It started 3 years ago with noticing I couldn't expand my lungs fully, it was as if my lungs were hitting my rib cage before being fully expanded but there was no breathlessness, the next stage was breathlessness and fevers, the next stage was pneumonia and hospitalisation, the next stage was ARDS, sadation and full life support, the next stage was DVTs in the legs, the next stage was survival for the next 6 months, next I was treated with chemotherapy for RA in the lungs and now were living with IPF and on the transplant list.
Yes you could say I was unlucky to go through all this but I consider myself to be the 'LUCKIEST' person around to still be here enjoying life, all be it at a slower pace. Sometimes life can throw some real nasty stuff at you but if you hang in there long enough you can come back and smell the roses again, you really can!!!
Lucky Tony
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dall05
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Hi Tony, There''s me thinking you are standing in a Bunker without sand in it till I scrolled down, Every time I feel down you come out with a inspirational post which makes me more determined to keep fighting on, Matt
It was a hell of an experience BC and it took an army of people to pull me through but apart from 1 blip I managed to keep smiling. Its amazing what smile power can do.
Not lucky just an amazing person. When I feel fed up with my limitations I see this photo in my mind and it spurs me on to walk that little extra try that little harder. Thank you.
Its great that my posts can inspire others to walk with me on the road to a better life. I'll bounce off you now and look what you have done, I'll have to walk that extra mile tomorrow and I was planning a restful day. Ha Ha
I thank you as well you are so inspirational, when I feel I can't be bothered to do a little exercise, I think of you and count my blessings. I wish you everything you wish for yourself.
Hi polly, we all know exercise is the way to a better life. I was told early on that those who could get back and walk again sometimes sit in a wheel chair and fade away. That wasn't for me!!!
I have been diagnosed recently with restrictive lung disease and the feeling your ribs is what I have had since my 2008 ICU stay. I am with you, I do get down sometimes but PMA has to be the best way forward.
Hi Oc, When I think back now about that odd feeling when my lungs wouldn't expand fully but there was no pain or breathlessness I had no idea there was something seriously wrong. It was only when the breathlessness came that I went to the GP and everything kicked off. It seems as though the permanent damage to my lungs was caused by ARDS and my long stay on ICU but they saved my life so I'm certainly not about to complain.
There's no doubt Oc staying positive is the way forward for us all.
Ok Miracle man, what made them decide it was IPF? Not that it makes much difference what they call it, you have still put in all the hard work to walk, play tennis and absolutely anything else you want to do. In 2 weeks time I will have been out of hosi for a year. I too consider myself lucky.
Keep on giving me something to work towards please xxxx
Hi DD, I'm sorry I have taken so long to get back to you but life got a little hectic for a while so I've been reading and not writing much.
It was at my last consultants meeting that the head respiratory nurse told me that at the moment I was now unknown cause of PF. In other words IPF and my transplant consultant has also mentioned that the damage to my lungs may have been caused by my long stay on ICU. They all seem to be expecting my lungs to be deteriorating and their not. OK there not getting any better but the good thing is their holding their own. They seem to be thinking that any improvement in my overall fitness is down to me losing weight and generally getting stronger from exercise and time. Its 3 years since I left hospital and the biggest improvements have come in the last 8 months so you'll have to wait a little longer to drop your oxygen intake but hopefully this will come soon.
There is no doubt that we are both very very lucky to have this second chance but you'll have to be patient as recovery is a long slow process it seems, you will improve in time I know you will. Are you going to the IPF meet the experts meeting at Gatwick?, The one at Taunton was good and informative. Ask them to drop a large oxygen cylinder in for you so that you only need to carry a supply for the journey.
Tony xxxx work hard on your exercise and if your carrying any extra lbs like I was, it pays to lose it.
I had a SLR Nikon - still have it, but as it uses film rolls, I've switched to digital too! Canon 500D. Bronchiectasis stops me to go out when it's cold!
My Christmas present to myself has been three woollen jumpers!
Tony, thank you for sharing your upbeat outlook, courage and sense of humour. Wishing you all the best.
sometimes you have to ride your luck, I've already had my 1 in a million lottery pay out and I hope I'm not too greedy if I say I may need just a little more if the transplant comes along.
Its all about positive thinking jp, Tomorrow I'll think about a lie in for a few seconds as it is an easy option but will no doubt still have to get up and attack the day as usual
It seems as though there is no piece for the wicked.
I tell you what King, I'll hire a rickshaw and pedal us to the top eh' It might be best to have a motorised one at the moment though. I'm a mechanic so I could fit one out with a V8 chevy engine, that should do the trick.
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In the midst of chaos, I'm here to wish you all a very happy Christmas!
What A Birthday I Had !
Very scared
so worried I have PF
