qualified a few years when I noticed I was getting slightly more tired and a bit short of breath, I was admitted to hospital, I had only been admitted once before at 1 year old when I had pneumonia, this was when I was diagnosed, so this was only my 2nd ever admission, it was due to an exacerbation just before I moved jobs and started on a new ward at a new hospital, but after a spell in hospital I was soon out and back at work full time being the Nurse and not the patient! It was a few years later when I had my next admission to hospital, I’d kept working full time as a Staff Nurse on an extremely busy Stroke Ward, but noticed that I was getting more and more tired, and short of breath and it was getting worse and my already poor lung function was worsening rather than returning to its already low function. While I was in hospital my doctor said the time had come and I needed to be assessed for a lung transplant. I remember thinking at the time that it was strange for me to hear this and it was difficult for me to accept the news initially as I had been working full time on a very busy ward up until a few days before I was admitted then suddenly I was in hospital and on oxygen 24/7 and told everything was on hold and going back to work was out of the question.
This time I knew my CF was playing a bigger part in my life, up until then I had been able to live my life with CF being the passenger now our roles had reversed with CF very much being the driver, still I was determined more than ever to be back in control again in the future!
So I was now off work, that was frustrating enough but I particularly disliked wearing my new accessory, the oxygen, obviously I understood it was necessary and that it was helping me, but I never like to be noticed and looked at and I found out when I went out it attracted a lot of unwanted attention, in the past even when I was on IVs I only needed to let those know who I chose to but this wasn’t the case with the oxygen, not so easy to hide something on your face 24/7!
3 months later I had my assessment to see if I would be suitable to be placed on the active transplant list, 3 months after this I was told I was on the active list, and then to my amazement after another 3 months I had the call which changed my life.
I went into hospital in September 2011 and had my double lung transplant, after a few hiccups, I was able to return home after 3 weeks and start my recovery and continue my life.
I returned to work as a Staff Nurse 8 months after my transplant, and I am very pleased to say that I have remained my swotty self and I am working full time and have not been off work since I returned to work just over 2 years ago!
My mottos in life have always been ‘everything happens for a reason’ and ‘there’s always someone worse off than yourself’ as a result of thinking this way, I always try to overcome anything in my life by tackling things head on and with determination and positivity, CF has not been an exception for this way of thinking, I have found being like this has helped me throughout my life so I’ve decided it will be a good idea to keep it up!
Following my transplant it has got me thinking about doing things in life that I would love to do, and I now refuse to make excuses and put things off in life which I’d like to do but haven’t done anything about, in the past I maybe wouldn’t have done anything about, in my case writing, I haven’t done any writing courses…yet, in fact this is the first piece of writing I have done since school and university, though this time it’s through choice which makes a difference! I feel very strongly that you should never regret trying something new and seeing how you do, rather than end up regretting not trying it at all!! Any feedback regarding my new venture of writing will be greatly received!!
My donor and their family have enabled me to keep living so out of respect to them I intend on living my life to the full. Words of gratitude and eternal thanks will never seem enough for the selfless act which I received from my donor and their family, and I will never stop recognising that it is due to them that I am here, writing this and making new memories and living my life to the full, these thoughts will never ever leave me.
Thank you very much for taking the time to read my story.
Take care. Helen.