New possibilities for Longford’s Jillian McNulty

Becoming an organ donor is a selfless act that could save the lives of up to eight people. That’s the message Cystic Fibrosis activist, Jillian McNulty, is putting out there after she herself got that life changing call.

The Longford woman has been given a new lease of life this summer following a long-awaited kidney transplant and, though she admits her body is “a bit battered”, overall she’s feeling “absolutely fantastic”.

“The world is my oyster,” she said, as she enjoyed a cup of tea – her third hot beverage of the day, she excitedly noted – in the outdoor seating area of a Longford town café.

Jillian is the first patient with Cystic Fibrosis to receive a kidney transplant while still having her own lungs, so she’s being carefully monitored while she embarks on the road to recovery.

“We’re hoping it’ll go well now I’m on Kaftrio. Please god it will go well. They haven’t put a number or anything, we’re just hoping for the best. I’m on Kaftrio and I have a kidney, so hopefully I’ll start thriving once I recover. It’ll take a couple of months but yeah – life unlimited, hopefully,” she said.

Earlier this summer, Jillian’s lung function – thanks to that transformational drug, Kaftrio – hit an incredible 42 per cent. That’s the highest it’s been in about five years, she admits.

“We’re hoping now that I have my kidney and once I’ve recovered that it’ll go up a little bit more. Even if I can get up to 50 per cent I’ll be really happy because it’ll push me further and further away from lung transplant,” she said.

‘Horrendous’ Dialysis

For the past three years, Jillian has been on dialysis three times a week, which meant an early start, the journey to Dublin, the time on dialysis and the journey home, not to mention the recovery afterwards – “literally 12 or 13 hour days”.

“Being on the machine was horrendous the last few months. Most days I’d end up screaming with severe cramps. My blood pressure would drop sometimes as low as 70/50 and I could feel the life draining out of me. It was horrendous,” Jillian recalled.

“And I’d be sweating. They’d have to walk me out to the car. It had just gotten to the stage where it was really starting to get to me because I was two years on hemo. And it was really, really tough. I wouldn’t wish it on anyone.

“The fluid restrictions, the diet restrictions – it’s horrendous. It was actually horrendous. I always tried to put out the positive side but I wouldn’t wish it on anyone. It’s a horrible existence because you are just literally existing,” she added.

“Your dialysis days are gone because you have no energy and then the days that you don’t have dialysis, you’re starting to retain fluid. Your creatinine is climbing, your urea is climbing, your potassium phosphate is climbing so you just feel sick the whole time. It wasn’t nice.”

Jillian hadn’t drank a bottle of water in four years. She could have a litre of fluid per day, meaning she had to avoid a large number of foods, including soups, jelly, stew – she even had to avoid fruit and vegetables because of their high potassium content.

“That was the hardest because I was constantly thirsty. You know when you’re really, really thirsty and you need a drink? That was me constantly,” she said.

“And then the food restrictions, oh my god. No fruit and veg; you weren’t supposed to have potatoes or chips but I’d have a small potato. You had to limit your protein, you had to limit everything – no chocolate. It’s horrendous. It’s really hard.

“The odd time I did break out and have the odd fry. But actually, in the end, it wasn’t worth it because, even if I had a sausage and a rasher, I’d be sick for days. No red meat. It was horrible – horrible. Being on the machine itself was tough but the actual food and diet restrictions are torture. It really is torture.

Back on fluids

Things changed for Jillian almost immediately after her kidney transplant. She started eating properly again. She started drinking two litres of water a day – as well as enjoying high-water content foods.

“Today I’ve had two cups of coffee and a cup of tea already. I’m having two bottles of water a day. I can eat. I have a few dietary restrictions. I’m not allowed grapefruit, which is fine – I don’t like it anyway. Goat’s cheese I’m not allowed. I’m not allowed anything unpasteurised.

“I’m not allowed to eat a salad that’s been out or from a deli because of bacteria. You don’t know if it’s prepared properly or if it’s been cleaned properly or if there’s people coughing on them. So I can live without that. I’m not allowed any pepperoni or salamis, which I don’t eat anyway but apart from that I’m allowed to have everything I like.

“I had five roast potatoes with roast chicken the other day and then I felt sick because I ate too much. It’s mad. Even in the hospital I had chicken curry, a bowl of soup, crackers and cheese and a yoghurt.’ I was actually starving. Because if I was eating a potato, it was only half a potato. I wasn’t allowed veg or a half portion of meat. So my stomach was really small.

“Now I keep forgetting and I’m wolfing down the food and then it’s like ‘oof’ for a while until my stomach expands. But it’s amazing. I can eat what I want and drink. I was up last night at about one o’clock, sitting on the bed, eating cheetos and a bottle of water thinking ‘oh my god, this is great’,” she laughed.

“I’ve never felt so hydrated in all my life. It sounds silly but I can actually drink it. And there’s empty water bottles everywhere and I’m like ‘oh my god, I drank all that’. I’ll never take that for granted.”

Another thing she’ll never take for granted, she added, giving a ‘TMI’ warning, is going to the toilet – something she couldn’t do properly while on dialysis for three years.

“I was only passing 100ml a day. So I could go first thing in the morning and I wouldn’t go again until last thing at night, which is why all the fluid built up. But straight after surgery, the first day I lost a litre. And the first time I actually went to the toilet properly when the catheter was taken out, I was screaming in the bathroom because it just wouldn’t stop coming,” she laughed.

“It sounds really bizarre. It’s awareness, people don’t understand. Everyone takes going to the toilet for granted.”

Garda Escort

Jillian has been raising awareness for organ donation for years, encouraging people to sign up to become an organ donor – all while she herself waited in hope for that lifesaving call.

Earlier this summer, she spent six weeks in hospital and was, for a time, taken off that transplant list but she was relisted and, to her utter delight, received the call the following day, while she was taking a much-needed break in Enniscrone, Co Sligo.

“It was such a panic getting back,” she said, recalling the major traffic tailbacks, disgruntled motorists and other obstacles along the way. But it was Longford Gardaí who pulled through for her, getting her to the hospital in time for her transplant.

“I rang a sergeant I know really well, Sgt Gerry Newton, and told him I just got the call for a kidney and I needed to get to Dublin by five o’clock and he said ‘leave it with me, Jill’ and then he rang me back and told me a guard would be waiting for me when I got back to Longford,” said Jillian.

“Garda Aidan Lenehan was waiting for us when we got there and he escorted us the whole way. That was epic.  We would never have gotten there on time without them. If it wasn’t for the Longford Gardaí, we wouldn’t have made it. We got there from Longford in an hour.”

‘Precious Donor’

And, while the Longford Gardaí may have gotten her there on time, her journey to hospital that day would not have happened without a life-changing decision, made by strangers at a time of grief and heartbreak – the family of who Jillian repeatedly refers to as her “precious donor”.

“The family are so incredibly selfless,” she said, getting emotional as she thought of the people who changed her life.

“I can’t actually get my head around the fact that they were going through the worst moment of their lives, losing their loved one and they decided to save my life. I’m trying not to think about it because there is guilt. But I’m just so incredibly grateful to them for my life.

“Obviously I will carry that donor everywhere with me. And I intend to do a fundraiser in honour of them next year because I think it’s important to remember them. There is a family somewhere that’s heartbroken while it’s the happiest moment of my life. It’s kind of bittersweet. But I’ll never forget them. And I’ll always be truly grateful.

“Their loved one will live on in me. I’d love to know the family so if there was anything I could do for their loved one, I would… but I don’t think that’ll ever happen so I’ll just do what I can.”

The message Jillian is still putting out there, now more than ever, is the importance of becoming an organ donor and the new life such a selfless act can provide for others.

“I want people to sign up to become an organ donor. It’s so important because one person can save eight lives and it’s really important that people talk about organ donation,” she said.

“And I really think, instead of an opt-in, there should be an opt-out. Opt-in should be automatic. That’s something that, in time, I will start on. Because there’s such a lack of donors in Ireland and a lack of facilities as well. Obviously there’s only so many that they can do.

“But I’m hoping that people who read my story will see what I’ve gone from – I’ve gone from the brink, with my life on hold, to suddenly being able to eat and drink what I want. After recovery, after two or three months, god knows what I’ll be doing.

“I can start travelling next year. I’m allowed to fly after six months. I’m going to go to London, Iceland, Boston, New York. I have a whole new lease of life. It’s incredible. If people could see my story and maybe sign up – even if it only means one person becomes an organ donor, I just urge them to do it.  Because you don’t need your organs when you die. There’s no point in them going to waste.”

Apply for an Organ Donor Card online at www.ika.ie, free text the word ‘Donor’ to 50050 or Lo-call 1890 543 639.

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Written by Jessica Thompson