herald

Tuesday 17 October 2017

Rushed to A&E, bleeding, then put in a six-bed ward with screaming, urinating patients -- my cystic fibrosis hell in St Vincent's

IT'S Thursday, September 30, and I'm lying in bed when my chest starts to gurgle. I'm scared as I know what's about to happen. I lie in bed, try not to panic and hope the gurgling goes away, but my mouth starts filling with blood. I swallow and straight away the blood is back in my mouth.

I get up, go to the bathroom where the hemoptysis -- a serious bleeding from the lungs -- really starts.

I open my mouth. It's like turning on a tap of gushing blood. Tears roll down my cheeks. I am petrified thinking, how long is this going to last? How much blood am I going to lose and am I going to be okay?

After roughly 20 minutes, the bleeding stops. I then get the chance to tell my mam I've had a hemoptysis. She panics straight away as she knows what can happen.

I tell her it's fine, but I start coughing again with the gurgling sensation and head straight for the bathroom where I cough up a little more blood. Once the bleeding stops I just want to go to bed, lie down and stay still. My mam checks on me every single hour through the night, just in case.



Packed

Friday, October 1, and my mam drives me to St Vincent's Hospital. I have packed a bag as I fear they may admit me because of the hemoptysis.

I arrive there at 10.30am, and tell the CF nurse about my hemoptysis. She tells me, "You're going nowhere today. You will be admitted with that amount of blood loss."

The CF nurses know what I am thinking. They know I don't want to go to a six-bed ward. They know I am always this way. When they realise that perhaps I am going to go home anyway, I am told, "If it happens again at home it may not stop and it could be fatal."

It finally hits me. If I do go home and if I have another episode I may not get to hospital in time.

It takes me hours to actually calm myself down and decide whether yet again I should risk my life by setting foot inside a crowded, common ward. I reluctantly agree to stay -- reluctantly because I know the conditions which I am being thrust into are going to make me even sicker.

It's Tuesday night and I'm finding it very hard to cope. I now have the patient with pneumonia, the patient that is whimpering, moaning, screaming all the time, a new patient using a commode throughout the night and there's also a new very confused woman who keeps shouting for a taxi.

I cannot bear another minute. I flee the ward.

At night I sit at an empty coffee shop, just to get away from the constant whimpering and moaning. There's only so much that anyone can take.

I am strongly considering signing myself out. I have been here four nights and I've had very little sleep. I have no appetite and I fear I am getting sicker by the hour.

By Wednesday, I am struggling to endure these conditions. All around the ward people are coughing, people are sneezing, people are screaming and rambling,

I can't take it any more. I decide to sign myself out -- against all medical advice -- due to the grim conditions in St Vincent's Hospital, Ireland's so-called Centre of Excellence for Cystic Fibrosis.

When I have an exacerbation of my cystic fibrosis, I shouldn't have to worry about the conditions I am forced into.

I am trying to write without any anger towards the people responsible: Minister For Health Mary Harney, the HSE and the Government, but it is virtually impossible.



SHARING

No words could even begin to make you understand the stench that comes from a ward when I am sharing with a patient who uses a commode or a patient who needs to be manually evacuated every morning.

No words can describe how it feels when I am lying in bed exhausted from lack of sleep and a patient enters my cubicle at 6am and urinates at my bedside, all over my possessions, then falls inside my cubicle leaving blood all over the floor.

No words can describe the utter despair when I am placed in a six-bed ward surrounded by patients who are confused and screaming constantly.

No words can describe the panic when I am surrounded by patients and visitors on an open ward coughing and sneezing, knowing that there's a huge chance I could catch something life-threatening for me.

No words can describe how I feel when I see that everyone responsible for these conditions is standing back, doing nothing.

The Pollock and HSE reports have been printed. Why have they not been implemented?

The Government has given millions of euro for bailouts, but not a fraction of that to save the lives of young Irish citizens with cystic fibrosis who are dying unnecessarily.

This is something no parent, brother, sister, grandparent, aunt or uncle should have to endure after they have cared for a CF patient all of their lives, witnessing the brutal conditions those patients have had to put up with.

No mother or father should have to watch their child slip toward death from an already unforgiving illness in such inhumane conditions.

How many more CF patients have to die before we get the facilities we need to survive?

hnews@herald.ie

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