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Welcome Back
Good evening everyone,
A few years back, around 2018/2019 I believe, I joined on here and posted quite a bit so some of you who have been around a while may remember me. I joined here after reading Charlene’s incredible blog and along the way found some wonderful people online here who have all like myself been dealt the difficult blow of having to face PF in one way or another.
For me it was that my Father was diagnosed in 2015 and died in 2017 from IPF. He unfortunately deteriorated quite rapidly and at that time proffers of trial medications to help slow the onset of his disease were very much limited and a postcode lottery on the NHS. He was unable to proceed with the option of a lung transplant having had previous open heart surgery to repair a defective heart valve from a prior illness he had when he was a child. He died at just 61 years old.
Since then I did become an advocate for raising awareness of IPF and worked alongside Action for Pulmonary Fibrosis and the British Lung Foundation (now Asthma + Lung UK) to complete a research dissertation looking at the Psychological Impact of PF on patients and carers. Having fallen a bit for healthcare in general, I retrained as a Radiographer, (during a global pandemic no less!) and now work in MRI.
The toll of my grief was heavy and because of it I did take a step from raising awareness of PF. Being burnt out working in the pandemic obviously didn’t help, but now more than ever I’m getting the bug to want to help in any way I can as lung disease as a whole as well as PF is still very much not given the spotlight it deserves and that access to healthcare and improving quality of life is severely lacking. I’m so pleased to see that communities like this are still thriving, and that despite the sadness, there is a positive group of people coming together online to provide advice, support, guidance and general compassion when it can feel particularly isolating and scary of what we are facing.
At the minute I’m currently on maternity leave and looking after my now six month old son. He’s my first so it’s been an adjustment! And it is bittersweet as he sadly won’t meet his beloved Grandfather, but I will always be sure to share his memory with him so that he will feel very much a part of his life.
I’m very much looking forward to hearing and speaking with you all soon!
Best wishes
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1 Reply
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I remember reading some of your posts. I wish you the best with your next venture with helping others.
Take Care
Jeff
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