TIME IS OF the essence for patients waiting for an organ transplant.
A number of people are working behind the scenes, 24-7, so that if and when an organ becomes available, a person who needs it gets it as soon as possible.
Organ Donation and Transplant Ireland (ODTI) works with transplant recipient centres and hospitals throughout Ireland. An organ procurement coordinator is available 24 hours a day, 365 days a year to coordinate organ donation.
The on-call coordinator can be contacted at any time by staff from intensive care units (ICUs) or emergency departments anywhere in the country.
Orla Nolan, one of six ODTI coordinators, explains: “ICUs will generally ring us or sometimes emergency departments will ring when a potential organ donor becomes available.
“When referrals come into the office, we take a very detailed history of the person in order to give the maximum amount of information to recipient centres.”
Organ transplantation takes place in three national transplant centres, all located in Dublin.
Beaumont Hospital provides kidney transplantation and is the national centre for living kidney organ donation. The Mater Hospital provides heart and lung transplantation. St Vincent’s Hospital provides liver and pancreas transplantation. Some paediatric transplants take place in Temple Street Children’s Hospital, while others are referred to the UK.
When an organ becomes available for transplantation, the National Histocompatibility and Immunogenetics Service for Solid Organ Transplantation (NHISSOT) in Beaumont matches the most compatible recipient to the donor, in consultation with the National Virus Reference Laboratory and the recipient centre.
While this process is happening, one of the ODTI coordinators will travel to the hospital where the deceased person’s next of kin is deciding if they will donate their organ(s).
Nolan tells TheJournal.ie this can be an incredibly difficult process for the family, particularly if their loved one died in sudden or tragic circumstances.
“We meet with the family and go through the criteria [of organ donation] with them.
Often we get to know who the donor was and what type of person they were. We develop a bond with the family and with the donor. Dignity and respect is paramount to the process.
“It can be quite traumatic for the family, it’s one of the last things they’ll do for a loved one…
There are no words to describe what they’re doing, the situation can be so traumatic. They are amazing people really. Every time I meet a family it amazes me how they’re able to make this ultimately life-changing decision for other people.
“Very often the family focuses on the recipient and how they’re doing, the joy that’s coming into their life.
“It’s bittersweet for them – they’re losing a loved one, but ultimately there’s an element of joy because someone is getting a call tomorrow saying their life is going to be changed and enhanced. It’s a very humbling experience, you have to admire these people.
“It’s the emotional aspect of the job, but also the very privileged part of job.”
Nolan, who previously worked in the Mater Hospital, says the coordinator is there to support the next of kin and answer any questions they may have about the process.
“We’re with the donor and patient through the whole procedure to the very, very end … We’ll support them in any way we can.”
Staying in touch
Meetings between the recipient and donor family are not facilitated in Ireland, in order to protect people’s privacy and anonymity. However, the donor family receives a letter four to six weeks after the transplant to hear how the recipient is doing.
Sometimes the donor family wants to receive correspondence from the recipient and the ODTI office acts as a buffer in this instance.
“Some people like to check in further down the line,” Nolan explains, “Sometimes people get in touch 10 or 15 years after the surgery to see how the recipient is doing. People sometimes also exchange Christmas cards or letters around the time of significant milestones in the recipient’s life.”
Other people don’t want to stay in touch, for various reasons.
“It’s not easy for the recipient to write that letter. It can be very sad to sit down and say thank you to someone who is grieving. It can take quite some time to write the letter. One person could write it in one go, but it could take 100 attempts for another person to write it,” Nolan tells us.
She adds that if a recipient chooses to not get in contact, it doesn’t mean they’ve forgotten about the donor family or what they have done, noting: “Just because they don’t write a letter doesn’t mean they don’t remember the donor family.
“You also don’t know how a recipient will react to the transplant, you have to be mindful and respectful of that. There are different things going on in people’s lives.”
Opt-out system
Overall, 280 organ transplants were carried out in Ireland in 2016. This marks the second highest yearly performance achieved, with an average rate of 23 transplants per month.
The organ transplant figures for 2016 were:
At the opening of the ODTI’s new headquarters on Temple Street in Dublin city last month, Health Minister Simon Harris said he hopes an opt-out organ donation system will be in place in Ireland next year in an attempt to increase the number of donors.
In 2013, an Oireachtas Committee found that changing to a ‘soft opt-out’ system could “vastly increase“ Ireland’s rate of organ donation.. This type of system would assume a person wants to be an organ donor in the event of their death unless they state otherwise, but the final say would still remain with their next of kin.
At the time, Harris said: “It is important that ultimately the family always has the final say in relation to the next of kin and I think that’s right and proper. But [a soft opt-out system] also makes it easier for a family relative to make what can be a difficult decision at a vulnerable time if they know the wishes of their deceased relative…
It really is the gift of life, you can’t take your organs with you … you have the opportunity to give life to so many others.
Instead of an opt-out system, the Irish Kidney Association (IKA) has 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.
“I personally believe in the opt-out system, I believe we’ve seen good beneficial impact from it in other countries, most recently in Wales. But I do think the idea of a registry is also well worth doing so I don’t think the two ideas are mutually exclusive,” Harris added.
Nolan says, whether or not an opt-out system is introduced here, greater awareness about organ donation is needed and people should tell their loved ones their wishes about organ donation.
The gift of life
TheJournal.ie recently spoke to the parents of Nevaeh Gale-Spollen, whose organs were donated after she died from a brain haemorrhage shortly before her 10th birthday.
Her mother Crystal had this advice for anyone who may find themselves in the difficult situation of having to decide if their loved one’s organs should be donated: “Don’t look at it as giving away a part of your child, somebody’s helping keep part of your child alive and your child is helping keep somebody else alive.
“This person will always carry a piece of your child, your mother, your brother, your sister, your auntie, your uncle with them. Every time you feel down or you worry did you do the right thing, just think about this other person’s family … they will obviously benefit and they’ll spend many happy days together.”
Nolan describes organ donor families as “a unique community” who give people the ultimate gift at a very difficult time in their own lives.
“One family summed it up for me when they said, ‘Organ donation makes sense of a senseless situation’,” Nolan says.
“A death has occurred, but a life is also saved and enhanced.”
Nolan works alongside fellow ODTI coordinators Caroline Lynch, Lynn Martin, Fiadhna McMonagle, Emma Corrigan and Jean O’ Reilly. To read more about their work, click here. The ODTI’s 24-hour referral number is 1890 100 016.
Organ donor cards can be obtained by phoning the Irish Kidney Association 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.
The national organ donation commemorative garden is in Salthill, Co Galway. It was created by the Strange Boat Donor Foundation, which was founded in memory of Éamonn Goggin from Spiddal, whose organs were donated after his death in a car crash in 2006. For more information, click here.
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