‘I think when you are a transplant candidate, death kind of becomes a companion that you get used to’

A bittersweetness comes into all of life’s big moments now for liver transplant recipient Kate Twohig (31). She is excited to be packing her bags for a holiday in Italy with her husband, while feeling guilty that another family is having to cope with the first anniversary of losing their loved one who donated the liver.

A few months ago she was bawling at her brother’s wedding, both out of gratitude that she could be there and sadness at the thought her donor’s family would not get the chance to see their daughter or sister married, as she knows the donor was younger than her.

“I am a crier, where before I wasn’t,” says Kate, a musician and festival promoter in Clonmel, Co Tipperary. It’s understandable that the gift of a second chance at life, when you’ve faced the prospect of dying at 30, would be emotionally, as well as physically, transformative.

“I think when you are a transplant candidate, death kind of becomes a companion that you get used to,” she says. The imminent possibility of dying starts to be a normal part of conversation and you are very aware that the organ has to come from somebody who has passed away. It was why she proposed to Eoin Hally, a fellow musician known as Vale, when she did – in the summer of 2021, on the seventh anniversary of their first date.

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“Obviously, I wanted to be married to him but I didn’t know if we waited for after the transplant, which we had discussed, there was no guarantee I was going to make it out alive. And I wanted him to be my next of kin going into the transplant. I didn’t want to die without having had the chance for us to be married.”

It was a civil ceremony, with just family and a couple of close friends in attendance, before a few more friends joined them for a house party. Despite the backdrop to the day, “we just focused on the happiness at the time”.

Kate knew she had problems with her liver from about the age of 17, after being diagnosed with autoimmune hepatitis. “But it was mild and it was manageable. I was living a very normal life – seeing a consultant every six months and taking a tablet or two.”

However, an overlapping and much more aggressive condition of primary sclerosing cholangitis (PSC) was confirmed in 2017 when she was 25. It is a disease that affects the bile ducts and causes irreversible damage to the liver. Then the question of her need for a transplant was when, not if.

After being referred in 2018 from University Cork Hospital to the liver transplant team at St Vincent’s hospital in Dublin, it was May 2019 before she got an appointment there. Then another year and a half before she was placed on the transplant waiting list in November 2020

“You have to be sick enough to warrant the risks that come with a transplant,” she explains. But well enough to withstand the surgery. “I was in and out of hospital, getting more fatigued and wondering how bloody sick do I need to actually be.”

The call leading them out of ‘purgatory’ came a year ago, on October 17th, 2022

The day she was listed came as she was discharged from hospital after two weeks of treatment for two different infections. “We drove home to Tipperary, almost elated.”

They immediately packed a bag to have on standby at home from that moment, waiting for the vital call. “You wake up every day with that bit of hope and you go to bed with a small bit of disappointment.”

That was their life for 23 months but the constant sense of anticipation became the norm for them. Her phone had to be charged and with her 24/7.

“You get used to it and we became a bit braver about taking a trip to west Cork, or whatever. You do start to have a life within that weird state of purgatory you are in.”

The call leading them out of “purgatory” came a year ago, on October 17th, 2022. It was a Monday and she remembers she was trying to fill in forms for arts event funding. “I was struggling that day to care about it. I had no motivation. I remember it was half three, I was getting nowhere and I closed the laptop down and went to lie down on the couch. I was thinking: ‘When the f*** is this call going to come?’ And, yes, the call came at four o’clock that afternoon.”

It was the third anniversary of her grandmother’s death and on the same date in 2021 Kate herself had nearly died in ICU. “The 17th of October was a big date for our family, so it kind of shook us that it came in on that day.”

[ Selflessness of donors praised after 250 organ transplants take place in 2022 ]

Firstly, the couple dropped their goldendoodle, Roscoe, over to her husband’s parents, who also live in Clonmel, before driving to her parents’ home in Kilcash village, about half an hour away, and her mother drove them up to St Vincent’s. “My mother is the steadiest when it comes to emergency situations so I had her designated as the driver – she is the least aggressive driver of my Dad, my husband and Mam.”

Their anticipation was dampened by the experience of a “false call” four months previously, when she had been summoned to the hospital. She recalls sitting in St Vincent’s on that occasion hastily compiling a “handover list” for her husband, as they were only two weeks away from staging their first music festival, When Next We Meet, in their hometown. But it turned out the liver wasn’t suitable for her and “we were back in Tipperary 24 hours later, picking ourselves up again”.

Going up in the car this time, “I was very much trying to convince everyone it wasn’t going to happen – don’t get your hopes up”. But from the moment they got to the hospital “there was a different energy from the team – they seemed very, very sure that this was the right match for me”. She was wheeled into theatre at 5am on October 18th for an operation that lasted 10 hours.

“The inflammation of the liver had caused a lot of other problems throughout my abdomen, so they did have a tricky surgery.” This included the removal of her spleen, which had doubled in size. But since then her recovery could not have gone better.

“I was only 10 days in hospital,” she says with a tone of incredulity, having expected to be there for about three weeks. Now, about to head off on their 10-day holiday to Italy when we speak, she says: “It’s so strange that the last time I was away from my dog it was 10 days for a very different reason.”

She is bemused by how acquaintances don’t seem to grasp the severity of what she has been through until she tells them she can’t ever drink again

After being discharged to continue her recuperation at home, she could not drive for 12 weeks, nor do anything too strenuous such as vacuum cleaning or lifting a laundry basket. By January last she was working away for their second festival, which ran in July, and couldn’t say no to a big commission to write music for a show. One of her regrets in life had been not focusing more on composing, so the opportunity to write the music for From Out the Land, a site-specific production that was staged in the former Kickham Barracks in Clonmel in September, was too good to turn down.

Kate was banking that she would be physically strong by their busy work time of the summer months and she was. There are side effects to the “rake of medications” she’s on but it’s a small price to pay for swapping a potentially fatal illness for a more manageable one and she is “incredibly grateful”.

She is bemused by how acquaintances don’t seem to grasp the severity of what she has been through until she tells them she can’t ever drink again. She had given up alcohol of her own accord a number of years ago but, like all liver transplant recipients, had to sign a contract saying she would not take illegal drugs or consume alcohol ever again. (They are also asked not to drink alcohol-free beers, more for image reasons rather than any medical concern.)

It is hearing that she is tied in to sobriety for the rest of her life that evokes people’s expressions of concern, “ah no, surely…” as they wonder how she is going to survive in music circles and attending festivals without alcohol. She is standing there thinking: “I’m alive – the other option was to drink and die so I’m cool with it. Your pity is unwarranted,” she laughs. “I am feeling so well – it is mind-blowing.”

She has every intention sending a letter to her unknown donor’s family, which is facilitated through the transplant programme, but hasn’t done it yet.

“I am on the cusp of writing to her parents. It was something I never wanted to rush. It’s nearly a year ago and I can’t believe I haven’t written it but it’s such a huge thing and I don’t even know how to start it yet. Words seem a bit fickle in this situation.”

Transplants would not have been on Kate’s radar before her own need arose and she now feels a responsibility to encourage people to have a conversation about organ donation with their families.

“Because this one person decided to give, I can now look forward to a life,” she adds. “Without that, it was certain death for me.”

Organ donor cards: ‘You don’t have to make a big deal of it’

Do you know that on the back of your credit-card-style Irish driving licence, the code 115 in the lower left-hand corner signifies that you have consented to be an organ donor?

Whether or not you have signalled your intention there, it is still a good idea to make sure your next of kin know what your wishes are in that respect.

“You don’t have to make a big deal of it,” says organ donation clinical specialist Dr Catherine Motherway. “It only takes a second and if, God forbid, something horrible happens, your family will know what to say when they are approached.”

These are always sudden deaths, she says, with families caught up in a tragic scenario. It is easier for them to make the decision whether or not to go ahead with the donation if they are in no doubt about what the person would have wanted. The latest available annual report of the HSE’s Organ Donation Transplant Ireland, for 2021, when donations and transplants were reduced by the effects of Covid-19, shows that of the 65 deceased donors that year, 35 died of a brain bleed, two of a stroke, 17 of hypoxia (lack of oxygen) and 11 of head injury.

The long-promised “opt in” system, under which all adults will be considered to have agreed to donate their organs if suitable after their death – unless they have put their names on an “opt out” register – is yet to become law. It is provided for in the Human Tissue Bill 2022, which reached the committee stage last June.

However, even when/if that becomes law, family members will still be consulted before a donation takes place. While the deceased’s wishes will be central to the discussion, if the family objects it will not proceed.

The benefits of a donation to organ transplant recipients are huge and very obvious, says Motherway, who retired last January from her post as head of the intensive care unit in the University Hospital Limerick. But she believes the way it also gives some comfort to donor’s families is underappreciated.

“It gives them a great sense of pride, I think, and it helps – inasmuch as anything can help when you lose somebody young.” It is also a consolation to ICU staff who hate to lose patients, she stresses. As intensive care doctors, “our aim is to save life but our other aim, at the end of life, we want to offer organ donation to each and every family where it would be appropriate”.

They are keen that every death in the State’s 26 ICUs is examined to make sure no opportunities for organ donations were missed – “and if they were missed, why they were missed and go back and fix that”. A pilot project showed that there were 10 cases of “potential missed opportunities” for organ donation in a survey of six hospitals over four months, according to the results that were published in September by the National Office of Clinical Audit. A suitable transplant recipient in the Republic is always sought first for organs donated here but, if there is no match, they will search abroad.

“I want no family to think they didn’t get the opportunity when they could have and, two, I want no patient not to get an organ because we didn’t ask,” she says. “Whatever decision the family make at that time, I want none of them to regret it” – whether it is to give consent or withhold it. “I don’t mind if people say no, if that is what their person would have wanted.”

A total of 250 organ transplants took place last year, with kidney transplants, which can involve living donors, accounting for more than half. Some 86 deceased and 33 living donors gave their organs for the transplant programme. Motherway says activity is returning to pre-Covid levels, with last year’s total more or less reached by the end of September.

Organ transplant waiting list

There are more than 550 people in the Republic waiting for a transplant, according to the latest figures up to the end of September 2023. This is how it breaks down by the organ they need:

• Kidney - 502
• Liver - 12
• Heart - 2
• Lung - 28
• Pancreas - 13
• Source: Organ Donation and Transplant Ireland