Since 2014, when she became of age and transitioned to adult SCD treatment, Kimberly Charles has been finding it very rough indeed. The days of loving, smiling, playful empathetic paediatric nurse specialists and haematologists were replaced by the stark realities of adult medical indifference.
‘My most memorable sickle cell crisis and hospital admission was in 2014 and every admission thereafter,’ Kimberly says. ‘I had been admitted for pain and this was going to be my first time being treated as an adult sickle cell patient. This moment would serve as an eye-opening experience for me because it would introduce me to the dark side of the medical industry.
‘Being admitted to the hospital as an adult sickle cell patient would mean I could no longer have the luxury of caring and attentive nurses, immediate and accurate medical treatment, nor access to a competent medical professional.’
As an adult, Kim quickly found that being admitted to a hospital would come in the form of begging, pleading, and crying out in agony, only to be ignored.
On one occasion, unbelievably, the director of the hospital threatened to call the police if the young adolescent in acute sickle cell pain crises did not ‘behave’! (By behave the director meant keeping quiet).
Statements
Kimberly clearly remembers being told – ‘Sickle cell pain only last three days…’ and someone commenting, – ‘She’s faking her pain’!
Kim clearly remembers being told –
‘Sickle cell pain only last three days…’ and someone commenting, – ‘She’s faking her pain’!
At the adult clinic, medical personnel who treated Kim would seem to have no clue as to how to correctly follow years of documented medical protocol. She was subjected to doctors’ personal selection of medications they believe all sickle cell patients wanted.
Frustration
At a point, thoroughly frustrated and fed up of the prejudice and stigma she received, Kim became fearful of checking in at any hospital for treatment.
‘Oftentimes, I fought with myself and thought ‘I would much rather pass away from the suffering in the comfort of my home, than to pass away due to medical negligence.’
The innocence of childhood and the confidence built up in those years towards the healthcare industry were eroded by a few short years of upgrading to adult treatment.
‘I have lost all hope and faith in the medical industry and in the people who corrupted it’.
SICKLE CELL
Poem By K.C. aka Kimbo Sqeez
If I told you how I feel
You wouldn’t understand
You’d simply nod your head and say
“Yeah I understand”
But you don’t know the type of pain
That runs inside of me
It’s that sickle cell crisis
Check your anatomy
We start out fine the first minute
But crippled in the next
Rushing to the hospital
To see what meds to get inject
Needle after needle
But they can’t find a vein
So they keep digging in
Just worsening the pain
Nurse after nurse
I feel like a test dummy
Cause after they try and fail
There’s nothing left of me
Now I’m on the IV
All this medication
Knocking me out
Causing hallucinations
From the Morphine
The Benadryl
And Demerol
The Toradol,
The Pepcid
Yeah I know it all
Might happen once a year
Maybe 5 or 6
But that’s a healthy SC kid
Imagine one that’s sick
We fear blood tests
So we punch and kick
Doctors don’t understand
They say “We can’t control that kid”!
But why’d you have to do it
So early in the morning
Cause I know when you came in
You could’ve heard me snoring
I stare at this pump
Which I see everyday
Shooting liquids into me to fade the pain away
Thought I was supposed to feel better
That’s not the case
The results are in
My hemoglobin’s out of place
Now its transfusion time
The doctor’s in a hurry
He’s a hero if this goes well
So like rats they scurry Gathering up stuff
But they don’t know the half
It’s what a parent fears
But they’re just doing their task
Phone calls are made
To other doctors
Friends of the family
Anything to stop the
Thought of your child
Receiving blood
Cause now you’re paranoid
Did they clean it good?
Hours pass
The doctor changed his mind
“We’ll wait another day” he says
Then goes on with his life
Blessings drop from the sky
Now I feel better
Everything looks good
Including the weather
Held back another day
Just to make sure I’m Ok
But once I’m discharged
It’s like “hip hip hooray!”
Then I think to myself
This journey isn’t over
I’ll be perfectly fine
And just like that it starts over…