Daily battle of living with CF

THE Drennans could be forgiven for feeling crucified in the lead up to the Easter celebrations in 1993.
Within the space of three days, Linda and Eugene Drennan had to cope with the devastating news that their two children had a long-term, life-threatening illness.
Katie Drennan was just two years and eight months old when a test at the Mid-Western Regional Hospital, Limerick confirmed she had cystic fibrosis (CF).
Her brother, Jordan, who was one year and eight months old, was routinely checked three days later and was also diagnosed with CF on Good Friday.
Linda had never even heard of CF and was shocked it was a hereditary disease given there was no previous history in her or her husband’s family.
Ireland has the highest rate of CF sufferers and carriers in the world. According to the Cystic Fibrosis Association of Ireland, one in 19 people in the country are carriers of the CF gene but two carriers are needed to parent a child with CF. Even when the two parents are carriers, there is a one in four chance of a child being born with CF.
Linda is one of a family of 10 and out of her nine siblings, two are carriers of the CF gene. She has two brothers who are married to wives who are carriers and they also have two children but they do not have CF.
“We are lucky that two children are the only two CFs from such a big number of people. It was like a lottery that both my children ended up with CF,” Linda acknowledged.
Linda and Eugene decided to send Katie and Jordan to Kilnamona National School, a small school, a few miles from their home in Ennis because of the reduced risk of cross infection. Katie ended up with three pupils in her class, whereas in Ennis she could have had 43 in her classroom.
Both of them stayed out of school any time any child was sick to avoid contracting their illness. Chest infections were a regular problem for both of them and like most CF sufferers, they have to take digestive enzymes before meals to help them digest their food.
Katie played camogie in school but when she was five, she was diagnosed with cirrhosis of the liver. Two years later, a liver specialist in Our Lady’s Hospital for Sick Children, Crumlin confirmed her spleen was enlarged and advised her to give up all contact sports.
At the time, medics were very surprised she was diagnosed with a liver problem at such a young age, as most sufferers are diagnosed in the late teens or early 20s. As a result of Katie’s case, doctors started doing routine liver checks on CF patients, which is now part of an annual assessment programme.
When Katie was 14, she was in hospital for a week having her IV and Linda was in a Galway hospital having surgery. When Katie was discharged, she was looking for pints of water, had treble vision and couldn’t walk straight.
Linda knew there was something amiss. She took Katie to Limerick hospital and after a lot of persuasion, tests were carried out that confirmed she had diabetes. This shocked doctors, as this condition isn’t normally associated with CF. Now CF patients have regular tests assessing their sugar levels. Katie had to keep a constant check on her diabetes, liver and chest infections.
At the age of 10, Katie was diagnosed with a non-CF related auto-immune disease, HPS, a form of blood vessel and joint inflammation. She broke out in a meningitis-type rash, which left Linda very frightened. At the time, the family was told it was a childhood illness that occurs just once but Linda had her sixth serious bout a few months ago.
It keeps lingering and reoccurs very often, affecting her walk as a result of swollen joints and ankles. Katie is often confined to bed because she gets so sore and painful.
The 20-year-old missed a lot of time at the University of Limerick last year, couldn’t sit her exams and decided to repeat the second semester of business studies and a major in human resources course.
She loves attending UL but steers clear of anyone who has an infection. In spite of the large amount of antibiotics she has taken over the years, she still hasn’t built up immunity to them.
So how does Katie cope with all her sickness?
“You do get knocks but you carry on the best you can. You see people who have good health and don’t appreciate it but I would not be envious of them. Having CF just makes you appreciate everything even more.
“We have missed holidays when one of us got sick. We know we get to some things and we don’t get to everything. If you book a holiday, six months later you don’t know whether or not you will have a chest infection and you may not get to go. When you get away to do things, you appreciate it a lot more,” she said.
Katie has a part-time job doing VIP floor service in the Queen’s nightclub, which is a huge boost for her independence. However, she has often taken her pain-relief medication to get her through work.
“I view achievements as different things. Getting to work for me is a big achievement because I get a chance to go out and meet my work friends,” she explains.
All the family were involved in TLC4CF, an initiative formed by the Tipperary, Limerick and Clare branches of the Cystic Fibrosis Association of Ireland, which secured a new CF out-patients unit in Limerick hospital. Katie believes this new unit will improve the quality of life for CF patients in the region.
Katie and Jordan have got great support from their friends, who are constantly getting involved in organising fundraising events for CF and collecting sponsorship. Friends have joined Katie and Jordan to wax their legs and dye their hair different colours.
When both of them are too sick to go out, their friends are happy to call to their home unless they have a cold or ’flu and very often, there could be a very large crowd of teenagers at the Drennan household at weekends. Some of their friends are so interested, they know their individual treatment plans and chastise them when they are not being adhered to.
Appearance can also be deceptive for CF sufferers. Katie explains a female CF patient can be very sick, put on make-up and look perfect.
While Jordan played hurling when he was younger and was generally reasonably healthy, he wasn’t allowed out in bad weather to avoid getting colds and ’flus.
A lot of his IV was carried out at home. His main health problem struck him at the age of 15 when he suffered from a collapsed lung totally out of the blue. Jordan had been getting pains but he never had a lung collapse before so he didn’t really know what to look out for.
The Drennans were due to go on a holiday to Portugal when Jordan had a yearly assessment chest x-ray taken a few days before they left. The day before they were due to fly, Linda got a phone call from the hospital to come immediately. It transpired a doctor only read his x-ray on that day, which showed his lung had collapsed. At that time, no one read the x-rays before CF patients left the hospital. Now all CF x-rays have to be read before the patient leaves. Katie says health professionals are learning new information from their experiences.
When Jordan was 17, he suffered from a serious double lung collapse, which necessitated treatment in St Vincent’s Hospital for seven weeks. “It was scary to have a double lung collapse. I was in bad shape at the time and I had oxygen the whole time. I couldn’t even walk to the ensuite bathroom,” he said.
Jordan had an operation to glue his left lung to his chest wall to prevent it from collapsing again.
At one stage, Jordan and Katie were both receiving treatment in St Vincent’s after the latter was hospitalised for liver assessments.
The family spent that Christmas and New Year in St Vincent’s. While it was very stressful having two teenagers in hospital, it made it a bit easier for Linda having the two of them in one place.
When Jordan was being treated in Limerick hospital, there was no dedicated CF specialist but this has been addressed by the appointment of a new respiratory consultant with a special interest in CF, Dr Brian Casserly last year.
Jordan, now aged 19, is studying computer games development in Carlow and has to take his medication and complete his exercises in the morning before he goes in. He repeated first year after missing a lot of time as a result of chest infections.
“It is hard sometimes. It is constant every day. You have to keep putting on weight or remembering to take medicine or do exercise. It is hard to fit it all into one day, every day.
“CF gets harder as you get older but you are more experienced and able to deal with it better and able to assess it. You are more susceptible to more problems as a teenager,” he said.
Proud of her children, Linda said,  “They are two very determined young people and try not to let anyone hold them back.”