Transplant Work-Up

Time has not been my own, days and weeks monopolised by doctors appointments and hospital visits for tests. The transplant journey is definitely not an easy one, you would be amazed at the amount of things they have to test before you are even considered for listing.

I personally need a double lung transplant as I suffer from Cystic Fibrosis. Years of chest infections have resulted in irreversible lung damage, the only option I have left to me is to have a double lung transplant.

It is a fearful journey, almost a year ago I lost one of my closest friends, she was only fourteen months out of transplant - we thought she would have plenty of years with her new lungs but she was robbed, hence the fear I am burdened with myself. I also know that many people have survived for many years with donated lungs, but I also know that this does not mean we are forever healthy. We still have Cystic Fibrosis, it does not just affect the lungs; being a multi-system disease, we still have issues, so it is not a cure.

The tests which need to be completed before I can be listed are invasive, time consuming and frustrating. These include; heart scans, sleep study, gastroenterology review and gastroscopy, blood tests for a plethora of diagnoses throughout and at the final stages for tissue type and cross matching, mammogram, pap smear, dermatology review to rule out any form of melanoma, pneumonia, flu, Hepatitis B vaccinations, Mantoux test for tuberculosis, Cat Scans, dental review, MRSA swabs. All of these performed while you are feeling completely unwell, exhausted from just breathing and getting through every day.

What awaits me now is another appointment with my transplant doctors; all tests will be examined and a decision will be made about whether I am ready for the next step, an appointment with the transplant surgeons, who are your last port of call before being listed.

My fear is indescribable but I know this is my only chance at life; to spend time living without being restricted. Negative thoughts just have to be replaced with a positive, and a belief that this will work for me and I will get to breathe again and live each day without thinking too much about it...

© Leanne Demers 19^th August, 2012

Faith and Fight

I have discovered, just recently, that I face many hurdles. With a faith in myself to be able to get through each one, I face this journey. Faith to see the positive, faith to see the negative and try to turn it into a positive; faith to know which hurdles I have to face alone and those which I will face with my circle of friends; to learn to acknowledge the difference and ask for help when I don't have the courage to face it on my own. Faith to know what I can change and what I cannot; courage to face what I cannot change and learn to live with that, learning which obstacles I have to take responsibility for and giving back the onus of many other obstacles to their owners.

What I face now does not compare with shopping lists, what clothes I might wear today, those who are or are not here to support me. What I face is my own mortality, staring down the barrel of a gun, wondering if it is loaded. I can face this loaded gun because there is an option, although scary, the only option left to me. The loaded gun I stare into is a soul destroying disease called Cystic Fibrosis, it is insidious, it is relentless but it also makes me who I am - it does not define me. I can continue to fight to live but my fight is pointless when Cystic Fibrosis makes me a prisoner in my own body; to comprehend that fine line when Cystic Fibrosis has become the definition of you, because it controls everything you can and cannot do. It can never take away a will to live, but it takes away most of what modern medicine can offer for any relief and makes a mockery of the effort you put in to win against such a formidable foe.

My story now changes as I face a new chapter in my life; without medical intervention, a double lung transplant, I can no longer fight to survive this disease. I have to realise that I have not failed myself. My dogged fight has brought me this far and although the next chapter is ominous, I believe it can bring me through the next chapter, as long as I continue to fight; as long as I replace negativity with positivity at every turn; take the hands which are outstretched to pick me up, to smile in the face of adversity and do what I have done best my entire life - to fight for something better, to fight for life because it is precious and should not be taken for granted. To know that I can do this, with the people who choose to take this journey with me, to forgive those who choose not to be a part of my journey because of their own fears, and to acknowledge that this has nothing to do with anything I failed to do.

To believe in the strength that has brought me through each hurdle I have faced, and to know when I cannot find that strength, others will find it for me and remind me of it.

Often I feel like this is a journey I have to face alone as most people cannot even begin to fathom it; the fear, the disappointment; I also know I have to have faith in the people who stand alongside me, with no knowledge of the path we travel but with a united front; to make sure I have all I need and more, in the form of love, words, support and an undying faith in my strength - that which, I often think fails me when I need it most.

© Leanne Demers 18th August, 2012