Katie’s €120k gold standard CF legacy

Cystic Fibrosis (CF) patients can now look forward to “gold standard” testing equipment, previously only available at international specialist centres.

All proceeds from the Truck Run 4 Katie fundraising event have been used to purchase state-of-the-art equipment for the Adult Cystic Fibrosis Unit in the Leben Building at University Hospital Limerick (UHL).

Katie Drennan, who died in February 2015 aged 24, tirelessly campaigned for better services for CF patients in UHL. The Truck Run 4 Katie, which was held in her memory last September, raised more than €120,000.

Respiratory consultant Dr Brian Casserly said the new equipment means the hospital is now “operating at an international standard, above and beyond national standards for the treatment of CF patients”.
“University Hospital Limerick wants to be the leading light in terms of CF and this is one step in that direction,” he added.

CF patients attending UHL can now avail of equipment that provides direct measurement for exercise tolerance and capacity. Previously, it was restricted to just measuring lung function capacity.

Dr Casserly said emerging best practice suggests measuring for exercise tolerance and capacity is the “gold standard” for assessing if a patient is eligible for a transplant. It is a better measurement for how patients will do in the long term, he said.

“Being able to assess directly in UHL whether a patient’s exercise output is deteriorating and therefore they are progressing towards transplant is a huge advantage compared to previously.
“Even in Dublin, a patient may not be able to access cardiopulmonary exercise testing. It is an advance in terms of national care, not just local care.

“This is cutting-edge equipment at an international level. In most international transplant centres, cardiopulmonary testing would be the gold standard testing, which is now available in UHL. We can now assess whether the exercise regime being used by a patient is actually having a positive effect,” he explained.

Dr Casserly feels this equipment is a fitting tribute to Katie’s fundraising work and the way she lived her life.

“I knew Katie well. One of the things that Katie took to heart was the message in relation to exercise and how important it is for CF patients.

“Katie understood that exercise is a really important and integral part of their care. Sometimes patients don’t really understand the benefits of exercise because it doesn’t come in a package but Katie did.

“She was very involved in her exercise programme and in encouraging other people to get involved as well. She was a shining example of the commitment that is required for a successful exercise programme.

“Katie and her brother, Jordan, were big advocates of exercise and how important it is in CF care and she would have been delighted that this message is being carried on to the next generation of CF patients.

“Up to now, we have only been able to assess lung function in isolation but this equipment allows us to assess how it is impacting on the exercise performance in total. Sometimes we have a situation where a patient’s exercise tolerance is improving but their lung function isn’t. This allows us to determine if this is the case.

“CF patients tend to have a lot of bullous disease, so using a body box is preferable for these patients. The new body mass scanner measures a CF patient’s weight, separating it into muscle and bone, so a doctor can assess how much weight is actually muscle, fat and bone.

“The bones of CF patients thin dramatically, which can have an influence on their weight. Patients can also lose muscle mass, which can have an impact on weight. They tend to have very little body fat as well.

“Doctors want CF patients to gain bone density and muscle mass and this machine allows us to see if we are achieving this,” he added.

Katie’s mother Linda is delighted that the money raised from the truck run has been used to purchase this equipment.

“Katie went to great lengths to reach adults and children, young or old, to fundraise for equipment that would benefit all CF patients. Katie was always looking forward to the delivery of the new CF unit,” she said. If Katie was here she would be delighted that so much modern equipment is now available in the hospital, which has been bought as a result of Truck Run 4 Katie,” Linda continued.

“It is unfortunate that a charity was set up because of her passing but it has been a huge achievement that we have been to raise so much money in her name.

“The response to the event was overwhelming and we got great support from truckers because we are in the haulage business. All the money raised has purchased equipment that will be of great benefit to all CF patients,” she said.

Linda said Katie, who was born one month early, was actually brought home from St Munchin’s Regional Maternity Hospital in a truck, as her husband, Eugene, had to do a milk run.

Linda and Eugene paid tribute to all the committee members – Kevin Mulqueen, Colin Hegarty, Kathleen Rees, Gerry Egan, Barry Conway, Kevin Moynihan, Shona Cullinan, Aiden Lee and Niall O’Flaherty – for all the hard work and their commitment shown to the charity since its inception.

“This also would not have been possible without the enormous support of all the truck drivers, passengers, truck companies and volunteers who helped us in so many ways to make this event possible, successful and memorable,” she said.

Truck Run 4 Katie chairman, Kevin Mulqueen recalled the whole weekend was “overwhelming” for the committee. “We can’t thank people enough. It has also raised a lot of public awareness about CF throughout the country,” he added.

Having organised the Full of the Pipe Truck Show Ireland with the help of Colin Hegarty, Kevin said a lot of people who attended that trucking festival also came to support the Truck Run 4 Katie.
Truck Run 4 Katie, secretary, Caroline Lucas, said she is looking forward to the second event on Saturday, September 23 and 24 at the Auburn Lodge Hotel, Gort Road, Ennis.

Having seen the new equipment at the CF unit in UHL, Ms Lucas said the committee would be purchasing more equipment that will make a different to patients in the region.

“From knowing the Drennan family and their children, Katie and Jordan, for many years, that is why I wanted to get involved in the committee,” she said.

By Dan Danaher