I’m new here. Hello everyone.
WOW! It’s 3am and as far as I’m concerned I’ve overslept. I get 2 hours a night now - I must be doing something right.
It’s now time for me to take on the roll of a cat burglar and quietly get me, and tons of stuff from the bedroom to downstairs without waking the family.
I have to admit, I’ve never excelled too much at anything in my life - but tip-toeing, muffled coughing into my elbow, the art of silent breathing - plus getting a portable oxygen cylinder, an oxygen line, with some much tubing I could let someone in Calais use it - Having a panic attack on route - all of these I have mastered quite well.
I suffer with IPF or now they tell me it could be NSIP. (I wish they'd make their minds up) Regardless, they say it’s the same-ish thing-ish.
I won’t bore you but the past 3/4years have been more than a roller coaster ride. It was just luck that a casual nurse, who thought I had everything from asthma to piles decided to send me for an X-Ray. Scarring was found and my doctor, who called on a Friday with the news that it could possibly be IPF. Thanks Doc - you have a nice weekend too!!!
I didn’t tell anyone close, as I wasn’t quite sure what IPF was. I typed it into Google, with spaces. It came up with International Personal Finance - International Powerlifting Federation and British Lung Foundation. I was hoping for the powerlifting site as lot of people have commented on my squats, bench presses & deadlifting over the years!
But ‘No’ - I opened up the BLF website and to be honest was quite shocked to read what my doctor thought I might have. It was unexpected and not easy to digest. Mind you, if she was right, I had now joined an exclusive club with only 6,000 new members a year and no subs to pay.
It’s a long story, that I’m sure you’ve heard many times, but the next years were spent visiting the experts, CT scans, test after test, referrals, a recent 12 day stay in hospital, as I’d caught pneumonia, and all that as my condition got worse and no help had been offered.
It was only after my long stay with the NHS that someone really took note of my IPF and a few things started to happen.
Two weeks ago I got an unexpected call from the transplant team at Withenshaw Hospital, they'd had a cancellation and I had the chance to step in. Interesting meet as no-one introduced themselves in the room!! - So to be honest, I don’t know who I’ve seen. The receptionist was called Erica and she said that - they (whoever they are) will be in touch.
I joke a lot - as I’m so nervous it’s my only real medicine at the moment. I’m actually having a hell of a time having to turn down work, avoid good friends (for a bit) no sleep, panic attacks, confusion the lot!! But onwards and upwards.
In a nutshell - I’m all fingers crossed they offer me to opportunity to take part in trails for a possible transplant but the waiting, as I’m sure you all know, for everything from IPF, NSIP or what ever you have is the real killer.
Now it’s time for me to bed down on the sofa in the lounge and listen to my two staffies heavy breathing whilst keeping an eye on the cat whose been clawing our curtains so much they look like designer nets.
Good to be here. X