Belfast woman on how a completely misunderstood respiratory illness turned her life upside down

Geraldine Sayee was active and busy with a career she loved in global pharmaceutical sales, when in August 2020 she started to feel unwell and thought it was Covid-19 related.

She was eventually diagnosed with Bronchiectasis, a long-term condition where the airways of the lungs become widened, leading to a build-up of excess mucus that can make the lungs more vulnerable to infection.

Geraldine, who is from Belfast, now lives with the condition and is sharing her story to raise awareness of respiratory illness for World Bronchiectasis Day on July 1.

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She explained: “It started when my sister was visiting me, and she commented that my coughing and breathing were very bad and advised I should go to the doctor. I hadn’t been feeling well for a while, but I didn’t seek medical advice because I was always so healthy and had no need to follow up on anything health related until then.

“It was quite unlike me, but I visited the Out of Hours service where I tested positive for Covid-19. There wasn’t much to be done, however as I was short of breath, I was given an antibiotic. Unfortunately, this offered little respite. My cough had intensified to the point of nausea. I wasn’t eating and was unusually tired.”

Geraldine then went to see her own GP and was started on a course of stronger antibiotics and steroids. Any relief was short lived, as Geraldine continued to feel unwell and within weeks had lost her voice due to inflammation of her vocal cords.

She decided to get a second opinion through her private healthcare plan: “In January 2021 I attended an appointment with a respiratory consultant. Following several tests including a CT scan I was diagnosed with Bronchiectasis.”

She was treated with the mucolytic drug Carbocisteine, additional steroids, given a nebulizer and inhaler, and her life changed dramatically. “I was due back at work, but I just wasn’t well enough. The cough was really getting me down because I couldn’t sleep. I was both physically and mentally fatigued – when you are used to being very active and healthy, adjusting to a life-changing condition is most challenging.”

Geraldine took early retirement, struggling to manage low energy levels and a cough, which impacted her once very full social life. “I couldn’t walk far, and I was embarrassed by my coughing because Covid-19 was still around and when people heard me coughing, they would walk away or stare intently. I lost confidence when walking because I didn't know when I might become breathless. Bearing in mind that prior to the onset of Bronchiectasis, I would have walked miles every day or every other day.”

Six months after her initial diagnosis, Geraldine was referred to the respiratory multi-disciplinary team at Belfast City Hospital, where she received support including sessions with a speech therapist, who mentioned the help available from Northern Ireland Chest Heart & Stroke (NICHS).

“I called NICHS and spoke to Gemma, one of their Care Services Co-ordinators. At that time, the charity couldn’t provide home visits because of Covid-19 but Gemma was such a support. She talked me through the condition, and then I started attending meetings online during the pandemic. Eventually we were able to meet up in person and I attended the Breathing Better Education Programme.”

The NICHS team was able to support Geraldine in managing her condition, as she explains: “Previously, my Consultant had recommended that I go to Pulmonary Rehabilitation. After waiting a while for the appointment, it emerged that my referral had not been acted upon. Gemma helped me contact the Pulmonary Rehabilitation team and I found myself on the waiting list, which was such a step forward.”

Geraldine then attended NICHS’s Taking Control Self-Management Programme. “This completely lifted my spirits. It was empowering to be with people dealing with similar health issues. We developed support networks and lasting friendships. NICHS returned light to my life.”

Speaking about the impact of Bronchiectasis, Geraldine said: “I was just thrown in at the deep end. It really knocked me, for somebody who had been so confident. I've been widowed for 14 years, but I was always in control and able to manage. After my husband died, I threw myself into work. I travelled a lot and had wide and varied friendship groups, but I haven’t been able to travel for almost four years now.

“I hadn’t planned to retire before 70 because I was very active and fit. I try to present myself well. I loved my job. But all of that was taken away. Sadly, I can’t get up and do whatever I want in a day like I used to. I also have two grandsons who love running around in the forest or the park, but I can’t do that anymore. They ask me, ‘Granma, is your voice always going to be like that?’

“Before I developed this condition, they would regularly sleep over at my house, but that had to stop. They would get distressed when I started coughing because they are very afraid of something happening to me and it scares them to see me having a coughing fit. I miss them staying over terribly.

“If I’m going out with my friends now, I have to ask to go earlier in the evening. In the winter, I can’t really go out after teatime, because of the effect going out in the cold has on me. It is rather embarrassing if you succumb to a coughing fit in a restaurant, and if you’ve eaten sometimes the coughing makes you feel sick. It is very debilitating, but you wouldn't know it looking at any of us with Bronchiectasis.”

Geraldine added: “Respiratory illnesses are completely misunderstood. People don't realise the impact it has on your daily life. I can't get up and get going quickly in the mornings. I've got to take my time, do my nebulizer, take my Carbocisteine tablets, then try to expel the mucus and take my inhalers. I must perform this daily ritual just to function.

“Whereas when I was well, for work I was so active and busy. Often, I would have to take a Heathrow flight at 7am so I was up at 4am getting myself organised. I was always a very hard worker. This condition has changed my life dramatically.”

Geraldine bravely spoke about her experiences at the launch of NICHS’s Respiratory Manifesto at Stormont in September last year, urging politicians here to make changes to help those affected by respiratory conditions: “I supported NICHS’s Respiratory Manifesto because I would love to be able to shout from the rooftops about their work, to raise awareness about their services for people who need it.

“I’m just trying to help those people who have a similar illness, so they don’t feel they are on their own. Respiratory illness is becoming such an issue in Northern Ireland with air pollution, wood burning stoves, car fumes and more. I never smoked and I've spoken to people at our NICHS meetings with COPD and what strikes me is the number of people attending who have respiratory illness and yet have never smoked. It can happen to anyone.”

“In my experience, you are very much left on your own by the system after diagnosis. I get six monthly appointments to follow up at the hospital. Unless I am admitted to hospital for a flare up, there is nothing else they can really do. NICHS’s services are like a stepping stone or a bridge between primary and secondary care.

“Respiratory illnesses are looked upon as something that the hospital deals with when you reach a certain threshold. NICHS is there to help you with managing day to day and proactively preventing flare ups. This experience has reinforced my long-held belief that with every cloud there is a silver lining.

“For me that shimmering thread is NICHS! I would like to thank Gemma and all at NICHS. Without their support my cloud would be so much heavier and my life, potentially a lot darker. They are wonderful.”

Ursula Ferguson, Director of Care Services at Northern Ireland Chest Heart & Stroke, added: “Over 174,000 here are living with respiratory conditions and the impacts can be life changing. As well as the negative impact on physical wellbeing, respiratory illnesses can reduce independence, confidence, and happiness. They can also affect relationships, take away jobs and render some families isolated within their own homes-but NICHS is here to help with expert care and support.”

“The help available from our Care Services team is extensive and includes our Family Support service, and Breathing Better Education Programme, which is designed to help participants learn more about their health and how they can manage their condition more positively. We also run Breathing Better Wellness Sessions which focus on health promotion, physical exercise and emotional wellbeing. These sessions also provide vital peer support and reduce social isolation.

“Our team works across Northern Ireland with people of all ages affected by respiratory conditions, alongside their families and carers. They are dedicated to supporting people in adjusting to life with a respiratory illness, helping them to enjoy life to the full, and improve their confidence, independence, and overall quality of life.”

If you have been affected by respiratory illness and need support visit here for further information.

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