Fighting for a normal life
NOEL KENNEDY SPEAKS TO PAUL DEERING ABOUT A RARE ILLNESS WHICH STRUCK HIM EIGHT YEARS AGO. THE DAD OF TWO STILL SUFFERS SERIOUS SIDE EFFECTS TODAY.
NO EL was just getting out of the bath. For once he was feeling strong enough to have one without any assistance f rom his wife Valerie who was downstairs getting their two children, Adam and Luke ready f or school. Next, he rubbed slightly too hard on an ulcer on his leg. By now he was getting used to having ulcers on his legs and arms. But this time he burst a blood vessel and blood shot out and it just wouldn’t stop.
Valerie heard the cry for help but didn’t realise it was so serious. Getting the children, one of whom has special needs, out the door was the priority but soon panic set in when she saw the situation in the bathroom.
Blood all over the wall and her husband trying to stop the bleeding. One 999 call later and she had some helpful advice on how to try to stop the bleeding. She put a tournique using one of her husband’s ties on his leg and wrapped it in towels and waited for the ambulance to come to their Skreen home.
“He was going pale in front me. It was scary,” recalls Valerie.
“I could have bled out that day if nobody was there,” says Noel. It was just another episode in the long and seemingly never ending journey of Noel’s recent medical history
That particular incident was two years ago but it wasn’t the first time an ambulance was called to the Kennedy home in Skreen.
“They know the way by now and they’ve always been great. They’re out to me from Sligo in 20 minutes,” says Noel, who will be 58 this week.
Ambulances and hospitals have unfortunately become a fact of life for Noel ever since falling ill with a rare condition some eight years ago.
The family life of the Kennedys has never been the same since and even now Noel doesn’t know what’s around the next corner. All he knows is that he has made progress on a road to recovery but there are constant setbacks.
He needs a blood transfusion every week, is on powerful drugs and it means he’s prone to infections.
The Kennedy’s 13-year-old son Adam has special needs. He’s none verbal and attends a special school in Ballina each day. He wakes most nights in the early hours and is up then for the rest of the day.
The burden on Valerie has been immense but she remains as upbeat as she can. She’s literally flat out looking after her children and then faced the uncertainty of the family’s main breadwinner falling ill.
Noel was a well known photographer around the county for over ten years. Recession meant his business folded in 2009 but he got work again. However, fortune didn’t smile on him once more when about a year later he suddenly became quite sick.
It has left him confined to the ground floor of his home and there are days when he literally cannot get out of bed. In all, he has spent 30 weeks in the past two years in hospital.
“Today’s a good day,” he says as he sits in the Glasshouse Hotel with his wife having come back from his latest hospital appointment which revealed that one remaining ulcer on his left leg was shrinking thanks in the main to a new type of pressure dressing that helps speed up healing.
It comes with a small pump that takes away discharge into the dressing and prevents the build-up of bacteria.
Noel is clearly grateful to be up and about sipping coffee. Sometimes his day doesn’t start at all as Valerie reveals.
“Some days you can get frustrated like when you see him sitting in the chair all day sound asleep. He spends most of his days asleep. Then, he might get a few days when he is good but usually four out of the seven days he is asleep right through,” says Valerie.
He was working as a sales rep some eight years ago when he began to have flu like symptoms.
“Lumps began appearing on my arms and legs hands and feet, appearing and disappearing,” he says. Something was obviously not quite right.
“They were extremely painful and if they came up on my hands, for example I would have to stop driving because I wouldn’t be able to grip either the gear stick or steering wheel or if it came out on my feet I wouldn’t be able to use the pedals. I wouldn’t be able to even do something as simple as lift a cup of coffee.”
And so began a journey of trying to find out what he actually was suffering from. The condition was frustrating enough but this was added to by the fact it took two years to diagnose what was wrong.
He was going from doctor to doctor and as Valerie explains by that stage he had lumps from his knees to his ankles in both legs.
Noel was finally told he had an autoimmune virus called Panniculitis.
About four years ago the condition settled in both of his calves and went away for a couple of weeks. It came back but this time it brought with it another condition, a disease called Pia Derma Gangrenosum or skin breakdown which at its worst saw him with 15 ulcers on his calves.
His immune system isn’t the strongest as a result making him vulnerable to other conditions.
On December 28th 2015 he and Valerie and were at his niece’s wedding, and at dinner he saw he had three angry looking red spots on my right hand.
“By the time the band was halfway through their set there were a few more spots and I was barely able to stay upright and had to retire to bed in one of the rooms.
“The next day I was taken to hospital where
I stayed all over the New Year and a few days beyond. I was diagnosed this time with a rare infection called Sweets Syndrome.
“It was very painful. I spent three days in hospital. A strong dose of steroids brought that condition back to tolerable levels.
“I still have it in my system and it rears its ugly head every now and again.”
Heart failure too became a condition to which he has to get used to and again, medication for this is strong. Most of all he now has to have blood transfusions.
“While they were trying to cure my Pia Derma Gangrenosum, I was put on a lot of high tech drugs and one of these was responsible for damaging my bone marrow. So now I’m receiving blood transfusions once a week because my bone marrow isn’t able to produce enough red blood cells,” he says.
This will be a lifetime scenario. His consultant is trying to see if he will be able to space them out to every two weeks.
And, as if he hadn’t enough to worry about, Noel’s bone density is reducing as a result of the amount of steroids he’s taking.
Many complications from an autoimmune disease which Noel or his doctors have no idea how he contracted.
“They’re never going to know where it came from. Even today we were told that it’s likely they’ ll never get to the root of how it started.
“He’s prone to infection and if he gets one it means he’s on strong antibiotics again and the blood goes way down again so it’s a vicious circle of events,” says Valerie.
Noel says he can forget sometimes what all his hospital admissions were for and he’d be forgiven for doing so.
He’s also had a bout of cellulitis in his right arm which had almost turned septic. He had four operations necessitating a month in hospital.
And, when Noel was battling these various illnesses, son Adam was discovered to have compression of the spine and he was diagnosed with epilepsy.
“It took about 12 months to get the medication right but he’s flying ever since and hasn’t had a seizure in over two years now,” says Valerie.
She adds: “Adam was always a handful, we knew that but we made the decision to keep him at home. He would religiously go to bed at 8.30pm but this morning for instance he started his day at 2.30am and he will go all day long no problem.
“He always did that. I would always say to people that I could go one, two and three nights without sleep but on the fourth night I would crash but Noel used to be able to step in and help,” says Valerie.
The last time Noel was in hospital he was in isolation for five weeks.
“I couldn’t go outside the door of the room,” he recalls.
“And, I couldn’t go in because we had the ‘flu at home,” adds Valerie.
With Noel no longer able to work money is obviously tight and Valerie took a part time job, some 15 hours a week, 32 weeks in the year. However, while her Carer’s Allowance wasn’t cut, Noel’s Disability Allowance was, to just €33 a week. Frustration isn’t the word for it.
One consolation is that friends and neighbours have been really good and the community comes together annually for a fundraising swim for Adam. It didn’t take place last year but it’s full steam ahead for the event at Aughris beach this year on St Stephen’s Day at noon.
Sponsorship cards are available or donations can be made on the day. An extension to the family home is needed. A grant of €28,000 is available but it won’t be enough to do what needs to be done with their home. A major push towards achieving this goal will start in the New Year.
Adam’s room is upstairs and there’s a downstairs bedroom but Noel cannot go up and down stairs due to the condition of his legs.
“There’s no one to help me lift Adam in and out of the bath at night.
“There’s no one to help me keep an eye on what is go- ing on up- stairs,” says
Valerie.
In the last three months alone, Noel has had three ambulance trips into Sligo University Hospital. His bag is nearly always ready.
“On the first occasion I was choking. The Panniculitis had gotten into my throat and it had closed in,” says Noel.
On the bright side he is now down to just one ulcer on his leg. He did have fifteen, the biggest measuring 13cm by 11cm.
He is philosophical about the drugs which, while tackling his ulcers, have damaged his bone marrow.
“They had no choice. They had to go with it,” he says.
It’s literally taking one day at a time for the Kennedys.
“The amount of stuff I’ve had from the start to where I am now........I’m good today but tomorrow I could wake up and ask do I have to get up?
“This morning I was able to get up and there wasn’t a bother on me and I was able to help Val,” says Noel.