Monday 22 January 2018

How a double lung transplant transformed my life with cystic fibrosis

Daragh Kenny is a musician who has been in and out of hospital all his life because of cystic fibrosis. By age 20, he was tied to an oxygen tank. But, he tells Joy Orpen, a double lung transplant has transformed his life

For the first time in years, musician Daragh Kenny can breath easy. Photo: Mark Condren
For the first time in years, musician Daragh Kenny can breath easy. Photo: Mark Condren

Joy Orpen

Daragh Kenny (26) plays drums with great gusto and consummate skill. Yet a few years ago, he could barely summon up the energy to drag himself to sit behind his drum kit, never mind get a pulsating rhythm going. What is different these days is that Daragh's bunged-up lungs have been replaced with much healthier ones. And for the first time in many years, he can breathe easily.

He was just three months old when he became ill for the very first time. "I got pneumonia and turned blue," he explains. "So, I had to be rushed to hospital, where I was diagnosed with cystic fibrosis (CF).

CF, which is triggered by a defective gene, causes secretions in the lungs and the pancreas to be thick and sticky; this makes breathing difficult and prevents the absorption of vital nutrients from food. These two issues can lead to all sorts of complications, including serious infections, frequent hospitalisations and even premature death. So, the health of a person with CF requires much attention and constant intervention.

Failure to gain weight was certainly an issue when Daragh was growing up, as was breathing. So he had to use a nebuliser twice a day, and take pills to replace the enzymes he lacked, for the absorption of nutrients. These enzymes are normally produced by the pancreas, but blocked pancreatic ducts prevent the enzymes from reaching the intestines.

Otherwise, Daragh's childhood in Blessington, Co Wicklow, was uneventful. But once he became a teenager, there was a gradual decline in his health. By the time he began a degree in film and media studies in Dublin, his life was already being badly affected by CF. "As the years passed, I was getting more and more infections and more run down," he explains. "I was in and out of hospital all the time. It reached a point where all I could manage was the odd cup of coffee with friends."

By now Daragh was living above his father Dan's SuperValu store on the high street in Blessington. Some days, he could hardly climb up the stairs. By the time he was 22, Daragh was so ill, oxygen was prescribed. At first, he resisted the idea. "I thought I wasn't that sick. But after a while, I had to admit I was." Around this time, he was playing drums for a band called Mcgalligog.

"We were going places, playing really intense, hard songs," he says. "In May 2012, we were offered a two-week tour in Germany, but at the last minute, doctors said my oxygen saturation levels were so low, I couldn't go by plane. But then my dad said, 'Right, I'll take you and Siofra to Berlin in a campervan' - Siofra is my sister. And that's what he did. It was some ordeal, travelling all that way on oxygen. I only just scraped by; but the whole experience was absolutely brilliant. However, the second we got back, I had to go into hospital."

In 2013, Daragh got an unusual Christmas "gift" when he was put on the transplant waiting list. That meant he had to have his phone switched on at all times in case a set of lungs that were suitable for him became available. He was already on oxygen 24 hours a day. When the much-awaited call finally came, Daragh was visiting his mum in Wexford. An "ambulance taxi" with a police escort whisked him up to the Mater Misericordiae University Hospital in Dublin, where heart and lung transplants are done nationally. Following an eight-hour operation, Daragh woke to find he was hooked up to a ventilator and had tubes draining his lungs. And even though he was given comprehensive pain relief, he still felt terribly uncomfortable. "The drains were the worst part by far," he recalls. "It was like having a garden hose up your lungs. While they were in, I could hardly move."

When the levels of oxygen in Daragh's blood (oxygen saturation) were measured prior to surgery, they were never more than 80pc, even though he was on oxygen 24 hours a day. Without oxygen, his levels could plummet to 40pc, which is just not physically sustainable. However, following his double lung transplant, it had reached 99pc - a healthy person would normally have a reading above 95pc.

About a week after the operation, those life-saving but pesky drains were removed, and Daragh could breathe again, in all senses of the word. Prior to his surgery, the only time he dared manage without oxygen was while having a brief shower. "And I didn't shower all that often, because it was too traumatic being without oxygen," he explains. "Now, the sky's the limit."

Daragh's dream is to become a full-time musician. Right now, he is the drummer with a dynamic heavy metal band called Svet Kant. "It's the hardest music I've ever played," he says. "But it's very progressive, experimental and almost operatic at times. I've grown so much since I've been with this band." Having seen clips of them on YouTube, it's clear they are indeed extremely talented.

In the meantime, Daragh's other interests lean towards the arts in general. Comic-book figures, loads of DVDs, posters, photographs and music paraphernalia dotted around his apartment attest to that reality.

But another abiding passion for him is raising funds for CF research, and for organ transplant services. Not so long ago, talented friends in the music industry, and the local community, put on five mini-musicals in Blessington. They raised €33,000 for the Mater Foundation (MF), the official fundraising body of the Mater Hospital. MF manages appeals on behalf of various departments within the hospital, including the heart and lung transplant unit.

Referring to the fundraiser, Daragh says: "It was just brilliant. Lots of local people got involved. And special thanks must go to my dad, who did so much hard work to get other businesses on board to raise funds."

This talented young musician will continue to support these good causes. In the meantime, he urges everyone to carry an organ donor card. "If it wasn't for my donor, I wouldn't be here now. I like to think I carry their life along with my own. Get an organ donor card now and tick that box," he urges.

For more information on the Mater Foundation, see materfoundation.ie/appeals

This year, Cystic Fibrosis National Awareness Week takes place from April 10-16. Volunteers are invited to sell purple roses on 65 Roses Day, April 13. For more information, contact Cystic Fibrosis Ireland, tel: (1890) 311-211, or see cfireland.ie

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