Voices from the UK's pulmonary hypertension community
My CTEPH journey
I couldn’t breathe, I walked so slow
So to the doctor I had to go.
You are quite ill, I’ll ring ahead
Go to the hospital, they’ll give you a bed.
That very first night was oh so long
My husband had to leave, it was hard to stay strong.
We’ll take some bloods, scans and a test
You stay in bed, and get lots of rest.
Can I get up, perhaps wash my hair?
Not yet they said, you must stay there.
Groin to heart, the tubes go here
That scared me most and gave me fear.
Okay, so CTEPH is what you have got,
You’ll have some questions, most likely a lot.
Warfarin, leaflets and books, this is what you need
So now go home and have a read.
I put the books into a drawer,
Put my head in the sand and tried to ignore.
In a few months’ time, the books came out,
I read, I cried, and had a shout.
Six-minute walk, blood test and a chat,
Every few months, I’m okay with that.
Let’s do groin to heart again they thought
Didn’t want to do it, but knew that I ought.
You’re doing okay, so now you can go,
You may live long, we really don’t know.
Life changed in oh so many ways,
Couldn’t do stuff like in the old days.
Little by little I found my way,
‘Cos I knew I must fight, so I could stay.
And then came COVID, so had to stay home,
Get the shopping sent in, and no longer roam.
Anxiety and depression, made me feel bad ,
I cried all the time and felt really sad.
My lovely husband helped me so much,
But I still feel a burden, and he is my crutch.
I baked some bread, and made some art,
That made me feel better, and it was a start
I missed kids and grandkids oh so much,
But now we can hug and meet and such.
I still feel scared and sometimes sad,
But I’m still here, and that makes me glad.
Myra Morrison crafted this poem to tell her story of being diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) and living through the pandemic.
She wrote it in 2021, during the second year of the COVID-19 pandemic.