Case Studies
Michael Blackett
It’s perhaps not the most medically sound way of testing his condition, but it works for Michael Blackett. As an experienced musician, he can tell when his body is not at its best by how well he can play his beloved euphonium.
The 22-year-old has been playing the instrument, a four-valve brass instrument from the tuba family since he was eight years old, after picking it up by chance during a music session at junior school.
Now he is the principal euphonium player in the Chapeltown Silver Prize band, with whom he plays as often as his condition will allow. Sadly over the past 12 months Michael has been battling various infections which have seen him spend a lot of time in hospital.
He said the first clue that something is about to go wrong with his health always comes when he picks up his instrument to play.
“To be honest playing the euphonium is how I gauge how well or unwell I am,” he said. The more I can play and the more I can do without having to take a breath, I know how well I am. When it starts getting harder, I know I'm getting an infection.”
Throughout childhood and his teenage years Michael controlled his condition through the various routine medications that CF patients are on, and preventative doses of intravenous (IV) antibiotics given in hospital intermittently.
He even worked in a very labour-intensive job as a beer delivery man around the city and beyond up until two years ago.
Last year Michael said a severe fungal infection that left his immune system shattered and his body vulnerable.
“I've not been very good this past year," he said. “I've been in hospital at least four times and I've just come out again after a four week stay. I lost a hell of a lot of weight. I went down to seven and a half stone and I had no energy. My lung capacity was 21 per cent when it's usually 60 per cent and I just couldn't breathe.”
His stay at the Northern General has certainly helped him re-gain his strength. He's now back up to 10 and a half stones and is feeling much better. The care and professionalism of the dedicated CF nurses and consultants have never been questioned.
But there are only two dedicated rooms for CF patients, meaning most are forced to stay on a general respiratory ward where most of the others are elderly. Michael said the surroundings were quite dreary - an environment which doesn't help lift spirits during the long stays in hospital. He said: “It's not nice going into hospital, but you could put up with it if you knew it was only going to be a day or two.
“As it is with us we're normally there for weeks rather than days and it does get quite depressing. It's a dreary place and it gets boring very quickly. We take our own stuff in including our bedding and TV and DVD player to try and make it as normal as possible. Although the staff are great, the facilities are not adequate for what we need.”
“I have to balance the taking of my medication, physiotherapy and treatment which can take several hours in a day, with the activities of normal life, like work, maintaining our home, cooking, cleaning and juggling relationships.”
That's why news of the appeal has been greeted with so much enthusiasm and excitement by Michael and other CF patients.
“We've seen the plans for the unit and the rooms and it just looks fantastic.” Michael, who now works as a civil engineer for Sheffield Council, said. “It looks like you will be staying in your own flat or something. There'll be TV and a kitchen and internet access which will mean I can carry on with some of my work. It gives us back some independence and control over our condition and treatment. It doesn't feel like they're taking everything away from you when you get admitted to hospital. I think that's a big thing for young people, and it's a big thing for your family too I think.
“Once this unit is built my fiancée Lyndsay and my mum and dad will not have to worry as much, and won't feel the pressure to have to come and see me every day because they'll know I'll be happier and busier and not just laid there staring at the walls."
Michael is calling on everybody to support the appeal and get behind it with all their weird and wonderful fundraising ideas.
He is currently trying to set up some charity concerts with the band to do his bit towards making it all happen.