'It’s the biggest transplant you can get': Organ donors saved young mum's life

To mark Organ Donation Week, quadruple transplant recipient Sinead Lowndes talks about how she beat the odds and, with the help of donors, is now watching her daughter grow up

Fri, 02 Apr, 2021 - 15:22

Martha Brennan

NO gift will ever be greater than life for 31-year-old Dubliner Sinead Lowndes, one of two people in Ireland to receive a multi-disciplinary organ transplant. Two years after her quadruple transplant surgery, the young mum is telling her story to help raise awareness.

“In late 2018, I was diagnosed with a rare liver condition, out of nowhere. My stomach had swelled and I went to the doctor, thinking I had wind. About a week later, they told me I had Budd-Chiari and that I’d need to get a liver transplant,” says Sinead, who was 29 at the time.

“It was just a sequence of bad news after that. I was three weeks out to getting married and my little girl, Paige, was only 11-months-old.”

Along with the diagnosis of Budd-Chiari, a condition that affects one in a million people, Sinead was also told she had a blood condition that causes clots and would further complicate her health.

“I thought I was completely healthy,” Sinead says. “Everybody thought I had been on a diet for my wedding and I had noticed I was losing weight, but I had a newborn baby. I wasn’t sleeping. I just thought it was normal.”

“On the day I was diagnosed, they couldn’t believe I was the person sitting in front of them. They expected me to be in ICU, with the way my bloods looked. But I felt fine, apart from having a big belly and feeling a bit rundown.”

One in a million

The doctors warned Sinead that her health would deteriorate within a few days, but she went home and married Stuart at the start of 2019, as planned. However, things quickly began to change.

Sinead Lowndes on her wedding day with husband Stuart and daughter Paige.

“Two weeks after the wedding, I deteriorated and they found a clot in my gut,” Sinead says. “I was in St Vincent’s Hospital, at the time, and they’re fantastic, but nowhere in Ireland has the expertise to do small bowel transplants. So they put me forward to go to Addenbrooke’s Hospital, in Cambridge; they had never sent anyone there before. I was accepted and airlifted there in April.”

While Sinead felt lucky to be able to travel to England for her surgery, she was “devastated” to have to move there for a year. Stuart only had a few days to pack up their new home, in Dublin, and Sinead had to give up her job, as an insurance broker. Stuart also took a break from his job in insurance and Sinead’s mother, Norma, also gave up hers to accompany the young family to Cambridge.

“Mam was amazing,” Sinead says. “There was no way she wasn’t going. At times, we actually had to make her sleep. She’d be my bedside until 12 o’clock at night and wouldn’t leave until I fell asleep. We were never without family or friends. I don’t think we went more than two days without someone flying over. Everyone was just amazing.”

Sinead’s friends also set up a GoFundMe page, which raised nearly €100k for expenses. “Cambridge is one of the most expensive places in the UK,” Sinead says. “We weren’t working and we didn’t have time to think about renting our house out. The GoFundMe was just amazing. I was so lucky. Without it, we wouldn’t have been able to go.”

‘I had to get home’

After the move, Sinead’s condition further deteriorated and she spent seven weeks in hospital, before receiving a liver, pancreas, small bowel, and colon transplant in June.

“It’s the biggest transplant you can get,” she says. “There are very few of us in the world. I had a really rocky recovery. I ended up needing an abdominal-wall transplant and my spleen removed. I got pneumonia and I was on a ventilator for seven weeks; three of them were in a coma. I woke up and I knew straight away where I was, but I had to have a tracheotomy, so I couldn’t talk. When I was finally lucid, I have to say, it was horrendous.”

After spending nearly three months in ICU, Sinead left the hospital in September. “I just had to do everything I could to get back home. I got back eating and walking and learned to speak again. We lived next to the hospital and I was still in there most days after I left, but, in my mind, I was home.”

The following February, the family moved back to Ireland, just in time for the pandemic to hit. She and Stuart, who is working remotely, have been cocooning since.

“We haven’t gone to a shop, we haven’t gone anywhere,” Sinead says. “It was just so raw when Covid came. I was on a ventilator eight months beforehand. So, we weren’t taking any chances.”

“We had planned to do loads, like go to Dubai; we had just been to Disneyland after I was released,” Sinead says. “But we’re after making up for the time we lost as a family. I, essentially, missed a year of Paige’s childhood. I didn’t see her for six weeks at one stage and it was so hard to see her from a hospital bed. But I always say that I was lucky because there are some people who are on the transplant list for years. There are 600 people on it in Ireland and only 190 received transplants last year.”

Giving back

While Sinead says it’s been difficult not seeing her family, because of Covid-19 restrictions, she also feels lucky that her time in hospital was pre-pandemic.

Sinead Lowndes with husband Stuart and daughter Paige.

“When I was in St Vincent’s, in 2019, they used to call my room the party room, because there were people there all the time,” Sinead says.

“I was there in November last year for a week and it was like a completely different place. I don’t even know if I would get my transplant if it was 2020. I always say that there are people who are worse off.”

Though she hasn’t been able to return to work, she is in “relatively good health”, besides some occasional bleeding.

She has started running again and set up her own fundraiser for St Vincent’s Hospital, in honour of Organ Donation Week, which ends tomorrow.

“There are nurses and doctors out there that are forever part of my story,” Sinead says. “I wanted to give back to them. So, I said I’d attempt my first 5km this week and ask people to join me virtually and donate. Within 24 hours, there was over €1,000 raised.”

Sinead also wants to honour her donors and their families. “I literally think about them every day, because if it wasn’t for them, I wouldn’t be able to see Paige grow up.

“I wrote to the family of my organ donor, but they might never read it. I know one nurse who lost her son nine years ago and she got a letter from one of his organ recipients and she still isn’t ready to read it. I would never expect a reply, but I’m glad they might know how grateful I am.”