Wow, just wow. I've just gone up the stairs to the loo And I Wasn't Breathless At All! I've been two days indoors after braving (stupiding) gale conditions on Wednesday to visit (a)Dora my granddaughter and then being very sob. Got told off by various people here and rightly so. So I took our advice and have been housebound ever since, way boring but necessary. Too much time on the net.
Speaking of the net, I'm about to leave the copd uk FB page over censorship. There was a thread where someone asked if any members had used cannabis. 20 - 30 replies, links to medical studies, opinions for and against (healthy debate) then got deleted while I was having a snooze. When I asked why I was told by admin that as it was illegal in this country, they couldn't be seen to be 'condoning', vulnerable members etc and "you are welcome to leave this group at any time". Now, I don't go around advocating its use but as a past user (and even now I have a little nibble, but on a vapouriser, for medical purposes of course) it strikes me as something that should be out there for discussion although I'm not planning it here and I'm not on any mission. I would be interested in the attitude of the community mods here to this and similar subjects and very much hoping that such debate won't get squashed.
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That sounds fabulous news on the breathing front. Well chuffed for you.
Regards discussions on cannabis, one would sincerely hope the mods would leave it alone, providing the discussions didn't become personally abusive. I have seen cannabis being mentioned on this site previously and as far as I am aware the posts were not removed.
You're doing well, mate. Wondered where you were the last couple of days on FB. Keep up the good work, look after yourself, and do as you are told. Once the weather gets reasonable, concentrate for a bit on fitness. Pester your GP to get you on a rehab course, (after all they wouldn't want that expensive op wasted, would they?) and then on to something at the Gym. In Wales, we have something called 'The National Exercise Referral Scheme'. Done at local Sports or Recreation Centres, They have fitness instructors who are trained to monitor BP, PR, and O2 Sats. Push for it.
Wow! I certainly found her heavy handed and intolerant yesterday. Maybe it was building to a head and I just copped flak for it? Did she give any reasons?
Hi notlocal , Pleased to see you on here as i had been following you on f/b and saw the posts today , thought they were interesting and dont see that they should have been deleted , Very interested in your lung op as might be having it myself later this year but not sure what they will be doing yet . What was your fev1 when you had it done please ?
Thanks for the support.I'm still there FTTB, currently slugging it out with Kay! Oh god, my fev1? I only realised last night that I haven't been paying attention to the COPD stats. I blow and they tell me if it's good or bad. Or they don't. I'm in the process of boning up on the internet about it. I'm also going to ask for the data on my follow up appointment on March 5th.
Thanks [in a way] for removing yourself from fbcopd uk, otherwise I'd never have known about this group.
I've messaged you on fb, so you can reply me there or here.
I've re-read that whole thread & I've the impression that Kay & others seem quite narrow in outlook in a number of ways, indeed she's reprimanded me on a few occasions just for requiring source materials for verification of some statements/pronouncements/assumptions.
Anyway, enough blather, good luck with your convalescence & look forward more conflabs with you & others on here
Cheers MrHappy! Yeah, i pulled the plug tonight (not without some hesitation) but I think she has control issues. I didn't get your FB message...May your tubes be free!
Yeah, John Ratcliffe told me earlier! I felt something wasn't right yesterday, picked up on lots of negativity. In the end I had no choice but to leave, she'd painted herself into a corner, but I wasn't admin so it had to be me who left. Pity that. Maybe she'll feel lighter now. I hope so.
Hi , That really is excellent news, I look forward to your posts, great news, know what the 13 steps to the loo are like ! you will soon be doing two at a time, Heather,x
Hi..thanks. For some reason my sob not so good this morning. I expect there will be good days and..not so good days. Am going to brave Tescos later (I'm out of rum and chocolate )
I know - I've left that group and it feels good. Was like their own private kingdom, a touch claustrophobic. Hope you're well as can be in the Wye valley, may get up that way when this bitch of a winter subsides. Like your profile...
Hah! A close friend just asked me that 5 mins ago on skype. No, can't feel a thing there. I heard a few rattly sounds mid week, could have been from them but nothing since. Is the op a possibility for you?
Hey, I'm moderate (no one's ever said, but I'm not on oxygen or anything). Mine was totally free on the NHS and my consultant said it saved the NHS money in the long term. He said that the actual cost is 5 - 7 grand. Where are you and do you think your local health authority is doing its job? And yes, the op is totally reversible. (They've done about 20 of these here in Bristol in the last year).
You're doing fine twiceshy3, keep on keeping on. Consultant is definitely the next step in this process. Look forward to talking again, and I will be posting stuff here and not only about the op (which a lot of people are interested in). Ciao!
yes it gives others an insight on what can be done without the knowledge of people mentioning other options there in the dark on treatments ,I would rather know the ins and outs of everything than nothing,keep us all informed ,Ciao to you,xxx
twiceshy3, If you are in Manchester, they do the valve op at Wythenshawe. I believe the consultants name is Mr. Barraclough. Very knowledgable man. You will need a referral.
thank you johnwr, yes I,ve heard of him, I do a lot of research call me nosey but without it what else is there for us,i,m also a trialer at the medical evalutions unit near Wythenshawe hospital, do you no it,there trialing a spray for the cough with copd .while I,m still at this level I,m doing what I can while I can,i don't think the dcs like us when we go to them with something and they say what is that,i was backward before but not now,in may I have my review and will ask for a referral,thank you,xxx
Hiya sorry to hear u left FB group I'm intreasted to see how things go with you regarding op, I didn't see the msgs on there which Kay was unhappy with, they was already deleted b 4 I got online, shame I would have liked to have read them as ev body is allowed an opinion anyway see u on here with your updates, u take care, Saph x
Hi not local, just to let you know met my consultant today re: Endobronical valves. He is arranging lung function tests at my local hospital. Then to go back to Jimmy's Leeds for a Nuclear scan? If suitable he will do the op. he also stated that if this doesn't work he may carry out LVR . He said my lungs are in a very poor condition and recommends I do this. By the way my name is Jan. hope you are still improving.
Hi Jan, bad news and good news huh? Unfortunate about the state of your lungs. What's your present fev1? My news is not so good, the parts that were supposed to collapse after the valve insertion just haven't and my fev1 is the same as before. My FVC has improved a lot though, by 20% so it's not all bad news. I posted this about 10 days ago. Good luck with the 'nuclear' scan (Lung Perfusion scan I think). Warning, the mask is really tight and you have to not panic! It takes exactly 14 minutes so just concentrate on breathing in and out. Ciao, Bob
Hi there Jan again, have not had any Lung Function tests since last August that is why the consultant obviously needs it all again. I am a bit ignorant in the jargon but reading my results from August myFEV 1.05. FVC1.66 (48% and 64%) predicted respectively. FEV/FVC ratio 63%. Gas transfer measurements severly reduced. Sats dropping to 77% post exercise. I hope you understand all that as I don't.
Thank you for replying. Take care
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, Very interested in your lung op as might be having it myself later this year but not sure what they will be doing yet . What was your fev1 when you had it done please ? 
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