One Day!

I lasted. I couldn't have predicted the national coverage that began last week focusing on the NO FACILITIES for people with Cystic Fibrosis in this country, which is why I'm blogging today.

Pasted below is the great article which Orla Tinsley wrote in the Irish Times. Orla has CF like myself, and Bobra, Orla, "K" and myself (ALL with CF) actucally shared a bedroom for about two weeks when we had chest infections in 2006. What was it they say about Cross-Infection? Well maybe when we are at our sickest and most vulnerable that issue just magically goes away...

This article sparked what has gone on in the past week. You can listen to the Joe Duffy show by clicking here. Click on "lastest show" (from today) or select the podcasts for the other shows. Some of it is truely heart-wrenching though so be warned. The 'Joe Duffy Show' has been running for years and NEVER has a topic run for two days in a row. Here we are on Thursday and this has been on for a week. Do have a listen though.

Give cystic fibrosis sufferers a chance at life

Orla Tinsley

Just before Christmas my friend asked me if I could have anything in the universe for Christmas, what would it be? I said Johnny Depp and a chocolate fountain, because I didn't want to say what I really wanted, it was too depressing, writes Orla Tinsley .

What I would have given up my next few Christmas presents for was a cystic fibrosis unit. It sounds like such drivel, but I have never wanted anything more.

On St Stephen's Day, 2007, a girl I didn't know called Tammy died. On December 29th, 2007, a girl I did know called Barbara died from the same condition, cystic fibrosis, a disease affectionately referred to as "the swine" by Barbara. Tammy was 18 and Barbara 24.

Cystic fibrosis is a genetic disease that causes respiratory and digestive problems, osteoporosis, diabetes and other complications.

It's a multi-organ disease and in Ireland there is a 1 in 200 chance that two people who have the gene will have a child with cystic fibrosis. We have the highest incidence in the world and I was one of those figures. I am 20 now and one of over 1,100 people in Ireland living with it.

At the end of November another girl I knew called Tracie died aged 24 from the disease. Her death got one column "Tracie feared if care would kill her" in a newspaper.

That was the weekend after the death of socialite Katy French. In any situation it is devastating to lose someone so young but I found myself not talking about Katy like everyone else, because secretly I felt guilty at the anger raging inside me. Of course it is tragic that she died at 24, but to watch it reported and debated so exhaustively wore me down, so much that I felt like arguing about the girl who has been called "intelligent and caring". I never knew her but I was envious of her, or rather the coverage she got after her death.

It made me feel for Tracie, who played music with Phil Coulter in New York, and her family, when she died from an illness she couldn't control. I also thought about my dear friend, sports enthusiast and all round charmer Damien who passed away last year and for my magazine editor, scientist and encyclopedia of knowledge-friend Jean, who passed away last March. I only got to two funerals, and that's just 2007 and just the people I knew of.

Progress has been made on the issue, meetings are being held, talks are ongoing, but we don't need to hear about meetings and conversations. We need a public commitment, a promise that we will have our dedicated unit, and we need it now. As the public mourned Katy French and the lens on cocaine in Ireland started to get focused, I thought wildly that maybe if I got engaged and broke up with a slightly well-known person, did some lingerie modelling and then died, if I fought off my illness long enough, maybe something would be done. Maybe the Taoiseach's aide-de-camp would come to a cystic fibrosis funeral and see something he would remember, something that he might report back. He might see friends and family congregate, he might hear Leonard Cohen's Alleluia or Tina Turner's Proud Mary, funeral songs chosen sometimes years before the funeral took place.

He might see some lucky transplant recipients hovering outside the church waving and mouthing words from a distance to their still suffering friends, that they can't mix with anymore for medical reasons.

And we don't like that word suffering in the cystic fibrosis world, but we are suffering. Watching three of my friends die last year and going on to their tribute pages on Bebo hurts, out of sadness for the event and a personal fear of the unpredictability of life. Each of these people had just as much life as Katy French, and they were making their way through science, through selecting hurling teams, through study. Privately and steadily they mapped their future in a country that seemed to deem them insignificant. It makes me feel like I need to give up college and get out there and smile for every photo, tirelessly self-promote because physically I cannot do both college and public relations, but maybe if I did then people would notice the tragic ignorance of our Celtic Tiger. A television programme did a segment that linked Katy French to other celebrities who died young like Marilyn Monroe and James Dean.

It made my younger cousin tell me all about the model she never knew until she died and how her classmates are now infatuated.

Maybe it is better for her to be infatuated with the glamorised death of a model than with the gritty realism that people like her cousin are dying, because that is what we are teaching our young people today - get famous and you will be remembered, if you are famous your death will matter.

People with cystic fibrosis take drugs too, see tireless parties of doctors and nurses and medical students. We drink cocktails, inhale and pop pills everyday, but in a different way from other drug users. It is all relative and people need different things at different times in their life, some people say they take cocaine to feel the buzz, to feel alive.

I feel very much alive and now I would like the buzz of knowing that the next infection I get might not kill me; that I could have my own room in hospital instead of risking infection from everyone from psychiatric patients to those with broken limbs and common colds.

I would like the buzz that can only come from decreasing our mortality rate from cystic fibrosis which is drastically ahead of Northern Ireland, Britain and the US, in this, the country with the highest instance of the disease in the world.

With cystic fibrosis I cannot choose when to take drugs, shoot up some insulin and I cannot change my fate. But my life and that of my friends can be prolonged. I can also prolong the time I spend out of hospital by ensuring my time in there is well spent.

It is simple: We need a dedicated cystic fibrosis unit with fully-trained staff who are knowledgeable about the disease, not a bed where a nurse tells you that your cough is strange; that you're too young to be on so many drugs and with whom you have to argue for an hour before you get the particular drug you need.

We need our own isolation rooms with en suites so that we can get over whatever infection we have caught, whether that takes us two weeks, three weeks or two months.

We need to know that we do not have to worry about the person with MRSA in the other room infecting us by using our toilet, that we do not have to worry about being heckled for opening the window or being moaned at for vomiting after an operation. We deserve freedom from infection and from the poor, confused woman who you constantly have to guide back to her bed because there is nobody else there to do it.

We need somewhere you do not have to endure someone else's blood on a tray containing intravenous drugs.

Cystic fibrosis will eventually defeat me but there is no way it is happening yet.

A degree, some travelling, maybe falling in love would be nice first. Or maybe I will become a lingerie model. The possibilities are endless if only the means were there.
© 2008 The Irish Times
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