all very real!!

[maddyo2]

so last week i was given some options for lung volume reduction procedures and have asked for 6 months to discuss with family and to decide whether to go ahead or not..today i recieived app for CT scan..the start of tests to see if i am eligible for this op ..all seems very quick and very real now

[Hidden]

Hello Maddy,

can you say a little more?

What is it you have, I could not find it anywhere, do you have COPD.

If yes, which stage?

What's your age?

I just read that you were diagnosed 6 years ago, me too, in 2006.

Were you diagnosed with mild?

[maddyo2]

hi Tjohn. thank you for your reply ..i am 52 . I was misdiagnosed with asthma in 1989 and not correctly diagnosed till 2006 by which time i was told it is fairly extensive..i was told if i stop smoking it would plateux but thats not the case it seems..i thought i was handling it quite well as i holiday with friends and socialise but i have noticed i get breathless a lot easier . the op i am being offered is a lung volume reduction ,the tests i am having are to determine whether i can have the new non surgical op involving valves been inserted through my windpipe into my airways or open surgery,i have read up on this and it sounds like i am end stage ...we have also discussed a transplant,but all will depend on these tests to determine how bad my lungs are ..sorry i have copd predominately emphysema,i also have a heart condition(recurring pericarditis) brought on by pneumonia 2 years ago

[Hidden in reply to maddyo2]

Thanks for your reply Maddy,

I have to pop out, but, god that's nasty to be misdiagnosed, in retrospect, like when I remembered what had happened with me, I'd been along to see my doctor long before diagnosis, he did say to quit smoking as I had a bad cough (that's why I was visiting), he said you need your lungs, but did he hand me a pamphlet where I might have learned about, even heard of COPD, no he did not, so I came to hear of it when diagnosed with it, much later, a number of years later.

I like most others had only ever heard of cancer being related to smoking.

I'm no expert, so I suppose though you have had spirometric tests?

It's surprising how some people are being told all sorts and they have not even had a spirometric test.

You say end stage, so you mean severe, I am guessing

they the doctors must have tested you with spirometry.

I understand your concerns, after all one doesn't wish to think of oneself as beuing some kind of guinea pig,

I think you meed to find out the facts related to the lung reduction, meaning, what the risks are and the levels of risk involved.

I'd say, find out what are the statistics related to all known operations say, what are the successes, what number of failures, what did failure mean for the patient.

Good luck and this last bit above of my post is the most relevant bit I think for you in your situation.

I am 54, so we have a couple of things in common, I mean I can see how you feel.

I'm not saying take this on-board but I think I heard that reductive surgery can be very beneficial, the important thing to find out is the risk(s) attached to the process/operation.

Then you can make up your mind, taking into account how you are at present.

[Hidden]

Good luck with what you decide maddy02 so young to have this to face

[maddyo2]

thank you Dott,,,quite scared now,don't know whether to feel lucky there might be something they can do

[Hidden]

Hoping everything goes well for you maddy and you can feel confident in the decisions you make. The CT scan results will help you with that I think.

Welcome here and keep us posted how things are going for you.

Don't hesitate to call the BLF helpline for further support and advice.

All good wishes to you.

[maddyo2]

thank you zoee..i was hoping that someone here had had the procedure and could help but i will certainly update my blog if it helps others

[richie54 in reply to maddyo2]

hi maddy 02

just joined site so i hope i don't upset you in anyway,I don't know if u have looked on you tube but it shows new non surgical op ,I myself is just in the proses of going through my gp and consultant to have this done but still waiting for consultant to reply to doc.I am 58 and have had copd for 7 years i dont need to go into the in and out of this illness we have all been there,And like most it terrifies me at times mostly in the winter,I think i have said enough for now i do hope every thing goes fine for u and wish u luck what ever u decide

[maddyo2 in reply to richie54]

hi ritchie thanks for your reply .Yes this is the new op i am being tested for eligiblity for it involves palcing one way valves in the airways via your windpipe ..i have already been referred and i am starting the 4 months of tests this saturday..i cannot find anyone that has had this procedure in the uk hence me joining this site...if i cannot have this then i suppose it will have to be open surgery or transplant and thats even more scarey because of the high risk.the decision is mine whether or not to have the op.

could you please post and keep me informed of your progress as it sounds like we are indeed in the same boat

[richie54 in reply to maddyo2]

will try and keep u posted but not to sure about these blogs and tags and things,Call me thick but i have enough trouble working my computer .

[maddyo2]

i have had excellent care and all the tests that go with it i have had ct scans and xrays and all lead them to tell me i am severe yes. He did mention the LVR and lung transplant to me in 2006,said probably between 50-55 but back then that seemed a long way off... they have passed me over from my consultant in chest clinic to the actual surgeon so i will get every chance to question him,and believe you me i will...this valve op i have researched on the internet ...not a lot about it on uk sites but plenty of trials done in the USA,,but its all worst case scenario,however it is still less riskier than open surgery naturally and no scars(yeah i can still wear my bikini)...dissappointed to see there is no-one on here that has either had it done or even had the suggestion of it...

[tanyamarie]

hello,

being positive I think it is a great step forward, however, naturally scary too. My dad is in the unfortunate position that there is nothing that can be done for him and yet I wish daily that 'if only' he could have the volume reduction surgery etc. So because of that I say it is fantastic that there are options for you and you should grab it with both hands and thinko f how your life will change for the better.

We are a nation of pessimists and we need to be more optimistic I reckon and always try to see the good in everything and everyone. If I hear of anyone who has had it done I shall let you know, but it is a tried and tested area and maybe the BLF itself could out you in touch with someone who has had personal experience of it.

Take care x

[maddyo2 in reply to tanyamarie]

hi, tanyamarie,so sorry to hear about your dad x .I am for the most part an optimist but i rely heavily on facts and there doesnt seem to be enough information about this..i dont think it necessarely(spelling) buys me more time ,more quality,but one does need to way up the risks too.

talking to people helps even if they havent got the information i need as i dont want to burden my children

[maddyo2 in reply to maddyo2]

weigh

[tanyamarie]

As a daughter of someone with a lung condition I want to be burdened, not that I see it as that though, so give em a chance hun and let them decide how they can help you.

[maddyo2 in reply to tanyamarie]

thank you ,my daughter is about to go into her second year of her masters,and is doing so well ..but i hear what your saying and irs quite reassuring if things get too tough

[tanyamarie]

Just think if roles were reversed..........................Good luck to your daughter!

[maddyo2]

thank you

[Hidden]

this seems to explain it well

spirehealthcare.com/leeds/m...

[maddyo2]

thank you its kinda what has already been explained...i cant seem to find any patients that have had it done and there is no mention of any side effects ,Having said that i think if i am able this is the one i think i am going to choose ...thanks for your help

[maddyo2]

Hi Stitch

thanks for your reply,.its comforting to know i have someone i can share my experiences with. i was told too i was eligible for transplant 6 years ago and they were maybe going to skip the LVR,but they have decided that this would be best now.Am i right in thinking that if i have the non surgical LVR than i can still have the transplant further down the line ..have you been told this too?

[maddyo2]

hi folks.

I have today been copied in to a letter from my consultant to my gp.In the letter it states that although i am often breathless,i have not been hopitalized with exacerbations ,i am very active and have managed to gain weight so he has decided now would be a good time to perform the LVR.So it looks like things are not as grim as i first thought and i am being offered this because i am managing my emphysema well and have stopped smoking 6 years ago.

[Hidden]

hi ive been reading up on blogs as I only joined in jan 2013 .can u tell me if u have progressed any further with lvr/ take care