I have been following a young girl with CF on Facebook for quite some time, watching her as she waited for the all important-life changing call for “new lungs”. Her comments were always short, a simple message of hope, courage and optimism, often quoting a well known passage from another time.
As I follow her my thoughts wander to the time I will also be making this journey. It is a strange place to be, seeing many with CF battle against tremendous odds to stay afloat a breath away from the inevitable.
It has also been an opportunity to think about what I might want as the decline in my health occurs. Seeing so many people in the Alfred hospital going through end-stage disease including CF, cancer, COPD etc. What has become clear is my desire to create an openness around my journey that allows for positive experiences for my family and friends.
People coping with illness can become very isolated not because of the logistics of the hospital, more often because of a lack of communication with their health care team or their family and friends. For this reason a blog seems like a great tool. I hope to be able to create a number of avenues to make communicating my journey seamless and inclusive.
Their are many topics we all think about but are afraid to bring up “the elephant in the room” so to speak, e.g. death, dying, transplant, cancer, our wishes. It is my hope that topics like these will become part of a natural conversation we might have, it does not have to to be such a dark and scary place! I would like to think that there are positives and humor in everything, we just need to know where to look.
CF can be relentless and all consuming particularly if you are acutely unwell, this is why it is so important to maintain good mental health. Fortunately the CF team includes a mental health practitioner. I meet with Anthony a gorgeous psychologist regularly for support and to explore my beliefs, fears, thoughts and observations.These conversations are a mix of laughter, tears and discussions about what my future might look like with CF.
Spending so much time in hospital in an acute ward, can be challenging. You are exposed to many difficult situations, some patients can be really unwell with complex medical conditions. Over the course of my life most of the people I had meet with CF have now passed away, I think about this often, knowing how incredibly luck I am. Having someone you can talk to that understands issues you face having an incurable, life threaten condition can really help, this ensures I am at my best to deal with the challenges I may face in the future.
On a positive note I am not there yet and intend to fight all the way. Physiotherapy, exercise, antibiotic management, diet and nutrition are the main treatments for CF. I am in talks with my team regarding gene therapy and I hope to be accessing Orkambi a new medication for people who have two copies of the F508del mutation (F508del/F508del) in their CFTR gene. Stay tuned and “watch this space for more updates on this!
Photo- Gregory Colbert – ashes and snow