As darkness descends, a darkness we could never have predicted, we face our biggest fight yet. To even fathom the fight ahead is exhausting, to feel that fighting may be in vain, but to know nothing other than fight is what may see us through this journey.

How do I step into this battle with so little energy? How do I fight when I feel like my hope has been shattered, dreams taken away, left floundering like a fish out of water. I can only draw on the strengths I have used all of my life and to rally the troops around me as I face this next battle - 'united we stand' is perhaps what I draw strength from; to know that I am not alone, whatever the outcome.

Some days I feel like giving up, sometimes it all seems too hard to even face but when determination greets me at every turn, it seems I cannot give up or give in anyway. I look upon a face that loves me through all the turmoil, friends who keep turning up at my door, a puppy that makes me laugh until my sides split and although I really don't know how to face this next mountain, I know I am not alone as I put one foot in front of the other and continue on....

© Leanne Demers 21^st August, 2012

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