Cystic fibrosis sufferer Orla Tinsleyis back in hospital. This is what it is like.
On Tuesday night I spoke from my home on RTÉ's Prime Timeabout how inadequate the facilities for cystic fibrosis patients are in Ireland. After the camera crew left our house my father drove me to St Vincent's hospital in Dublin where I had finally gotten a bed after waiting for six days.
I spent last night in a six-bedded room where a woman to the left of me coughed and cried and the woman across from me wailed like a baby through the night.
I thought of how the next few familiar first days of hospital in a situation like this would pan out. I thought of the woman from the Health Service Executive who told Miriam O'Callaghan that a dedicated CF unit would be available by 2010. I know that by 2010 there is a possibility I might not be here, and neither might some of my friends.
I slept until 2am and woke up to the lady crying again and it disturbed me to hear her distress, that she could not stop.
I walked along the corridor for a while and I felt sorry for her. I focused on a Monet print on the wall of the corridor and thought of the line from the movie Cluelesswhere a girl describes another girl as a Monet.
"From far away, it's OK, but up close, it's a big old mess."
A bit like our health service.
Walking back to bed, I thought about my much sicker friend on another ward. Last week, a woman in her room who up to then had seemed sound of mind threw knives and forks at her, leaving her very upset. At least I had the strength and freedom to escape from my situation, unlike my friend who was stuck to an oxygen cylinder.
In the past week, cystic fibrosis has been talked about in the media and the people of Ireland, whether they have been affected personally by CF or not, are now calling for action. They are just as baffled as I am that in a country with the highest instance of cystic fibrosis in the world, we have the lowest life expectancy.
The Pollack Report of 2005 outlined clearly that cystic fibrosis patients should be kept in single, en suite rooms and called for this immediately. With over 1,100 people with cystic fibrosis, it is difficult to accept that this has not been a main priority of the health authorities over the past three years.
I am 20 and my life expectancy in Ireland is 10 years lower than in places such as Northern Ireland, the rest of the UK, Denmark, Canada and the US. Going into hospital in Ireland means fear, psychological damage, and potential death.
I know I am going to die young, because that is part of my illness and I am not afraid of that.
I am afraid of dying prematurely.
What is even more harrowing is that the HSE has the potential to fix this problem now and not later. The idea that a cystic fibrosis unit will not be up and running until 2010 is terrifying. It is terrifying also that the people in charge are not taking immediate action.
This morning I read that Mary Harney wanted a cystic fibrosis unit but in order for it to proceed the national referral centre for CF, St Vincent's hospital, felt "the 120-bed unit should not be built as a single and stand-alone facility". I understand this from a hospital point of view, but I cannot help thinking it's selfish. While they try to push for maximum resources, people with cystic fibrosis are dying.
In four or five days, because of the noise in my room, because of sleep deprivation, I will be a shadow of the girl that appeared on Prime Timeand I will be exhausted from listening, drug-taking and fighting. In four or five days I will have slept in a room with the recycled air of five other sick, infectious people.
This week people with cystic fibrosis used all of their courage to stand up for the treatment they deserve. They went on the radio along with incredible parents of younger children with cystic fibrosis who fear all of this ahead of them, with parents who have seen their young adults die in six-bedded rooms like the one I am now in.
The general public pitched in so generously too and one lady offered to move out of her house so that people with cystic fibrosis could live there. Another man came on Joe Duffy's Liveline, as a fellow patient with CF and I were on, and offered to finance and build our dedicated cystic fibrosis unit and to have workers on site for Monday morning, if only someone would give him a site. He also offered to pay for my friend Jennifer and I to go into a private room at that time. The problem is, I have VHI as do some other CF patients, but we cannot avail of it because a private hospital without dedicated, knowledgeable staff is in itself dangerous.
It is embarrassing for people with CF to be made feel like weak, fragile charity cases, but as the HSE continues to ignore us that is what we become: the forgotten people in a prosperous land that are left to turn to the kindness of strangers for help, because our own Government cannot, or will not, provide.
A HSE representative on Prime Timementioned that many people with CF could be treated at home. This conveys the level of ignorance we are trying to deal with here because as we fight chest infections, lung damage, digestive problems, diabetes, osteoporosis and the psychological damage of watching friends die, we watch elderly women fight dementia and sometimes die in our rooms. Everyone with cystic fibrosis is unique and their pattern of illness is like their fingerprints, unique to them. As I lie exhausted in bed and listen to the coughs around me, I think of all the people with cystic fibrosis in hospitals right now who fear for our lives. I think of how detached from the situation those in power must really be and I struggle to understand the utter stupidity of their inaction.