Breathe easy {i wish)

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Hi one and all, Went for my lung function test today and it turned out my FEV 1 was'nt as bad as I expected..In 2006 it was 50%, in 2008 42% and today 37% averaging a loss of 5% each year. I really thought I would be in the 20s knowing the deteriation over the last 18 months or so. Even so 37% is not so good when it should apparently be 75 - 80%. My sats were 96% thats good so all in all I think I might live to fight another day. By the way my dr. will prescribe virtually anything for me including Spiriva which I know is expensive, along with serevent, ventolin, and atrovent. I have 28 items on my prescription so there is not much I have'nt tried. Sometimes something I take seems to have an effect and other times nothing eases the breathing and the total lack of energy that goes with it. Still today is a good day and I've managed to do a few odd jobs. By the way does anyone know how Tessa is or if she is still in hospital think of her often. Glad you got your highrate mobility - it really does help and Van sorry about your Alpha thingy (never heard of it before)but its yet another thing to deal with. My name is Carole - why I'm stupid cats and dogs I don;t know ( thought you had to have a code name or something. Anyway good luck and health to all. :D

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  • Posted

    Hi Carole (I like cats and dogs),

    Your FEV 1 is going well. Well done for managing such an impressive prescription list! As for Tessa, I have tried private messages, emails and have had no response. I have also asked Chimera but she has no info other than what we have - so it does not look good does it? Here's hoping Tessa will be back soon and confound us all. Keep smiling



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  • Posted

    Hi Carole, Great to hear your FEV1 news! Thank you also for posting your FEV1's from the past few years - while I know we're all different it still helps to give us 'newbies' some idea of what we can expect.

    I'm due my 'official' annual spirometry when I can get round to it between various other hospital appointments. I'm frantically exercising like a hamster on a wheel in the hopes that I may improve on my last reading. I'm working on the theory that I was massively unfit to start with due to inactivity and weight gain , so that may have given a poorer reading. Oh well, I daresay I will find out soon enough whether all this activity is worth it.

    Hope the sun has been shining for you further along the coast there. it's been almost like summer here (Cornwall), really lifts the spirits to wake to blue skies!

    Stay in touch won't you Carole, don't go doing one of your disappearing tricks again - we would miss you! Besides, we're growing into a nice little bunch here -with Jacee, Flossie, Knittie , Echo and others. Hopefully Tessa too quite soon. Besides, you are our 'Wise Woman' as you are more experienced than us newbies! Lots of love Vanessa xx

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  • Posted

    what a small world, I have just pitched my tent in polperro, went down to the beach to practise some Thichy, and I bump into a good housewife gone bad.

    Forced Expired Volume 1 second readings

    Forced Vital Capacity

    are regarded as innapropriate for those with car crash lungs so if you are able to get a FEV1 and % of predicted reading as a guideline you have still got a \"working\" set of lungs

    spirometry goes up a side street


    As I understand it, the measurements appropriate for those with saggy windbags are given a Slow Vital Capacity test

    pre and post taking two puffs of salbutamol,

    my particular readings for the record are

    S.V.C. 0.47 /1.75PRE

    S.V.C. 0.43 /2.24POST

    this translates as ......salbutamol is effective, although does not translate as increase in actual mobility or activity, noticably

    when are you moving Van

    silly harry was asking about you


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  • Posted

    Hi Eddy, this good housewife gone bad is now gone useless too with soggy carpets, leaky drainage (the house, not me!) :lol: Not really getting in this room for practical reasons, was just checking dying out situation today, will get back to all hopefully by weekend, love Van xx

    PS I wouldn't pitch tent on Polperro beach if I were you - its totally submerged twice daily at high tide - you would be sleeping with the fishes quite literally! :bluefish: :fish: :bluefish:

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  • Posted

    crikey Van, that is all you need, sorry to hear you have even more to put up with, the fish dont trouble eddy much, he likes cod and chips and it saves filling a bath, but Vanessa I am lost for words other than, you carry on being strong against adversity, just wish I could do something to help
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  • Posted

    also the FEV1 updating is good plan, as like Vanessa I believe lung function, defined by spirometry results can improve despite all objections from the professionals to the contrary.

    they say forced expiry can never improve

    vannessa I am looking to you to show better blow results

    I am below FEV1 appropriate testing apparently

    forced is not a good benchmarker

    the steady blow is the one they grade me on


    slow vital capacity

    I am a Dumbo and do not pretend to understand as yet, also any questioning is met with they won't be of any use to you etc. and try to steer me away from comprehending the predicted % clarification as to what remaining function exists

    so hey ho

    in 2005 was 6 month life prognosis

    I used to walk pretty normally for a few years after, to shops, but have had a couple of hospital addmissions with pnumonia since

    at the moment can walk for 20 mins max very slowly and intend to increase this each day

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  • Posted

    Eddy, you are amazing!!

    Can't say I really understand FEV1 and SVC but I am with you in believing we can improve results. To be given 6 months to live five years ago shows we can fight our way back. 20 minutes walking is a lot more than I can manage but like you I am hoping to improve my fitness. And you should keep fighting for info - don't let them put you off. Good Luck


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  • Posted

    Thanks Jacee,

    all you can do is take it one small step at a time, day by day, like a roller coaster ho ho and I'm clinging on ready for next day.

    Vanessa please get poppy to visit her other site

    I see you at Blf and you are so right about all you say and would love to hear from you there,

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  • Posted

    Iwas there when you visited the other day but the site was screwing up a bit....please come back and post, left you some messages, its all embryonic, needs ironing out etc. dont give up on us there just yet.

    I see you checking at the sterile site being reviewed where we were all at once. just hope it is sorted for the sake of justice and the vulnerable people

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  • Posted

    hope you enjoy a joke too Van by the resident BLF composter

    visit the \"poppy\" field Van speak to us while they are sorting out mess

    [i:0969b081dc]Hi Vanessa and Ian - thank you for your input :O)

    Were you talking about the 24 hour pulse oxipulse meter that we are sometimes fitted with by the hospital Ian? I'm not sure if this measures co2 arterial gas as well as o2 levels - may be this is a different question to what Mark was answering re my original query.[/i:0969b081dc]

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