First thing I would like to say is how amazing you all are with your support for me to break that illusive 6 minute walk 500 meter barrier. A big thanks to you all!!!
I awoke at 6.30 this morning to the sound of my phone alarm and slowly got myself sorted for a big day ahead. The day started very well with my breathing noticeably better than its been for sometime so the signs were good for a decent attempt on beating my best 6 minute walk distance.
We arrived at Birmingham's Queen Elizabeth Hospital with a minute to spare due to heavy traffic and were lucky enough to go straight through to see Rochelle the young transplant co-ordinator, who took lots of bloods, weighed me and then said we might as well get the walk over with. I told her to put her trainers on as I was feeling good and she may struggle to keep up.
She zeroed the wheelie measuring device while another nurse attached a satsometer to my finger so they can watch your oxygen levels while on the walk and off we set.
I tend to start off slowly past all of the patients in the waiting area and open the throttle gradually down the very very very long corridor which runs the whole length of the hospital, all was going well until we reached the end and turned to do the return journey, this is when your lungs start to burn a little and your calf muscles tighten. Your legs feel very heavy and the brain say's stop you idiot!. As usual I try and ignore all this and steam on with full concentration on putting one foot in front of the other and see where it takes me.
I heard the young nurse who was watching my blood oxygen levels say are you ok your sats are 67%, which is quite normal for me under these conditions, I said yes ok, she followed up with we don't want you passing out, I smiled and kept on putting one foot in front of the other. I'm puffing very noisily by now and approaching the other end of the corridor where the lifts are, its very busy with people who are staring at me and the two nurses, wondering if they are trying to kill me off or something, I'm very close to the end now so I don't worry about it and keep shuffling along until we get back to the waiting area where we started from. The co-ordinator shouts stop 6 minutes and lifts the measuring device for me to see the reading. It read 497 meters which was so incredibly close to that illusive 500 meters, I could see she was disappointed for me knowing that I had got so close this time but I was happy with my work as this is a personal best for me and only serves to strengthen my knowledge that I will one day beat that dam 500 meter barrier and when I do I'm gonna celebrate like there's no tomorrow.
I'm sat at my computer typing this post to you all and I am celebrating my new personal best with a bottle of Kopparberg cider with Raspberry and it tastes good, very good.
The other good news is after talking to the transplant consultant I should soon be back on the transplant list now.
Remember all you healthunlockeders exercise can hurt a little but it is worth it in the end. and thanks once again for your massive support, it really does help to know there are so many kind people out there who really do care and understand what all this is about.
Tony. youtu.be/LeoKCJNI-k4 Oh yes just thought I would throw this tune in as I'm hoping to get it for a Fathers day present. Enjoy Wilko Johnson and Roger Daltrey, yes I'm still celebrating and singing going back home Yeh!!!!
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dall05
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You know what Toci, I reckon I need a pacemaker up front leading the way, do you fancy the job. . Seriously though I was blinkin close wasn't I xxx as you say next time.
Can't believe how close I got but its still a Personal best since falling ill 4 years ago so things are still going in the right direction. I've got 3 meters to gain in 3 months so that's got to be possible ain't it and with the backing from you and the healthunlockeders should be a walk in the park. xxx
I'm in training already big den, I've got to gain a meter a month which has to be possible. The transplant co-ordinator will have to get her trainers on next time. Get rooting around mid September and I'll get jogging.
Well done Tony! In fact, very well done! Only 3 metres short of your target, AND a personal best at that. WOW. You must be feeling great. Do you have to go this regularly, and if you do how often? I loved hearing all the details of your adventure. Good luck with getting onto the transplant list. Take care, you might have sore muscles tomorrow! hugs xx
Hi huggs, they torture me every 3 months at the transplant check up clinic with an x ray, bloods, a six minute walk and a chat with the consultant so I only have to wait 3 months before I get another chance at beating 500 meters. I will be hobbling tomorrow but in the knowledge that I'm holding my own against Pulmonary Fibrosis and if anything improving very slowly.
I get the feeling my transplant consultant finds this a little baffling as he once said to me everybody who walks through my doors is deteriorating but I've gone from an initial 408 meters to 497 so I intend to keep him baffled for sometime yet. Tony xx
That's the spirit! I just love to prove doctors wrong! Very bad of me I know, but with all my experiences of them..........some of them ask for it. You keep on baffling them. hugs xx
Well done Tony. You will crack it next time. The better weather is here now so up and at em young one. I have every faith in you. A miracle on two feet!! xx
Thanks Suzy, I'm within touching distance now so with some more Malvern Hills altitude training that barrier will be broken in 3 months at my next check. Tony xx
Thanks BattyMumma, I try to keep my posts as positive as possible but that's how I am so that make's things easier. Hard work, positive thinking, and exercise has helped me so hopefully I can inspire some more healthunlockeders to give it a go. Tony x
Didn't quite crack it did I but its left me with a challenge that's giving me good reason to work that little bit harder which in the long run will improve my fitness ready for the transplant should it come along.
If only I had listened to you and had those beans for breakfast.
Cheers!! scrobbitty, that winter training on the dreadmill has done the trick eh' so hopefully there is plenty of Kopparberg's and Berrocca's to be opened along the way to better health.
DALL if there is anyone on this site that EVERYBODY loves & finds inspirational it you.
Your cheerful character shines through all your posts
Actually in one way it's good you did not make it this time as now you still have your 'target' to reach something still to strive for & work towards. & the striving & work will keep you fit until you get your new lungs
Thank you Sohara, I do my best to stay as positive as possible and hope some of it rubbs off on others. Your right about not quite making the 500 meters it still leaves me with that challenge and something to work hard at in the next 3 months.
It sounds hopeful that I'll be back on the transplant list soon so a bit of extra fitness could come in handy, the co-ordinator told me today that I am their fittest person but it wasn't always that way and only exercise weight loss and walking up hills has got me here. My blood oxygen levels tell the real story dropping to 67% which does feel uncomfortable at the time but is short lived and recovery is getting quicker by getting fitter.
I could always make life easier by wearing my oxygen but I like to be seen as I am without any aids so the experts see the real me. Its the only time I push myself without oxygen as I would do more harm than good if done to often.
Hi tony I to am on transplant list and struggled to do my 6 min walking test and the last one I had I stopped twice, think it was cause my transplant coordinator said imagine your walking to the pub but I must have thought imagine walking back from it haha i was hoping it was nerves as its painful for me to do it.I know how you feel. I get frustrated over it as sometimes I struggle to walk from my house to the car but next time I can walk round the block. I know when I have my new heart and lungs all I want to do is run and walk swim play football as I have not done that for a couple years and to make up for it
Hi kelv, I like your sense of humor, you'll have to tell your co-ordinator to be more specific with her advice next time.
Your right about how things change from day to day, one day up and another down. I used to play a lot of club tennis up until 4 years ago when this lung disease came completely out of the blue, I would love to return to the court again someday if the transplant ever happens. I hit a few balls over the net last year with an oxygen cylinder on my back and lasted 5 mins max. It was great to do it but its completely out of reach to play again with these old lungs working at 33%.
Keep walking around that block for now and get ready for transplant, stay as fit as possible kelv and next time you do the 6 minute walk don't drink quite so many of those imaginary pints.
Tony.
YEAH and what a personal best, fantastic!! Hope you really enjoyed your well earned celebrations! Take care, TAD xx
Thanks TAD, I did allow myself a bottle of cider last night which went straight to my head due to the lack of practice these days. It was a good feeling to know that I am still finding ways to squeeze out a little more improvement and things are not deteriorating. That's the good thing about the 6 min walk, it gives you something to compare how you were, right back to the first one you did and helps to confirm that all the hard work is worth while.
I left the good news late just to build up a little tension . Ok I didn't quite do the 500 but in typically British attitude winning isn't everything and I'm still smiling after my new personal best.
If I was an American I would be gutted but as I'm British I'm as pleased as punch.
In three months time after we have all come down from celebrating England winning the world cup I'm gonna be ready to do those extra 3 meters fueled by a healthunlockeders power pack.
There's no doubt that the treadmill has helped me stay fit through the winter which is normally a bad time for me. Ok its hard going at times but I've had a lot of fun playing through all my CDs and I've got loads of the blummin things.
Thanks Mavis, its good to see your still with us and offering your support and experience to us healthunlockeders.
You have seen and felt the very worst of what lung disease can do so I feel very humbled by your support, I will keep going Mavis and we'll see where it takes me eh', with a bit of luck it'll be past that illusive 500 meter mark and beyond.
Tony xx I hope things are getting a little easier for you.
tony glad to read of your quest to do the 500 meters in 6 minutes! I was transplanted 13+ years ago and walk an hour a day; got a single lung so am now trying to regenerate my native one as the transplanted one has been partially lost to rejection you can read more on my site regeneratinglungs.com
Well done! Thanks for sharing your experience with us. We are all too familiar with the burning lungs and tightening leg muscles. It's reassuring to know we're not the only ones to experience them. You're a real trouper.
Even top athletes get the same feelings but they choose to do what they do and its at a completely different level.
A brilliant physio told me this when I was fresh out of a 2 1/2 month holiday in ICU, I was getting badly out of breath just getting out of my bed turning and sitting straight down in a chair.
It registered and I relaxed more and started working hard to improve my situation from that point on.
4 years on I'm still working hard to improve my situation and I'm still getting out of breath but at a completely different level to where I was.
Frankly I think you did incredibly well even though you missed your ultimate target of 500 meters. I have only taken the 6 minute walk test once and although I did a little better than you I my only moderate and my sats don't drop with exercise. Considering your sats drop into the 60s and you are apparently in need of a transplant I think you did very good. I thought I did good but as I say I didn't go all that much further than you did so perhaps I didn't do as well as I thought.
Just curious if anyone else wants to share their results as now I am curious how others have done with the varying degrees of COPD and also wondered if anyone knows what a healthy person would do on the 6 minute walk test?
Well done! I'm not sure of the lead up to your hospital visit but were you required to reach that level of fitness to go on the transplant list? Seems a long long walk! I know you have to have reasonable muscle tone and so on to be considered for the op but 500 m walk seems so long! I was turned down on fitness about 5 years ago, but wonder why I was even put forward if that's the case. Perhaps it's just a case of every patient having different medical circumstances and being assessed slightly differently. All the best for your transplant whenever it is! Gina x
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