I officially went on the transplant list for double lungs on the 4th of September.
At first, I was anxious. I would go to bed each night and whisper in the dark – “Please don’t get the call tonight! I’m not ready.”
Fear of receiving the call for such a massive operation is overwhelming.
Some nights I would lay awake and think until early hours of the morning, or fall asleep crying, tears running into my hair as I lay on the pillow praying that I would miraculously repair my heart and lungs and not need to go through this anymore.
Its October. I know it hasn’t been long….. but the journey since March 2020 has felt like AGES! I have been unwell for the longest time and its taking a toll.
Some people get the call after a few days and some many, many months later
I often wonder, how will my story go?
Am I one of the ones that gets the call during the day with time to take a shower before I leave? Or will I be called early hours of the morning and told to hurry?
I have a different prayer now days, when I go to bed each night. I want the call. Please God, let my lungs be next.
But then I remember someone has to die for me to get them and I wish the person with the lungs I’m going to receive, more time. I send them love and hope that they are ok and making their life right before they pass.
I’ve been idle since March 2020. My ability to move has decreased and I get breathless easily. I’m reliant on assistance for so much.
I think I’m at the point where I just want to start another chapter, but cant.
I cant move forward with some major changes I want to make – because I need energy, I need to be able to breathe. I need my independence back.
Sadly though, I’m going to be even more reliant on people around me before I get my independence back. This alone has been a very difficult thing to digest, accept. Tears are streaming as I type this part of the post. I hate needing people. I really hate it.
Its not ego. Trust me – I’ve done lots of reflection on that. Its transactional love that I struggle with. Needing help comes with conditions in some relationships, even from people that claim to love you the deepest.
Being reminded regularly of sacrifices people are making around me and some even taking over and treating me as incapable.
Its my lungs and heart that need help – not my parenting or ability to think for myself.
Some people have used this time that I’ve been vulnerable as the perfect opportunity to discuss what they don’t like about me. Or what I could of done better.
Some friends have stopped calling and texting and think that’s what I need right now. Alone time.
Some have avoided me because they don’t want to deal with it, it stresses them out and they will see me when its all over.
Before my heart failure, before the health decline.. I didn’t really need a lot of help. I was always out and about, juggling work and life. My load wasn’t light either. But I managed to catch up with people, I did random acts of kindness. I was involved in causes and made each day count.
I wore many hats and played many roles.
Now days, I’m sitting in a body that cant do a whole lot.
Don’t get me wrong, I don’t miss the part of my life where I was running around like a headless chicken. I didn’t listen to my body much, I kept punching on.
Some days, like today –
I miss being able to get into a car and drive wherever my heart desired. I miss being able to walk without oxygen and needing a wheel chair and someone to push me.
I miss deciding my dinners and where I was taking my son after school.
I miss meeting up with friends and having coffee or dinners.
I miss waking up and not feeling like Im ready for bed again.
The list goes on.
So, this post took a different turn to where I was headed when I started out. Let me get back to what I wanted to say originally.
While waiting on the transplant list, I’m always looking at my phone making sure I don’t miss the call.
Waiting for a transplant has so many mixed feelings attached to it.
Accepting that someone has to die for you to live.
Being shit scared of the operation, but knowing you need it
Making sure you’re in a position at all times to get to the hospital when the call comes through.
Possibly having my son with me at the time of the call, I need to make sure I have somewhere safe to leave him. Making sure someone is cuddling him. Knowing he is being loved while I cant be there. Someone to reassure him that its all going to be ok. Not project their fears onto him at his most fragile moment.
Then there is the question – Am I one of the lucky ones that get to come out alive? Will I be OK? Or is this my goodbye?
Once again the list goes on with all the things one needs to consider when on the list.
To anyone out there on the list. What ever the organ you are waiting for. I send you love, wherever you are.
I understand. I get it.
Sending you strength, courage, and patience