A Co. Cork agricultural science student who has benefited from a liver transplant is urging young people to discuss the issue of organ donation with their families.
Edel Cashman (21) from Carrigtwohill made the appeal to coincide with the launch of organ donor awareness week. The campaign which takes place from March 30 to April 6 is organised by the Irish Kidney Association and supported by the Organ Donation Transplant Ireland.
Edel said that while young people can think they are invincible, they should start the conversation with their families about their wishes on organ donation.
Organ donation is not something that is at the forefront of young people’s minds but nobody knows what’s around the corner.
As well as burying their heads in the sand about organ donation, young people also tend not to give much thought to the damage that excessive consumption of alcohol can cause to their liver, Edel said.
“I’m all for having craic but a lot of people are unaware of the damage they are doing to themselves through drinking copious amounts of alcohol. If you don’t drink you’re often looked as being no craic but you can have a good time without alcohol.”
Edel underwent a liver transplant last October and is planning to return to UCD in September. In the meantime, she is helping out on the family poultry and dairy farm.
Diagnosed
When Edel was nine years old, she was diagnosed with autoimmune hepatitis, with a slight overlap of primary sclerosing cholangitis (PSC).
“I attended Our Lady’s Children’s Hospital in Crumlin until I was 16, when I was transferred to Dr. Orla Crosbie’s clinic in Cork University Hospital (CUH) and later to the liver transplant unit in St. Vincent’s University Hospital,” said Edel.
Growing up with a long-term illness was tough. I was very aware of the fact that I was different, that I was sick. There were very few times when I would truly forget that I had this disease.
“Once they found the right dose of medication for me, I was stable, and I looked normal. Nobody knew I was sick, and I preferred to keep it that way. I didn’t want people’s sympathy.
“The hard times were when I would have a flare up. I got blood tests done about once a month and several times a year, Mam would get a phone call to say that the liver function tests were elevated and I needed to go on a high dose of steroids to stop the ‘irreparable scarring’, a term we became very familiar with over the years,” Edel said.
“It was very hard for Mam having to tell me this. My stomach would sink and I’d sigh and think: ‘Here we go again.’ I knew what came with the steroids: sleepless nights; night sweats; insatiable appetite; and worst of all, a bloated face and belly. That was horrible. I was so self-conscious, I hated how I looked,” she said.
“It was even worse when I was a bit older – 14 or 15. It seemed to me like every other girl my age was out with boys, looking amazing and I was chubby and tired, unable to do as much as everyone else.
Any cough or sniffle I got usually turned into an infection, so I had to rest and dose myself with lemon and honey, usually followed by an antibiotic. It was just the way it was for me.
Edel managed to get through primary and secondary school. “I got a good Leaving Cert and a place in UCD to study agricultural science. I couldn’t wait to start college, meet new people, try new things. I found first year tough because I was living away from home.
“I was very tired a lot of the time and I got sick a few times and had to take a few weeks off. But I got through it and I couldn’t wait for second year. I was living in a house in Ranelagh with my best friends and the start of the second year of college was the best time of my life.”
However, after going home on a bank holiday weekend, Edel felt very unwell. “I went to A&E in CUH and spent a week in intensive care before I was transferred by ambulance to intensive care in St Vincent’s.
“I spent another week there, and the following two weeks in the liver ward. I had had an infection in my liver which caused sepsis.
‘Scariest time’
“I was assessed for transplant. That was the scariest time of my life. I couldn’t process what was happening to me. I had been so well, life had been so good and now suddenly here I was, sitting in a hospital room, barely able to walk and unrecognisable to myself.
“I was so thin, so sick looking, so jaundiced, that I didn’t want anyone to see me. I couldn’t do anything for myself. It was humiliating. The pain and discomfort from my tummy full of fluid is something I don’t think I will ever forget. I was so scared that I would never look normal again.
My name was placed on the liver transplant waiting list on December 12, 2016. So began the long, hard wait until I got the phone call that changed my life. Waiting for the transplant was the hardest time in my life. I tried to continue with college, and I managed to complete second year, but it wasn’t fun.
“My symptoms weren’t as severe as most people waiting for a liver transplant and I think that’s part of the reason why I was waiting so long. I didn’t have ascites – an abnormal build-up of fluid in the abdomen – but I did have a lot of fluid in my legs and ankles especially.
“Although this seems like such a small thing, it affected me hugely, being a 20-year-old girl. I had to plan my day around finding time to elevate my legs. My skin wasn’t too yellow, and most people didn’t know how sick I was. It was the fatigue that crippled me.
“When I was a year waiting on the transplant list, there was a question of whether I needed to remain on the waiting list. I fought to remain on it because I had waited so long already, and I had focused on keeping myself as healthy as possible. The week before I got the call was the lowest I have been. I felt as if the right liver was never going to be available to me.
“The night I got the call was a night I will never forget. Thankfully, the operation went really well, and I woke up in intensive care with my mam and dad beside me telling me I had a new liver.
A ‘rollercoaster of emotions’
“I spent nearly two weeks in hospital following the operation and those two weeks were hard. I had never really thought about the initial recovery. I always just thought about life when I would be well again. There was a lot of pain, discomfort and a rollercoaster of emotions.
“But once I got home, I recovered so quickly. I could see myself getting stronger every day. The difference in my life now compared to before the transplant is phenomenal.
“I still haven’t gotten used to it and I hope I never will because I take nothing for granted now. The ability to hop out of bed with no pain, to put on my own socks, to shower myself, to workout in the gym, and to lift buckets of milk across the farm to feed calves.
“I get up at 7:30am and work down on the farm and I keep going until 10:00pm. I’m going back to college and will be able to enjoy the last two years of my course.
“I’m going to get involved in societies and sports and I’m going to socialise as much as I can. I’m going to graduate, get a job, hopefully have kids someday. My sister is living in Abu Dhabi and I will travel to see her this April.”
Edel is now keen to increase awareness of the importance of organ donation.
I don’t know who my donor is, but I am and forever will be so thankful to her. She has given me the chance to live my life again, the chance to plan – the chance to press play. I will never be able to thank her and her family enough.
Organ donor cards can be had by phoning the Irish Kidney Association on: 01-6205306; or free text the word DONOR to: 50050.
You can also visit: www.ika.ie; or download a free ‘digital organ donor card’ APP to your phone. Information on organ donation is also available at post offices; GPs’ surgeries; and pharmacies.