‘I need a double lung transplant – not being able to breathe is the scariest thing in the world’

She suffers from idiopathic pulmonary fibrosis, a condition that causes the lungs to become scarred and breathing increasingly difficult.

A Northern Ireland mum who is waiting on a double lung transplant at 48 years old has said “not being able to breathe is the scariest thing in the world”.

Mary McGrath from Newtownabbey suffers from idiopathic pulmonary fibrosis, a health condition that causes the lungs to become scarred and breathing increasingly difficult. She is bravely sharing her story to raise awareness of chest conditions in the hope it can help give courage to others.

Mary was in her 20s and studying at university to become a teacher when she started to get very breathless while walking upstairs.

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She recalled: “I felt really unfit, although I wasn’t, so I went to the doctor who checked me over but couldn’t really find much wrong with me. This continued over the next couple of years and after more investigations I was diagnosed with having hypersensitive pneumonitis, which is an immune response to something you breathe in which results in inflammation of the lung tissue.

“It was idiopathic however which meant they couldn’t define the cause of my condition. It has progressed to pulmonary fibrosis.

“Being diagnosed with this awful lung condition was hard to accept because I was very young, I had two young children, I hadn’t graduated university yet, and they couldn’t pinpoint why I had it. I was prescribed a cocktail of drugs, and I took high doses of steroids from 2007 on.

“Meanwhile, I finished my last year at university, graduated and got a post as a primary school teacher. After a few years, my health started to deteriorate. I was told I needed a double lung transplant at that stage to save my life because my oxygen levels were so low, but I wasn’t emotionally ready for that. The idea of a transplant knocked me for six and I just couldn’t get to grips with it.”

Mary says she begged the doctors for an alternative: “The only other option was to try a heavy dose of steroids which thankfully started to work and cleared some of the inflammation in my lungs. Being on a high dose of steroids isn’t pleasant however because it makes you feel very empty, so you eat a lot more and put on a lot of weight.

“My face also looked very distorted, but I was thankful I was still alive and didn’t have to have the transplant of which I was so terrified.”

Down through the years, Mary says she was off and on steroids and also on a chemotherapy drug as treatment: “I never really had any time off work; I just kept on going and wouldn’t lie down to my condition even though I was breathless and had oxygen at home.

“Once the pandemic started however, I got a letter to shield and over the next two years my condition really started to impact me because the medication I was on had stopped working and I was starting to feel more breathless, feeling generally heavy in my body, not having the energy levels I used to, and I knew something wasn’t right.

“In 2022 I was referred to a new consultant and respiratory nursing team, and they have been unbelievable. They did a revamp of my medication as steroids weren’t working for me anymore and other medication options that would be suitable for a lot of people with my condition weren’t for me, so the team tried a few different things over several months and I’m now what they class as stable again.”

Talking about the impact of her condition Mary added: “Not being able to breathe is the scariest thing in the world, it really is so frightening. I started on oxygen about three years ago and when I went to the clinic they couldn’t believe I was moving around, never mind going to work. Getting on oxygen has really helped me; it helps keeps me independent.

“If I’m moving around a lot, I need to be on my oxygen. If I don’t, I get out of breath really quickly and I find it hard to recover when that happens. Before, I would have been able to do a lot of panting and get my oxygen levels back up, but I’m not able to do that so much now. That’s part of the deterioration of my condition.

“I’m living a very different life to most 48-year-olds. I get up very early in the morning to get a shower before work as it takes so much out of me, and I have to have an oxygen tank outside the door. I have to sit down afterwards and rest. I’m sore and achy and it almost feels like you have a permanent flu.

“The newer medication I’ve been given is good because I don’t have the constant cough anymore. Beforehand I couldn’t hold a conversation without coughing constantly which made me dizzy and sometimes I’d be sick I was coughing so much.

“Things like doing the washing, hoovering, making a bed- a lot of people, 48 years old or even older, will find that quite normal, but that’s not normal for me. I can’t do things like that. If I do, there is a lot of stress and sometimes it becomes so overwhelming I end up crying.

“With a condition like mine you have to find alternatives to the ways you used to do things and maybe just ask for help, and realise that’s ok. I’ve also completed pulmonary rehab twice which was helpful, and I learnt a lot which I’ve applied to creating my own strategies to deal with my condition.

“It’s so hard to explain what it feels like when you can’t breathe and it’s there all the time. I do a lot of psychology courses online and that has really helped me. I also don’t let my condition define me. For example, I work fulltime, I achieved my Master’s degree two years ago, and I’m a volunteer chair at a preschool. I want to live my life with my husband Jim who has become my carer, and Michael and Daniel my sons.

“I want to see my children living their lives, see my five grandsons grow up and that helps spur me on. I’m not saying I don’t have down days, I do, but mostly I’m upbeat. I love my job, and I love the children that I teach. It’s hard and I’m exhausted some days but I’m not going to sit at home and let this get the better of me. I can’t do that. I’m not built like that and keeping busy helps me cope.”

Long term however Mary says she will need to have a transplant: “After transplant, I will be on anti-rejection medications which will bring some challenges, and I will have to be monitored to make sure my condition is manged well. Sometimes I feel like it will be getting rid of one problem to get another, but the positive is I’m a really good candidate for transplant because I don’t have any other health conditions.

“It does worry me, but I keep that on the back burner until the day actually comes as I can’t control things. I also see a clinical psychologist to help prepare for the transplant. Something that has stuck with me over the years was when someone told me to ‘just live your life’. I can’t always be thinking about the transplant as I don’t know when it will happen so I just have to live my life the best I can until it actually happens. Otherwise, I wouldn’t be able to cope.”

A place Mary says she has found great support is Northern Ireland Chest Heart & Stroke (NICHS) after being referred to NICHS by one of her respiratory nurses.

She explained: “One of the Care Services Coordinators, Darren, came to see me at home and took me through the charity’s Family Support Service. He explained about the different services and programmes the charity could offer me. Darren was brilliant, and I loved that he had so much knowledge about my condition.

“He was interested in things like how I was getting on at work, if I was able to get out for some exercise and so on and it was a different type of conversation to what I normally have about my condition. It was really nice and reassured me. I have had my condition for 20 years but getting support from NICHS over the past few years has been fantastic for me.

“Before I felt like I was just left to linger, especially with trying to hold down a fulltime job with my condition. NICHS referred me to Ulster Supported Employment LTD, who have been great at helping me get what I need in place at work, like an electric desk and a special chair. They then put me in touch with Access To Work (NI) who organised for a Support Assistant to support me at work which was a massive help, especially with the physical aspects of my job.

“My Coordinator Darren checks in with me regularly and I like that. It’s like someone putting an arm around you. I’ve had a lot of support over recent years which I never got before. I felt alone and if you feel alone that can make your condition deteriorate so I would urge anyone with a respiratory condition to get in touch with the charity in case they can help them like they have helped me.”

Mary is a NICHS Hope Hero and features on artwork in respiratory wards in Northern Ireland hospitals: “I want to raise awareness of respiratory conditions and highlight they don’t only affect older people. I also want to let people know there is help and support out there. I wish someone had told me about NICHS a lot earlier as I would have got a lot more support over the years.

“Getting referred to Northern Ireland Chest Heart & Stroke has just been fantastic for me so if this helps other people access that support, I will be delighted. Everybody’s life has things going on and remembering that keeps me very strong and focused. I’m not like that every day, but 90% of the time I am. I’m strong minded and I won’t let this beat me.

“For now, it’s all about living life- going to concerts, going out for lunch, enjoying family time. My motto is ‘live life’, because that’s what it’s there for. Many people don’t get to do that, and I know my situation isn’t perfect but I’m still here and I’m going to live my life.”