Tina remembers her husband Ian as a fit, active and strong man who loved football and dancing. They enjoyed a good social life and many lovely holidays. Sadly, Ian died in October 2022 from pulmonary fibrosis, a disease that had claimed the life of his sister 18 months earlier and was a contributory factor to the death of his father too.
PF - What's that?
It was the change in the shape of Ian’s fingertips that first prompted Tina to encourage her husband to seek medical advice. Clubbed fingers are often a symptom of a disease relating to the heart or lungs. Ian also experienced some breathlessness during activity and in early 2020 was prescribed antibiotics for a chest infection. When he didn’t fully recover, he returned to his GP, who referred him to a respiratory specialist at the Queen Elizabeth Hospital in Birmingham.
Tina explains
Having a disease that is not widely know is scary. Trying to explain what it is was difficult
Diagnosis and treatment during the pandemic
As the Covid-19 pandemic was just starting to have a real impact in the Spring of 2020, Ian’s relationship with his respiratory specialist was all by phone and without a single face-to-face consultation. After various lung function tests and other assessments, Ian was diagnosed with emphysema and pulmonary fibrosis. He was eventually prescribed Nintedanib and managed well on this with limited side effects. Ian, only in his early 60s, asked to be considered for a lung transplant and, after a four-day assessment at the QE Hospital in September 2021, was approved in principle, but only once his lung function had declined sufficiently to meet the criteria.
Ian was very motivated to get himself in the best possible health to face eventual surgery. He exercised regularly and lost weight but in May 2022 got a chest infection which resulted in a hospital admission for nine days and a diagnosis of pneumonia. Many further spells in hospital followed and an eventual reliance on oxygen 24 hours a day.
Caring for Ian
The various lockdowns throughout 2020 and 2021 resulted in Ian and Tina having to isolate in line with the rest of the country. Being extremely vulnerable, Ian was at significant risk but the family, including his daughter, son their partners and four grandchildren, enjoyed some good times and made memories despite the difficulties.
Tina became acutely aware that the house was not suitable for her husband to manage well as his health declined. They made a few adaptions but struggled to get everything they needed due to a long delay in having their care needs assessed by an occupational therapist, made worse by the pandemic.
To add a further challenge, Tina herself was diagnosed with breast cancer in 2021 and had to endure surgery, chemotherapy and radiotherapy, all whilst continuing her caring role.
Ian was admitted to hospital again in October 2022 with what was first identified as a bacterial infection but later transpired was a viral infection, that could not be treated. He sadly died aged 64.
Fundraising and raising money
Not only did Ian himself take on a fundraising run whilst he was still able, his daughter, Faye, and her friends got involved in raising money for APF by taking part in the charity’s Go the Distance challenge in 2021.
The family’s continued wish to support research into finding a cure for PF motivated them to collect donations in Ian’s memory at his funeral and they raised an amazing £600.
Thanks to the ongoing support of our community, APF continues to offer support, campaign, educate to raise awareness and finance research.