“MAKING A CUP of tea and getting into car the car to be able to go to town will be never taken for granted for me.”
It’s the little things that have made a big difference in Shauna Morrissey’s life since she got a liver transplant in 2012.
The 25-year-old has cystic fibrosis (CF) - an inherited chronic disease that primarily affects the lungs and digestive system of about 1,200 children and adults in Ireland and some 70,000 people worldwide.
CF can greatly impact the lifespan of those with the debilitating condition. Ireland has more cases of it per head of population than any other country.
Shauna still has health issues and a rigorous daily routine involving physio, nebulisers and medication, but knows she is very lucky to have received a transplant – saying the surgery saved her life.
The Tipperary native told TheJournal.ie two separate issues “bumped me up the list” – liver failure and lesions on her liver that turned out to be cancerous.
Shauna says the change she experienced after the surgery was almost immediate.
“A couple of days after the transplant, when I was finally able to get out of bed and stand up, I remember going to the bathroom, looking in the mirror and seeing the colour of my eyes – they weren’t yellow anymore, they were white. That’s an important little memory to me.”
Shauna says it’s being able to do the “little, everyday things” that other people take for granted that mean the most to her.
Making a cup of tea and getting into car the car to be able to go to town will never be taken for granted for me. Being able to go to college, to have friends, to be able to go to the cinema … The fact that I don’t have to stay in bed all day.
Shauna enrolled in Limerick IT as a mature student last year.
“I didn’t do a fantastic Leaving Cert. I was very sick at the time, that had a heavy impact. I’m glad I waited and went back as a mature student, it worked out for me in that way.”
Shauna’s currently taking some time off from college as she has been unwell, something she’d rather not do but knows is necessary.
“Even just telling myself ‘No you’re not going in, you’re staying at home and resting’ is hard enough. I’m stubborn, I want to do everything, I don’t want to be sitting at home,” she says.
Organ donation
Shauna wants an opt-out system for organ donation to be introduced here, something that’s already in place in countries such as Wales and France.
Health Minister Simon Harris is considering this option. In 2013, an Oireachtas Committee found that changing to a ‘soft opt-out’ system – where it’s presumed a person wants to be an organ donor unless they state otherwise -could “vastly increase“ Ireland’s rate of organ donation.
The Irish Kidney Association (IKA) has instead called for an organ donor registry to be set up to “increase the number of deceased organ donors”, in line with the HSE’s National Consent Policy.
Speaking at the launch of Organ Donor Awareness Week, IKA CEO Mark Murphy said: “While constantly encouraging the public to consider organ donation is essential, there is evidence that improvements in skills and techniques can also help achieve more transplants.”
In 2016, 280 organs transplants were carried out in Ireland. The IKA said 230 “were as a result of the generosity of the families of 77 deceased donors” and the remaining 50 were from living kidney donors.
According to the Department of Health, the organ transplant figures for 2016 were as follows:
About 600 people in Ireland are waiting on life-saving heart, lung, liver, kidney and pancreas transplants.
Shauna understands that grieving relatives might not want to agree to having their loved one’s organs donated. That’s why she thinks it’s important for people to have made their wishes clear, especially in the absence of an opt-out system.
“People need to be really informed and reassured this is the right thing to do.
“A girl I know who had CF died last year at 21. While she was dying she took of her [oxygen] mask to say she wanted her family to continue the campaign for Orkambi and to fight for an opt-out system. She took off her mask in her dying moments to say that,” Shauna recalls.
Orkambi
Cystic Fibrosis Ireland has said around 500 people with CF in this country have the potential to benefit from Orkambi and another drug, Kalydeco. The HSE is currently in negotiations with the drugs’ manufacturers, Vertex Pharmaceuticals.
Last year, the National Centre for Pharmacoeconomics (NCPE) assessed Orkambi and didn’t deem it cost-effective. It costs about €160,000 per patient per year.
In a statement issued last week, CF Ireland said: “The negotiations for these ground-breaking drugs are now more than nine months old. There have been repeated assurances given in recent weeks which CFI has welcomed. Cystic fibrosis patients would be very grateful for the promised announcement on a final agreement.”
When asked about the issue, a HSE spokesperson said: “The process remains ongoing at this time.”
Speaking in the Dáil last week, Health Minister Simon Harris said: ”The matter is currently under consideration by the HSE Directorate and by officials in my Department.
I expect that this process will conclude in a period of weeks. However, given the scale of the investment, the potential benefits for Irish patients and the impact of this decision on the health service overall, I would call on all deputies to allow this statutory process to be concluded.
“I am acutely aware that the last number of months have been a stressful and worrying time for CF patients and their families. However, the government’s priority is to achieve the best outcome for Irish patients and the health system overall.”
CF campaigner Jillian McNulty, who is on an Orkambi trial, recently told TheJournal.ie the drug has transformed her life.
Shauna is a candidate for Orkambi, as is her brother Andrew (32), who also has CF.
Shauna says: “The issue is that it’s not seen as cost-effective … it’s a tough one really. I know of people who have taken Orkambi and come on leaps and bounds, but I also know of people who have taken it and declined rapidly.
“That’s just the way it is, it could do wonders for somebody and not do a great job for somebody else.
I can’t say to you that Orkambi is this wonder drug and it’s absolutely going to change lives for everybody, but it will have a great impact and a great effect on some people. Whether it would work for me or my brother I don’t know, but everybody should have the chance to try it at a reduced price.
Shauna understands why some people don’t view the drug as cost-effective as it’s so expensive, however, she adds: ”I don’t like the words ‘cost-effective’, I still think you can’t put a price on someone’s life. People should get the chance to try it at a reduced price.”
The Irish Kidney Association’s Organ Donor Awareness Week is running from 1-8 April.
Organ donor cards can be obtained by phoning the IKA on 1890 543 639 (lo-call) or by texting the word DONOR to 50050 (free). More information can be read here. People can also download the IKA’s digital donor card here.
Cystic Fibrosis Ireland’s 65 Roses Day appeal will take place on Thursday, 13 April, with the aim of raising €100,000 for CF services.
Members of the public are encouraged to buy a purple rose for €2, text ’65 Roses’ to 50300* to donate €2, or complete a 65 Roses challenge – full details on this and how to donate online can be found here.
*Text costs €2, CF Ireland will receive a minimum of €1.63
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