Anna-Marie shares her aunty Jenny's journey with IPF

My aunty Jenny was a kind and caring soul. A person who would always go above and beyond to ensure the needs of others were met before her own. A naturally born carer.

She began her caring journey as a childminder where she welcomed children (including myself) into her home and cared for them whilst Mums and Dads were working. We had the best time alongside her own two children and many a memory was created. Sadly, in 1997 Aunty Jenny was diagnosed with breast cancer which the fighter in her went on to beat! Once she was fit and well, Aunty Jenny then became a carer for the elderly, more specifically care within dementia. This is where Aunty Jenny’s kindness and compassion for others really shone through. She studied, gained some qualifications and the families of those she cared for had nothing but kind words and high praise for Aunty Jenny.

Jenny on a boa trip whilst visiting her son in Australia
Jenny on a boat trip whilst visiting her son in Australia

Sadly, in December 2020 Aunty Jenny contracted COVID-19 whilst working and this is really where her story with Idiopathic Pulmonary Fibrosis (IPF) began. Aunty Jenny recovered the best she could from Covid but continued to have persistent coughs and chest infections. Rounds and rounds of antibiotics and inhalers were given to her but nothing seemed to cure the breathlessness she was experiencing. But, in true Aunty Jenny nature, she continued to put others first, caring for the residents within the home she worked at. Ensuring they had a friendly face and consistency to their routine which is so important for someone living with dementia.

In October 2021 Aunty Jenny said to me:

I think it’s time I retired, I’m getting so breathless now and finding work hard.

She was 71. She had already reduced her hours down, but this hadn’t made much difference to her well-being. She was now under a consultant and tests were being carried out, we were of the understanding that she had severe asthma.

On Christmas Day 2021 Aunty Jenny was taken poorly, her oxygen levels were dropping dramatically low, and she was taken into hospital. Upon later speaking with her consultant, he said “I honestly thought we were going to lose her that day” but in Aunty Jenny’s true style she continued to fight. After some tests were conducted, we were given the news that Aunty Jenny had pulmonary fibrosis, a condition none of us knew anything about really. Sadly, her case was already severely advanced. She remained in hospital undergoing some courses of a type of chemotherapy which the doctors were hoping would slow the progression of the disease. She remained in hospital until 28 March 2022. The fast progression of the disease had resulted in Aunty Jenny really becoming a shell of who we knew. She needed constant oxygen of a high level; she lost weight and became unable to care for herself. The tables had turned, now it was Aunty Jenny who needed the care. All she wanted to do was to come home and be cared for in her own home, a home she had raised her children Natasha and Gavin in, a home her grandchildren adored, a home we all had so many fond memories of.

Jenny during a stay in hospital
Jenny during a stay in hospital

Finally, on Monday 28 March we welcomed her back into her home. Thanks to the help of Occupational Therapy, we had everything we needed to allow Aunty Jenny to be cared for in her own home where she wanted to be. Unfortunately, Aunty Jenny's condition began to decline rather rapidly and after only a week at home she passed away peacefully on Tuesday 5 April with all of us around her. She got to leave in the way she wanted - in her home with all those who loved her most and who she loved most there by her side. She was 72. We miss her so very much, after such quick progression of the disease it left us very little time to deal with her diagnosis mentally and Aunty Jenny never got to enjoy the retirement she so truly deserved.

In February 2022 I raised £285 for Action for Pulmonary Fibrosis (APF) and I will continue to raise money in Aunty Jenny’s memory, for a disease I truly feel is not known about enough. On 1 February this year, I started walking 100 miles over 43 days to raise money and awareness. I’ve chosen 43 days as I will turn 43 on 20 February and this will be my first birthday without Aunty Jenny.

Aunty Jenny was truly one of life’s wonderful souls. A person who genuinely cared for others, a natural at her job and loved by all those who had the pleasure of her presence. If telling her story could help just one person, who may have symptoms that have been put down to “a chest Infection” or “asthma”, get the help they need to live a life with PF and not have to suffer the way my Aunty did, then my work is done.

Thank you to APF for raising awareness and providing information and support for families affected by this disease.

Do you need advice or information about living with pulmonary fibrosis? Find out more via our website or contact our support line.