On Thursday 9 February 2012 I was placed on the list for a double lung transplant. Having being diagnosed with cystic fibrosis (cf) at 6 weeks old, I have always known that I would never make old bones however the swiftness that my health has deteriorated has overwhelmed me and my head is still spinning somewhat.
I began working as a switchboard co-ordinator 5 years ago this month and when I started my job I was full of health and happiness, ready to start a new life for myself. I had just ended my marriage and had decided to create the life that I have always wanted rather than settle for the life that I had found myself in; marriage to a wonderful man but feeling more like his mother than his lover, working only one day a week just for pocket money and just a couple of friends because I was supremely shy and didn't make friends easily. Within the space of a few months I found myself in a new job that I loved with huge responsibilities, proudly becoming a single homeowner as I was able to buy my ex husbands share of our marital home and meeting and laughing with new people everyday.
I LOVED my life, there were no two ways about it. I LOVED it. I loved whom I worked with, I loved my independence and I loved the large circle of friends that I established because for the first time in my life, I discovered that people actually like me! Yes! They like me for who I am; silly, funny and dorky all rolled into one. And did I party. I had met my ex-husband and become engaged when I was 16 and Michael was 17 then we married at 21 therefore we never really experienced the party lifestyle that our peers did. I found myself in the wonderful position of being free to party and earning the money to fund it as well, yay!
Unfortunately a few years down the track I began an increase in hospital admissions with chest infection and my lung function started to decline and not recover even after weeks of intensive iv antibiotics. In my last admission I was given the news that if my lung function continues to drop at the same rate that it has been, I most probably have around 12 months left to live. Since March 2011 I had been undergoing assessment for transplant and I was told that because I was so underweight I probably wouldn't survive the surgery therefore they would not place me on the list until I was doing nasogastric feeds at night and I had put on weight. Therefore I commenced sticking a tube up my nose and down my throat, hooking up to a machine and being fed a ultra-calorie dense solution overnight. Thank goodness it worked and I put on 4 kilos in a week and I was then placed on the transplant list.
With cystic fibrosis, the body has to work so hard to just breath that it uses up all the body's energy just to take a breath and as the lungs become more and more diseased, they give off toxins which have an appetite suppressant affect on the body. Therefore I'm virtually never hungry and have to remember to eat. I was told that I would have to eat the same as a heavy weight boxer to keep up with the calorie requirements through just food. Up until a few weeks ago I had been working but sometimes I wasn't even up to driving to work so my fiancee Brad would drive me and pick me up. I made one of the hardest decision in my life to resign a few weeks ago and I miss my work and work family like crazy! I worked with an amazing group of women and there is not a day that goes past that I don't think of them.
So my goal now is to just stay alive and well enough to be able to undergo the transplant when I get the call. My days consist of physio treatments, being on oxygen, and naps with my incredible fiancee Brad doing all of the cooking, washing and housework. My gut tells me that I will only have to wait 6 - 8 months for lungs but the conservative estimate from the transplant team is 12 - 18 months.
Oh, and my beloved puppy dog Teddy will be laying next to me this whole journey!
love
K