Ireland is making progress on cystic fibrosis treatment but facilities are so much better in the US, writes Orla Tinsley
EARLIER THIS week, eight single en suite rooms for cystic fibrosis (CF) patients opened in St Vincent's University Hospital, Dublin. I heard about it from a friend who is in there at the moment. When I called she spoke to me about life on the, newly improved, inside.
As a fellow woman with CF we keep tabs on each other's progress. Her news was great. Each room has a light, stethoscope and oxygen - all things which would not have always been available at the bedside of a cystic fibrosis patient before, despite oxygen being vital to the treatment of many patients.
"It's very sterile and clean," she told me on the phone. "There are also hand washing facilities in the bedroom itself so the hygiene is much better."
There are currently 18 CF patients in St Vincent's hospital, the average number of patients there at any given time.
In the past my friend wasn't allowed on the designated CF ward because of the risk of cross infection. "Now to finally be on a ward that caters specifically for CF is fantastic," she said.
There are the new en suite rooms, and two single rooms that are not en suite. So while it is indeed wonderful that 10 CF patients are now in designated rooms, there are still eight less fortunate patients who are not.
It makes sense to keep up with developments and not just at home. On a recent holiday to New York, I decided to check out what the city had to offer in terms of CF facilities.
I got in contact with Jerry Cahill, a 52-year-old volunteer with the Boomer Esiason Foundation.
The foundation was set up by the former National Football League quarterback, Boomer, when he learned that his son had CF.
Since 1993 it has been improving the quality of lives of people with the disease in the US. Jerry is a keen jogger who also happens to have CF. He believes that exercise is important, that it makes the difference between "good health and bad health" for those with the disease.
Jerry and I had to talk over the phone because cross infection guidelines prevented us from meeting face-to-face.
His positive attitude was infectious. Even his website gives off good vibes. Just browsing through the first few testimonies made my insides tremble.
Beth Sufian is a 42-year-old with CF, happily married, living in Texas and working as an attorney.
Jenny Davison is a 39-year-old woman with cystic fibrosis who worked as a nurse before giving birth to her now 10-year-old daughter.
The ages and lives of these women astounded me.
It was like I was observing an entirely different species of people. Longevity is tantalisingly possible with CF - though you wouldn't know it from the depressing statistics here in Ireland - and these people are proof.
I asked Jerry about the facilities in his area. "They're not always up to par, sometimes you have to share with someone when you go for treatment, but then I rarely go in," he said. When I told him about how CF patients in Ireland have to share with five other people he was shocked.
Jerry receives home therapy when he needs antibiotics and a specialist nurse visits him once a week. "Don't you have homecare in Ireland?" he asked.
We do, but no nurse visits us and our medical team say it's not suitable for everyone. Jerry's routine is that he stays in hospital, in a single room, a day or two and after that the insurance companies take over. "Insurance does not want to pay for hospital visits, but it will pay for home iv's, nebulisers and a percentage towards the vest."
Ah, The Vest. Last January when the spotlight shone on the plight of cystic fibrosis patients in Ireland, a device called The Vest was mentioned. Looking something like a back protector that you use for horse-riding, the physiotherapy tool acts as a way of shifting the mucus from the lungs through a series of vibrations.
I told Jerry that a member of my care team told me that it hadn't been approved in Ireland because they didn't know enough about it and there were negative side effects. "Absolute rubbish," Jerry said. "It's been in use here for an excess of 15 years."
By now we were like kids, talking about sweets that one is allowed and the other one isn't. "What about nebulisers?"
I drooled. Jerry has a pari eflow, a nebuliser that nebulises 1 ml per minute, significantly reducing the amount of time that treatment takes in the day. It is almost palm size and easier to carry than other nebulisers. While a pari would fit in a handbag, larger nebulisers have to be carried in hand luggage while travelling.
On the way home from New York, this meant carrying a heavy backpack through the airport. It also meant getting detained and searched by US security. "What is this device M'am? A what?" Despite the fact that I had a doctor's note, they had to take my nebuliser to be swabbed.
Roughly seven years ago, it was made mandatory that all US states have a proper paediatric centre and a proper adult centre for cystic fibrosis. Patients choose their own centres and if a patient is not happy there, he can switch. I told Jerry that I chose which center to go to when I was 18 and that there were only two choices.
"For the whole of Ireland?" he asked, disbelieving.
In the US, Jerry occasionally has to go to A&E, and although the wait is different in every hospital, he never waits for more than four hours. A time frame that seems unreal when you look at the Irish situation where some CF patients have had to wait up to five days before being admitted to a ward.
"Sounds like Ireland has a long way to go," he sighed as we said our goodbyes. And he was right. We are moving in the right direction though. My friend in St Vincent's tells me what a difference those first dedicated rooms are making.
"It is easier and feels more humane being here," she says. "It's a dream come true."