On Monday, I finally got an urgent appointment to see the Transplant Doctor. I refused to get off the phone until something was organised for me before the unit closes for Christmas.
Dr Ice as I mentioned on my post “Im not Waiting” was making it impossible for me to come in despite my plea and my situation.
When I got in, I was seen in the corridor by one of the nurses that was caring for me throughout the year and she was surprised to see my colour. She commented that I looked grey.
For EIGHT weeks I have begged and explained my situation to the team. I’ve spoken to Dr Ice and explained that I’m feeling as though my body is deteriorating.
When I sat in the office, I was made to go over the situation again
Dr Ice then said
“You should have come in sooner, the door is always open for you & you are in a bad state”
You reckon! Was this guy effing kidding me?!
I didn’t know whether I should have gone off at him and reminded him of all the calls I’ve made
Instead, I remained calm and said – ‘I tried, you and the team have been busy’
I saw the wheels turning, he was registering the rejection he gave me for weeks and he then got into quick mode
A side note – Its important to remember as a patient, this is their job. Things get lost in the cracks and unless you advocate for YOURSELF and be in the loop with things – you could be making damage to yourself
So Dr Ice arranged an urgent CT scan of my chest and abdomen
Bloods were taken
After he saw the CT, he confirmed that lungs are in an extremely bad state and almost non existent. My lungs are like a decoration, just hanging there.
Which means, my heart is working its ass off
Which means, if I dont get this call soon…. the reality is, heart attack territory.
He reassured me he would call Tuesday with the blood results – he didn’t. I called a few times and left messages for him on Tuesday – no reply
Wednesday again – still no reply
Called my GP and he was able to access the results and inform me that I was extreemly deficent in Vitamin D, border line with Iron
Once again, another side note- follow things up and be your OWN nurse.
The hospital has given my file in the system 3 stars. 3 stars means URGENT.
I was told by the team that my lungs could be days away because the ones I have are packing up on me.
I have been dealing with heart failure and slowly declining since April this year.
8 months later…. I sit typing with dark circles and puffy eyes through exhaustion.
My chest is sore and so is my back from laborious breathing
My stomach is round and swollen from fluid.
My teeth are sore and so is my throat. Probably a side effect from one of the medications.
My brain is ticking away because I am meant to stay as well as I can until I get the call
I need to
eat low sodium foods
eat low potassium foods (one of my medications requires this)
low fodmap foods (my bowel is badly inflamed)
Foods low in Vitamin K and Vitamin A (for the Warfarin im on for my blood clot)
but somehow eat foods to boost the liver
reduce the risk of oxidative stress that comes with right heart failure
Increase my Vitamin D asap
Sleep – but I keep waking up
Walk – but Im so damn puffed out
Upper and lower body exercises (do I laugh now or later?)
Stay ontop of all my medications
Stay positive for when I get the call
Its passed midnight and my mind struggles to switch off
I’m alot of emotions all wrapped up in one
2020 has been an incredibly challenging year and I know I have so much more to go through. Pray for me.
Until next time