I have Idiopathic Pulmonary Fibrosis, which is a condition where the healthy lung tissue is replaced by scarring. This then causes the lungs to become stiff, and it is increasingly difficult to breathe, and for oxygen to get into my bloodstream. The doctors don’t know what causes it, in fact, Idiopathic means the cause is unknown.
My IPF is aggressive, I was given 12 months to live over 2 years ago, and was referred to Willow Wood for end-of-life counselling then. Nicola, the counsellor, was brilliant, she really helped me come to terms with my condition and accept the prognosis. It is difficult, I’m in constant pain and find I’m less and less able to do the things that we all take for granted. I’ve just been given a wheelchair as I can’t walk very far. I do love to drive out to places like Etherow Park, and now with the wheelchair I’m able to get out of the car and go into the park for a bit.
The support I get from Willow Wood is amazing, I was initially given physiotherapy to help me with breathing, but the IPF is too far along for it to make much difference. It’s the same for drugs; I’m taking Pirfenidone, but that works best for people at the start of the condition, I’m too far along the road for it to help. But the support, not just of the staff and volunteers, but the other patients as well is brilliant. I come to the O2 café every Wednesday. It’s for people with lung conditions like COPD, chronic bronchitis or non-refractive asthma. I’ve made some good friends and we help each other.
I’ve really bonded with George, one of the other patients. He’s a lovely chap, he served in WWII, and was so proud to wear his medals on Remembrance Day. I treat him to a sandwich every Thursday and then we go curling at Hope Church in Denton. I’ve met so many people at Wythenshawe Hospital who have the same condition as me. They’re just stuck in the house, there doesn’t seem to be anything like Willow Wood in that area for them. But I’d say to them all, don’t shut out the world, go out and see people and don’t bottle things up, don’t be too proud to accept any help.
I’ve just had another CT Scan, and been given 9-12 months to live. I know now it’s near my time, I can feel myself shutting down. That’s what it’s like; the doctors say it’s a slow suffocation, but I’m just feeling more and more tired. Everything is such an effort. I was on the transplant list, and a while ago a match came up. There were two of us though who were matched, and when I heard the other was a 17 year-old girl, there was just no contest. She’s at the start of her life, I’ve had mine. My daughter’s expecting a baby, and I’d just like to see my grandchild, but it’s in God’s hands now.
My mum died in Willow Wood about four years ago. She was so scared of death, but the change when she came here, she was happy. Everything she asked for, she got. Willow Wood is brilliant – my hope now is to be able to die here too.