I didn’t know where to start with this post.
I didn’t know how to get a heap of emotions, advice, information in one post.
It all began when….
I went to the supermarket one Sunday, pushed a trolley heaped with groceries as normal…but this time I began to black out, legs turned to jelly, loss of eye site momentarily. I experienced something I hadn’t before.
I managed to compose myself and slowly pushed the trolley to a seat.
I called my husband to come help asap and I sat on a shopping centre chair sobbing. I knew something bad was happening to my body. People were staring, some asked if I needed help, but I couldn’t stop sobbing.
For weeks I had a pain in my back and trouble breathing. I thought I had a chill and slept with heat packs and smeared muscle cream all over myself.
I couldn’t sleep laying flat and each day I lost more and more energy. I was loosing appetite and I was bitter. Tired and bitter.
Despite COVID and my attempt to avoid going to the hospital – I ended up in Emergency in April, after 3 days in bed and gasping for breath going to the toilet.
I discovered I was in right heart failure.
My lungs don’t work the best, even on full-time oxygen….and my heart is pumping away each day working its ass off.
Until it couldn’t successfully anymore.
I spent five weeks in hospital processing the news that I was dying and fast.
Heart failure, liver failing, lungs not working anymore.
Tranplant talk, urgent tests, new medications trialled. Side effects to deal with.
It was chaos.
The only language I spoke for weeks were tears. Lots and lots of tears.
I’m now on heart medication. A 24/7 IV drip that comes around with me in a bum bag/fanny pack. Veletri is the name.
I’ve been working away for months on getting so many tests done to qualify to be on a transplant list for double lungs. I never knew how many tests are involved.
Amongst the tests, Ive had so many days in bed unable to breathe or move fully, many hospital admissions and so many emotions and stages to work through.
I’m officially on the transplant waiting list.
So, any minute, a call could come through telling me that lungs with the same blood type and dimensions are waiting for me.
That someone died, but before they died – they left them for someone like me.
I always wonder – where will I be when that call comes?
In bed asleep? At a doctors appointment? Eating dinner?
I could write about the heart failure and how I haven’t been able to breathe properly since April. I could write about the way it feels to sit in a body that wont work and think “Oh My God! If this gets worse, Im screwed!”
I could write about how I didn’t see it coming even though I have been struggling since October 2019.
I could go more into detail about the medications and the Pulmonary Hypertension medication Im taking through a drip. The fluid tablets or the reflux medication.
I could write about the days where I cant keep my eyes open and lay in bed thinking, but unable to move.
I could write about the emotions and the hard work I have had to do to go from DEVASTATED about needing a transplant – to accepting and embracing the life that I could have with new lungs.
I could tell you all about the surgery I will under-go and how I will be on life support for approx 3 days. The details the surgeon told me in depth so I could sign a consent form.
I could tell you all about the fact that I may not survive.
I could write about the life changes that have taken place and the loss of independece Ive had over the last 6 months. How showering is now an exhausting and long process – I sit on my bed in a towel for half an hour waiting to breathe better before I attempt to get dressed.
I could even write about the hospital admissions, the people Ive met, the people that didn’t make it, the nurses who have touched my life and the Doctors that have delivered news that rattled me.
I could write about COVID and how being this ill during this time has been a challenge.
I could tell you about the fear that creeps up when Im alone at night with my own thoughts and how I pray and speak to Angels and whisper pleas for help in the dark.
I could tell you about the transplant success stories I read and how much respect I have for Donors.
I could go through the NETFLIX shows I’ve hidden with and escaped life with.
I could run through the books I wanted to read and havent.
I could tell you about the bucket list that changes each day
I could tell you about the people that support me emotionally and the ones that ran
I could tell you about the lump that forms in my throat when I think about my son and how many events I will miss of his, if I don’t make it.
I could even go into the funeral arrangements I have contemplated making.
Instead, Im going to tell you this….
Lifes short. Tomorrow is not guaranteed. Happiness is not a destination.
When we sit, unable to move or breathe – Memories are the only thing we hold onto and future plans are what help us push through the hard days.
Until next time. Be kind to yourself and others.