I’ve been on the transplant list since the beginning of September this year.
In and out of hospital all year. Should have gone on the list alot sooner
It took alot of work with my psychologist to accept that I need a double lung transplant.
At first I was in denial. Then anger, Depression, then bargaining and now Acceptance. This whole process took months.
Just like the diagram below
I honestly thought that I was going to miraculously bounce out of bed one morning and a miracle would occur. I really did think I was going to be a rare case and the Dr was going to say “Oh, a miracle has happened and you are FINE!!
That hasnt happened.
Instead, my health is slowly declining
Tasks like showering, Pulling the sheets up on the bed, making a cup of tea, laying in bed – all difficult.
I walk 1,000 steps on a good day and 0-200 on a bad day (toilet breaks)
For months I’ve been waiting for the call from the transplant team
I know they told me that some people wait a few days and others months
I began living around the call
Phone always beside me incase the call comes through
Sitting around watching heaps of Netflix because “Whats the point of doing anything?”
I stopped speaking to friends incase I pass away – Its easier for them
I spoke of death and the transplant ALOT
I was scared to commit to plans, just incase
I was staying uncommited to almost everything, just incase
I was even getting organised for my departure.
I am always tired. I have a cough now. I’m always tired and pale, I’m loosing memory at times, my tolerance level has decreased
The other day I called the hospital, after being sick and struggling for 5 weeks, I asked them if I could come in and speak to them and I explained the symptoms. I had tried to get better on my own with the feeling of suffocating, but every time I lay in bed (with a wedge to sit me up slightly) I cant breath and I feel squashed inside
My transplant Dr got frustrated with me. He told me the organs could be 2 years away and there was nothing he could do
I told him I cant wait 2 years. Why arent I a priority based on the situation?
Apparently I was a priority
He told me to go to my local hospital if I needed to. I told him the local hospital cant help me
He didn’t respond and then dragged out an ooookkkkkk
It hit me like a slap to the face. A really hard slap, the type that leaves you dizzy
They dont give a f*ck
This is a job for them
I’m a number in a system that goes on algorithms
Just like that.
Like being at the RSL club waiting for the buzzer to go off when your food order is ready
It doesnt matter if you’re hungry, you must wait
When you ask the kitchen if your foods ready – they tell you to wait with your buzzer
After sitting in bed for a few days and sleeping between the crying… I had realised I was sorta on my own, I had an “aha” moment
I got mad. I got into a F*ck them mindset
Im not waiting anymore!
I’m going to continue living and when I get the call, then I get the call
I’m NOT going to have a hospital bag packed
I’m NOT going to give up!
I’m not going to have my funeral planned
I’m also not going to write goodbye letters
SO, letting you know……I’m back
I have shit to do!
I still cant walk far and I still have the cough
But I feel different in my spirit
Just when I thought I had “let go” I realised I was still trying to control the outcomes
Thank you Dr ICE
You slapped me back into my life
Until next time!