5 years ago in November I finally left hospital after a 4 month vacation to what might be described as going to hell and back.
I arrived home by ambulance with a wheel chair and walking stick, the house had been altered so I was able to live downstairs, my bed was now in the dinning room, a special high chair had been borrowed from an auntie so I could get out of it once sat down, the inward opening door had been removed from the down stairs toilet and a curtain hung in its place in case I collapsed against the door and was trapped inside, oxygen was set up, there was a perching stool at the sink for washing down as the bath/shower was upstairs and impossible for me to get to.
While my wife went to work nurses had been organised to come and sort out my breakfast, help get me dressed and washed for the day and a key safe was fixed outside so they could get in.
I had a button hanging around my neck so if I fell I could press it and get help.
As luck had it (NOT) this was going to be one of the coldest winters for many years and looking out from my prison on the side of the Malverns everything was white with frost for what seemed like weeks on end so any thoughts of venturing outside were soon forgotten and anyway my consultant had told me that I was probably never going to leave the house due to the poor state of my lungs.
It seems this was my lot and I was going to have to get used to it.
Well it wasn't long before I was walking from the front door to the back door with my trusty walking stick, taking my oxygen off and seeing how long I could last before panic set in, managing 3 sit to stands, trying out the bottom few steps of our stairs, eating as much protein as was possible to try and get some muscle back,
Slowly but surely things improved to a level my consultant thought was way out of reach for me so that's why 5 years on in my life in the slow lane I'm happy with my lot, which from a healthy persons view looks pretty poor but then what do they know eh'
(The pic was taken on the day I returned home, a day I thought I would never see)
Tony
Written by
dall05
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Thanks Carole, when I saw this old photo it got me thinking that if there was anyone out there who is in the position I was 5 years ago they might want a bit of encouragement and belief that they to can do the same.
There's nothing like seeing someone who's been there and done it so to speak and to know anything is possible no matter what the experts say.
Hi Tony, I know exactly what you're talking about! I applaud you for your bravery & strength of mind to help yourself be as good as you possibly can be.
It's a great sense of achievement to feel you've done this & can actually do things you never thought possible again.
A year ago come Boxing Day, I was airlifted & spent more than 3 months in intensive care. I thought I'd never get home. Here I am 8 months later & I can do things I never thought possible.
Congratulations & here's to many more years for you to enjoy 🌹
Sounds like you just beat me on the long stay in ICU, I only managed 2 1/2 months in there which they told me was their record at the time.
It sounds like you've done pretty well yourself Jessy so congratulations to you to.
Its still fairly early days for you so keep working hard and you'll hopefully find even more improvement. I was in and out of hospital for the first 2 years but have done quite well since as my strength and immune system improved. Small steps is the way and setting achievable goals to tick off along the way all help.
Thanks Tony, I've been lucky & only had one exacerbation a few weeks ago. My doctor felt I would benefit going into my little local hospital for IV abs. Went in Tuesday, home Saturday. Feeling fine now.
It's my mobility I have to keep working. After being on my back for a long time attached to a ventilator by tracheostomy, the leg muscles etc don't take too kindly to just getting up & walking!
It took months to get the strength back in my legs to walk any distance but you have to keep pushing a little more each time and it gradually comes.
I to had the sedation trache and ventilation treatment for a month and when I came around I couldn't even lift my hand off the bed. My joints were joined together by bone with very little muscle left, they say you start eating yourself to survive and they weren't wrong there. Your left with a bit of a conundrum to solve arn't you,with very poor lung function its almost impossible to work at getting those muscles back.
We did it though didn't we Jessy .
Keep exercising Jessy and those muscles will get stronger and stronger you can be sure of that. x
Thank you Tony for all your kind words of encouragement. I agree with everything you say. My consultant told me it would take more than a year to get my muscles working again.
Bless you, Tony - grim indeed. Yet you have turned it round into such a positive and, having met you, that positivity just oozes from you. Roll on that surgery, and then we shall see you rock climbing, I'm sure! Xx
Thanks for that Fern, its an interesting journey that I've been on over the last 5 years but in amongst all the pain and suffering there has been some great moments.
One in particular was walking on the hills with a certain group of healthunlockeders. . x
Happy 5 years to you Happy 5 years to you. 2 more than me and I haven't managed the Malvern Hills. Just remember I 'm running to catch up and will always be on your wing so have fun hero.
Yeh' Happy 5 years to me Happy 5 years to me Ha Ha, I'm H A P P Y I'm H A P P Y whoops I'm getting a little carried away now.
Thanks DD, Keep running and you will catch me, until then I'll settle for you sitting on my shoulder keeping me from doing stupid stuff like you know I'm capable of.
Its great to know my walking miracle super woman is keeping an eye on me, not everyone is lucky enough to have one xxxxxxxx
Not sure that came out in the right place Ha Ha Duuuuu silly me!!!
Thanks MZ, If I'm feeling a little down all I have to do is think back to where I was 5 years ago and all's well again .
Oh yeh sorry about your Hens, I'm lucky my Dad has about 20 and keeps me in good supply with fresh eggs.
A neighbour of mine keeps chickens, I've never seen them but I can hear them. I need to have a word with him because I've recently seen a fox in my garden. It was mid day and it was up on my bird table. Must have thought he was a flying fox Ha Ha.
So glad you didn't just sit back in your chair and think yourself worse! Now make sure you remember to post that pic again in five years time - I'm sure I am not the only one who will be looking out for it You are an inspiration to many!
Hi Parvati, like you sitting back isn't an option for me. We have to get out and do what ever it takes to help ourselves and hopefully carry a few along with us to do the same.
I may be a little inspiring but you are without a doubt the most inspiring person I have ever known after completing the Great North Run on oxygen.
You must have an inner strength like no other to be able to push yourself that hard while raising money for others along the way.
We will be looking at this picture again in another 5 years you can bet on that .
Wow that's fantastic Tony, you have such a positive spirit, you will live forever!
I know a guy dogwalking who was told he was in end stage and given a year or so. He was told to stay indoors and no exercise. Instead he took the dog out every day although walking very slowly, determined to do as much as he can, very like you, and managed to push himself back to stage 3. He is still going strong... He has the same spirit as you, and like you, is an inspiration. Carry on trucking chuck. xx
Hi C a lot, its been pretty tough at times over these last 5 years but like the dog walking guy you know I have found that keeping moving is far better than sitting around.
Good for him, I'm sure had he taken the advice given it may well have gone the way they predicted.
Thanks C I will keep on trucking as long as I can x
Thanks Daz, the pic was taken 5 years ago on the day I got home from hospital. For a while I ate everything that was put in front of me just to get my weight and muscle back. The hard bit was stopping when I reached my target.
Its good to prove the consultants wrong en' it, I remember the amazed look on the ones face when he was talking to me in the hospital entrance, he couldn't believe that I was stood talking to him without struggling for breath.
Since then things have worsened a little but then that's PF for you, I have nothing to complain about and I know it could be so much worse. .
Keep looking for some answers down that microscope Daz and when you find them , let me be the first to know eh'.
Hi Dall05 cheers i might see whats going on but its cures thin on the ground.
Had terrible weekend myself with me guts squashing my lungs then me breathing played up BUT am guna go docs and see if can get results ct scan and see whats going on
Ad like to say a dont know how you been feeling given ya PF but sadly know to well
Anyway keep proving them wrong .. all the best dall05
I've noticed more recently that after eating, my stomach seems to push into my lungs, my breathing goes to pot and I start coughing up slimy clear gunge.
I'm kinda used to it but not much fun for those around me, keep working on that cure Daz, there's a few on here who could do with it right now .
Well done Tony you are inspiration to every one of us I too was told I might get another year that was nearly five years ago so I hope to try to get another five and hope well show them together Tony congratulations you deserve it and I admire you
Thanks Jjude, I do my best. When I was really ill all I wanted was to talk to someone who had been through what I was going through to prove to me that it was possible to get through it.
After months of very little improvement, weak, bedridden and breathless the doubts started to kick in until on a day when I was starting to give up I thought of my family and not just myself, there was no turning back from that point on. x
That picture does make me a tiny bit emotional Tony, imagining the turmoil in your lives at that time and the major re-adjustments you were all going to have to make. But what an accomplished job you ( and your family) have pulled off from this difficult situation and yes you are a hero to all of us here. You've shown us what can be done with determination, courage and faith in yourself. There are many others here too who constantly inspire by example and to an extent it rubs off on all of us. It has been pointed out to me here that my level of agility and stamina is most unusual in someone with such severe lung disease. There are three wards in this unit as well as the isolation rooms but I'm the only patient who appears in the corridor every so often and plods doggedly up and down. I do this because you are all at my back saying 'don't give up, keep moving'. Thank you for being such an inspiration Tony and I pray that you get that transplant soon.
Hi Billiejean, can't believe your still in hospital but its great to hear that your doing your best to get yourself out of there.
Your doing the right thing with those walks up and down the corridor, keep them up and you'll soon be plodding your way out of the main door and back through your front door.
As you say there are so many here who have inspirational stuff to say and it kind of pushes us all along to improving ourselves a little more.
Its great that it was noticed how well you get around considering your lung condition, its all to easy to think I can't do that and give up but this helps no one especially yourself.
Yes the Healthunlockeders are on your back and by your side also so keep fighting and get back home ASAP.
As for the picture, well it shows how important it is to have your family there because things could have been so different if it weren't for them and their totally committed love and support.
Hi Raven, I won't lie I did have a moment in ICU when I felt so weak and started to think it was all over but then I thought of my family and that gave me the strength to fight on.
Looking back at that photo taken 5 years ago it does make me realise how lucky I am to have such an amazing family who have supported me through some very dark times.
Hopefully the wheels are turning up at Birmingham QE and I'll be back on that transplant list very soon. Its all consultants meetings these next few weeks so things are definitely on the move again x
Thanks Jeanielee, I had tennis elbow once but that's long gone now .
It seems hard work can pay off lucky for me, I remember 5 years back in ICU when all I could think about was breath in 1 and out for3 and this went on for weeks and weeks, sometimes in a C PAP helmet and sometimes on high flow oxygen. It was a struggle but it all turned out well in the end eh'
Thanks Shirley, As you can probably tell I'm just trying to pass on to others never give up no matter how bad things might look, it can all turn out well x
Well done Tony it just goes to show what you can do if you are determined and I'm sure it's the exercise that got you where you are today and its your determination that get's me through the door to our local pool.
I just got back from the pool now that's what I call dedication in this whether. I will hold you to that the drinks are on you and I will bring the cake x
Congratulations to you Tony. All done under your own steam and will power, setting your own goals and working towards them. You have my greatest admiration and I wish you well and much happiness for the future.
Its great to look back at some old photos occasionally, it can make you realise that things can always be a lot worse and help you regroup and push on again.
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You are an inspiration to many!
xx
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