Hello - New members please introduce yourselves here

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craiggc Posted: 02-26-2009 1:12 PM

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Hello

Welcome you to the BLF Web Community.

If you haven’t already done so please read the community rules and guidelines – they are there to hopefully help make the community run smoothly.

I'm Mark,one of the community moderators, so if you ever have any questions about the community etc please contact me (or one of the other moderators - Tracey, Carol or Biddy) at forum.administration@blf-uk.org.

Also if at any stage you want to speak to someone about your condition and treatment, please remember that you can call our Helpline on 08458 50 50 20 - 

I hope you find the community supportive, infomative and enjoyable.

Mark Pilling

Advice Service Manager

British Lung Foundation

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amagson replied on 02-26-2009 6:06 PM

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My names is Alan. I`m 64 years old and was diagnosed with Emphysema in 2007 after 4 years with a persistent cough which no one could explain.  I use 2 inhalers a day and last November had a collapsed lung which had to be operated on.  Apart from that I`m fine!

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jspurling replied on 03-01-2009 9:51 PM

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hi there welcometo our new band of sufferers and cares. we are friendly and helpful so sing out if you want help or just to let off steam

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Chris replied on 03-02-2009 1:59 PM

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 Hi Jeanette,hows the motorbiking going with your condition,I gave up on bikes when my son came along 3yrs ago(didn't have the time).Now I have a little bit more time I felt the itch to get back on a bike again but now I've been diagnosed with Emphysema I don't know if it would be a good ideaor not 

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margaret1 replied on 03-03-2009 1:47 PM

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i think i have done this the wrong way round....but this is the first time i have joined a forum.

i think it is an excellent idea and we all have different experiences of our particular conditions and it is good to share......i have been putting my 'two pennuth' in to certain areas and have just thought i should have introduced myself first

well here goes....i am 63 and i will try and give you a brief outline of my history with this horrible illness......i was a 20 a day smoker all my life...tried to give up many times.....9 years ago i was admitted to hospital with a very bad chest infection....they told me to stop smoking...i was not given any more information...just that it wasn't an inherited condition even tho my dad and mothers brother had both died from empsemia.....i continued working full time and led a very busy life.....i often felt tired but put it down to getting older......at 59....3 months off retirement...i was back again in hospital

this time i had a different consultant and team...they were very good.....they explained that in 1999 my lung function was  30% of what it should have been and now in 2005 it was a mere 15%......they were surprised that i was holding down a full time job.....they explained that my lung condition would not improve....but it would not decline as rapidly as it had in the last six years if i could quit smoking and they would support me with medication etc.

it took me many months to come to terms with this news and i had to drastically change many areas in my life

i try to be realistic and positive....there are many things i cannot do...but there is still lots of things i can do...i enjoy life and my useful lung %age has not reduced at all since 2005....i sometimes cannot believe it....

over a year ago (after many tests and with my permission) i was put forward for a lung transplant .....it is a very high risk operation especially for anyone over 60....at the moment i am a bit too well!!! to go on the active list.....but that may be the future.....when i think about it i get excited and terrified at the same time.......i have also been offered a lung reduction.....but i have decided to refuse that option....i was in a high risk group...

being a novice at forums....i think i will start two new 'threads'...'links'....lung transplant and lung reduction...i have lots of information about both subjects but you can read everything possible... but hearing from people who have experience in the area is much more valuable ....thank you everyone for reading this.......yes it is a bit 'Catherine Cooksinish'...i come from the northeast of england as well  

cheers Margaret

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Eileen Peacock replied on 03-03-2009 2:44 PM

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Hi Margaret it was good to read your story.  I hope you are keeping well at this present time.  I belong to a Breathe Easy group and the secreatary of this group has had a double lung transplant done about seven years ago.  It may be more but she is an inspiration to anyone that might need to think about having one themselves.

Eileen.

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SusieQ replied on 03-04-2009 1:37 PM

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Hi Eileen,

Just curious - wondering whether you are in the same BE group as Pat Levitsky and the late Martin Sperry (?) ?

They both live(d) in Bucks and I know that they are / were part of a BE set up.  I met them both at a fabulous place called Ickwell Bury in Bedfordshire.  It was the home of the Yoga for Health Foundation and they put on courses for those with breathing difficulties ........ yoga, breathing exercises, dietary, how lungs work and lots of other information.  We had a fantastic week there and went several years running.  Unfortunately now, some developer has taken over the building and land (the Foundation never owned it, only rented) and that facility has been lost.  They ran lots of other courses as well - for those with ME, with MS, with Arthritis and so on - it really was a great place.

Enough of that - as I said just curious and wondering.

Sue

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briangill replied on 03-04-2009 10:10 PM

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 HI I'm Brian first time on a forum to introduce myself I'm 62 diagnosed with COPD in 2005
treatment on two inhalers daily
still working in a call centre but finding voice fading out if on a long call
 stopped smoking when first told also on high blood pressure medication
overweight but reducing this  by watching diet and exercise
recently had annual COPD check up lung capacity  at 40%
still learning about this

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Chris replied on 03-05-2009 2:17 PM

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 Hello Brian,

Welcome aboard

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Simon replied on 03-05-2009 3:15 PM

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 Hi I'm Simon.  Until last November I had spent an increasing amount of time caring for my 81 year old Mother (who lived with me), but who passed away suddenly while supposedly undergoing rehabilitation for extreme anxiety that COPD can bring on.

Briefly, she had smoked up to 20 cigarettes / day until she stopped aged 60.   About 6 years ago she found difficulty walking uphill and was initially diagnosed with asthma, and eventually COPD.  2 years ago she had a chest infection and was admitted to A&E, where a pulmonary embolism was found.  While undergoing treatment she also acquired c.diff.  After 9 weeks in hospital she returned home with a concentrator, and eventually resumed a fairly independent life where the concentrator was eventually only necessary to get up stairs.

 Everything was pretty stable for 9 months, until there was an increasing frequency of panic attacks and loss of confidence / independence.  I took her to the GP about 6 times and the only thing that was done was a review of inhalers, plus advised to "calm down".  In September I asked about a referral to Breathlessness Clinic and eventually after repeated pestering this was done - however the referral goes via a unit in Southampton and is far from quick!

In October, the extreme panic attacks resulted in 4 A&E admittances in 10 days.  Each time tests were done that showed STATS that seemed pretty robust to me (between 89% - 93% even with oxygen off), and each time she was sent straight home again.  Finally the carers managed to get a referral for some help to get the panic attacks that were triggering extreme breathlessness, and she was transferred to an NHS rehab unit.

However the NHS sponsored facility had no oxygen supply (but used her concentrator) and I suspect STATS were only checked irregularly.  Following a change of medication to help anxiety there followed good days, and bad days.  On the bad days she could barely eat and was in distress most of the day.

As a result of this I have 3 main concerns about help for COPD patients:

1. what guidelines do / should exist for NHS facilities that undertake COPD rehabilitation.
2. the apparent lack of accessible support under the NHS for any assistance with any of the psychological aspects that can arise with COPD, that can cause increased exacerbations.
3. at no point did the GP or the hospital consultants talk to me about the possibility of End Stage COPD.  To be honest I'm not convinced that was truly the cause of death - it is more likely the increasing struggle for breath over the last 8 weeks of her life had completely worn her down. 

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SusieQ replied on 03-05-2009 5:07 PM

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Hi Simon,

So sorry to hear about your Mum - it must have been very distressing for you and for her.

It sounds as though her original stay in hospital brought about the anxiety and panic attacks, which seem to me to have been the main cause of her deterioration.  Not sure what the Docs can do about panic attacks apart from counselling sessions and, to be honest, have my doubts about how well they would have worked given your Mum's age.  Also never heard of Breathlessness Clinics and wonder about their efficacy for COPD patients - are they hospital clinics or for anxiety/panic related conditions?  When I did Pulmonary Rehab, they had several concentrators present - in fact it was there that I discovered that I needed to be on oxygen.

In answer to your fears or concerns:

1.        I can only speak for myself and, as I have said before, I am blessed with fantastic support in my area (GP, Hospital, Respiratory Nurse) and any rehab, i.e. Pulmonary Rehab, is done under their jurisdiction.  In fact my GP was present at all sessions - to oversee and also to have a chat with people if they needed it, etc. 

2.       As for psychological impact, again support is there, plus friends, family, ? Breathe Easy Clubs ?, plus, hopefully in time, this forum. We are all different and  COPD affects us differently, as do psychological impacts. I know that stress has an impact on my breathing, but does not necessarily cause an infection, which is what an exacerbation is.  I may weaken my immune system, which, in turn, will make me more vulnerable to bugs.  Certainly for me, having had this thing for so long, I think I know how to manage it and where to turn for help.

3.       As for End Stage COPD - will look at that when I get there ........... in about 20 years time!!!!!!!!

Simon - hope that has put your mind at rest a little that some, if not most, of us do get good treatment and help. Thank you for sharing your story and again my condolences.

Sue

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ianmacpherson replied on 03-06-2009 10:46 PM

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hello and thank you for the welcome.

Like a lot of your forum contributors I am a beginner at the forum scene.

I am Ian, 74 years old and was diagnosed as COPD 3 years ago (chronic bronchitis).

My cause is simple : I started smoking at the age of 12 and carried on until I was 50 years old, at which time a stressful job had me smoking 50/60 per day. A threat of non-treatment for a new Doctor forced me to be realistic and I stopped - but not before the damage had been done.

When I was diagnosed I joined a rehab Group and when that was over I responded to a plea from the BLF to assist in forrming a Breathe Easy Group in my area. Because I turned up with a note pad and a pen I was elected Joint Group Leader and we have now just "celebrated" our second AGM.

When I look and listen to fellow participants I feel a bit of a fraud by comparison and but I am heartened by the overall courage and cheerfulness of people who are suffering very badly and am resolved to do what I can to support those who attend Group meetings, and persuade others to join.

In terms of inhalers I have Spiriva each morning (I was interested to read of a fellow forum contributor that she uses hers at night and finds it more effective) and use Ventoilin as and when required.

I am interested now in how the forum progresses and look forward to learning more about the experiences of others through this medium.

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normanomalley replied on 03-07-2009 7:21 PM

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Hello, My name is Norman and I can relaye to almost all your messages in the forum letters. I ,too, have COPD (Emphysema) brought on by my stupid addiction to smoking during the first 40= years of my life - I also developed Cough Snycoupe in my early thirties and for those who do not know this condition - I cough hard, my htroat closes up, oxygen is shut off to the brain and I pass out- only to recover fulll conciousness in a few seconds. Of course it can happen anywhere - bars, home, at friends houses etc.  Because I hit two motorway barriers through this and survived I decided to stop driving.  This is still I large regret and all due to smoking.

Of late I have been having continual excasabations and chest infections and a bout of pnumonia in August last year despite having a pnumonia jab two years ago.

Like most of you I find it hard to copewith the constant shortage of breath especially after a chest infection. I also find it very hard to expel the mucus from my lungs despite taking Muchodyne tablets.

I am lucky to have a wife who understands most of the problems connected with my conditions and looks after me when I am ill and monitors what I do even when I am well. She's a treasure and I would not exist without her, so I consider mysef a lucky one because many sufferers are alone with their problems.

If it is  any help to others I learned to inhale three times normally, then inhale three times hard, then 'Huff' the mucus out of your throat area. It wroks well most times. Like most of you I am on on Spriva, Ceretide and salbutamol blue inhaer, plus Muchodyne Tablets which are supposed to break up the phlegm.

Over the past 6months I have developed 'Panic'  attacks when I try to get to sleep either in the chair or in bed.  As soon as I close my eyes I begin to think I amgoing to suffocate.  Dr. has now put me on diasapan tablets and they seem to give me a full nights sleep whereas before I would only get about two hours - wake up - and then not be able to close my eyes to sleep gain because of my panic attack.

I have recently seen a @Professor@ in cough medicine in an attempt to lessen my cough. - interestingly he diagnosed I had two coughs 1) an influx cough which he said he could cure and has put me on tablets to do just this - and in the main seem to be working but they cause awaful wind. The othjerr cough associated with COPD he can't do much about because we have to cough to get the mucus up, although he says that reducing the acid in my stomach will help to reuce the amoun of mucus in my chest (I wonder?)

Like you I will try anything to reduce this awful chest cough associated with our disease.  I also take Omeprzole which again reduced acid in the stomach and stops it getting into the throat to cause coffing. 

I worry about all these so called cures. I also have type 2 diabetas  and they are still playing at trying to control this condition. At the moment I take 10 tablets in the morning and 9 tablets at night plus my puffers. Can any one beat that?

Bet you all feel great after reading this but maybe i has helped in some way. Keep your chin up  - it helps you cough better!!!!!

 Norman (wigan)

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Chris replied on 03-07-2009 9:21 PM

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 Thanks for the info Jeanette,I suffer quite bad hear living by the sea what with the damp air maybe the extra wind blast might help or maybe it won't.I've got a friend in Scotland whos coming to see me in a few weeks and hes bringing his bike down with him so I can have a blast and see how it affects me......Fingers crossed hey.

I will keep you informed of how it goes.

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Chris replied on 03-07-2009 9:38 PM

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 Hello Ian and welcome aboard,

I take my hat off to you for stopping smoking especially when you were on that many a day.I smoked too but never anymore than 10 a day,throughout the years I tried giving up but only one thing stopped me and that was major surgery on my left lung then 3 months later I contracted Emphysema needless to say I've never wanted to smoke again.

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Chris replied on 03-07-2009 9:47 PM

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 Hi Norman,

Welcome aboard.

Wigan hey,my wife is also from that neck of the woods.

Sorry to hear about all your troubles.I too take Omeprazole but thats purely because I over did it with the curries once and fried my stomach lining.

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geoff gurney replied on 03-09-2009 5:40 PM

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Hi Craig   I think I must be a bit thick as I dont really know how to use the forum. I'd like to respond to several letters. My name is Geoff and I'm 62. my lung capacity is down to 20% tho I fear it might be even less now after 5 years. I still do all own shopping, cooking etc plus drive a car but as for walks or bike riding, are they kidding? 20 paces and I have to lean on something. In response to one letter I really miss my m'cycles as the brit is a 'bonnie' and I dont have enough puff to kick it over. I am intrigued by those hip packs that are available as they are more portable than the oxygen cylinders altho rather costly.  The other letter that grabbed my attention was from a lady who was getting a transplant altho over 60. I got blanked at Papworth for that very reason.  Incidentally I am very intrigued by the mention of the latest stem cell research as this would appear ideally suited to emphysema and I recall some mention of a substance that involves a course of injections, called 'prochymal' that is hoped will reverse the damage caused. Its American, any thoughts or info on this?  Geoff

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SusieQ replied on 03-09-2009 9:01 PM

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Hi Geoff,

In exactly the same boat as the rest of us when we first logged on.  If you want to respond to a particular thread, just hit the reply button and type in the box below the copy of the message.  That copy will not appear unless you want it to and then hit the quote button.  Also we have some wonderful people roaming around, called Moderators, and they can amend all our errors swiftly and silenty ....... I know because they have done it for me several times!!

As for the stem cell research - read about that and was, like you, very interested, but it is very early days, so am waiting and watching.

Sue

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geoff gurney replied on 03-10-2009 3:15 PM

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Hi I notice on the back of the latest club letter adverts for oxygen concentrators or conserver and tho they are expensive I wonder if anyone can throw some light on to their usefulness, what they do exactly and how beneficial they really are.  I live in hope that the stem cell research will save me from this terrible mistake that has been inflicted upon me but in the meantime anything which will improve my mobility will be most welcome.......................Geoff

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SusieQ replied on 03-10-2009 4:04 PM

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Hi Geoff,

My understanding is that an oxygen concentrator takes the air in circulation and removes some of the gases which we can do without and leaves a higher concentration of oxygen, which is then pumped in a continuous stream via either a mask or a canula (pronged things up the nose).  Was told that there is something like 21% concentration of oxygen in the air and via the concentrator we get 28%  ..  think those were the figures, but am more than happy to be corrected.  The oxygen is delivered at a set literage per minute, depending on what you have been prescribed.

Would add that if you have been put on LTOT - long term oxygen therapy - you do not have to pay for your concentrator;  it is delivered and maintained by whichever company services your area.  If you, however, want a portable concentrator, then you do have to buy that yourself ......... at the moment.

A conserver is a device which interrupts the continuous stream and only delivers oxygen when you breathe in.  Saves on oxygen and, if you are out with a cylinder or similar, makes it last for longer.  On my portable I have what is called pulse delivery ....... same thing.

As for how useful - if you have been tested and prescribed, then that is because they will do you good.  They allow your other organs, which might struggle, to receive their fair share and remain therefore healthier.

Hope that makes some sense, if not - fire away.

Sue

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Chris replied on 03-11-2009 12:58 AM

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geoffgurney:

I dont have enough puff to kick it over

Welcome Geoff,

 I opted for the electronic ignition,much easier.......that is untill it stopped working once

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geoff gurney replied on 03-11-2009 11:25 PM

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Sue  thanks for the info re oxygen concentrators. Yep, im on the portable cylinders which I use occasionally, when i'm on exercise bike or as back up in the car but they are bulky and so their use is minimal but perhaps on your advice I should use more as I am suffering muscle wasteage tho trying hard to build up using dumbell and bike. Concentrators sound ideal and if can be worn like a man-bag perhaps I could ride m'cycle again.  Thanks to Chris, do have boyer fitted also big Kwacker but that demands upper body strength which I fear I no longer have enough of, but I'll keep doing the exercises. Incidentally would you recommend any body building type tablets? Other thought, took viagra and found that actually helped my breathing but Doc wont give on NHS.    Geoff

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margaret1 replied on 03-12-2009 12:47 PM

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geoff.....hya from margaret.....i am the lady who has had the tests for lung transplant

i am going to start a new 'thread??'....and maybe bore everyone with the information i have....

i will do it now

cheers margaret

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Alistair replied on 03-16-2009 3:12 PM

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 Dear June,

Many thanks for your post, and welcome to the forum.

You seem to have triggered our automatic swear filter (congratulations, you're the first!) - I'm 99% sure I know what word it was, and I've now removed it from the 'swear' list, but I won't take it on myself to replace the '***' in your post just in case I'm wrong!

Hope your visit to the docs goes well, and I hope you will find this forum helpful and informative.

Love the avatar!

Alistair

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Chris replied on 03-16-2009 11:27 PM

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  Hi June,

Welcome to the forums.Sorry to hear your having problems and I hope everything went well at the docs

Chris

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Geof the Miner replied on 04-26-2009 10:27 PM

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My name is geof I am 67 years of age; I have been married to my wife Ann for 36 happy years; and yes I was a 'Coal Miner' working on the coal face for thirty years;where there was everything that you didn't want, dust, water and yes a certain amount of danger; but believe it or not it was a job I enjoyed. I retired from work 17 months before my 65th bithday due to il health. At that time it was diagnosed as Industrial Asthma; I couldn't speak to anyone before I started coughing really bad so much so it became an embarrassment. After finishing work I never went out only if I was forced; hence it was a lack of exercise so that my condition got worse and worse; but I didn't know that it was the lack of exercise that was making me worse. There were nobody there to tell you, so through the help of self diagnosis I became a very poorly person who was ready to die. I use to tell people that if the tooth fairy came to me and said that I would be dead by tomorrow morning; then I would get all the banners out and have a street party to celebrate. I couldn't have got any lower, it was only the love around me by my wife Ann and my two daughters and grandchildren that stopped me doing something stupid; what a waste that would have been. Like I have said elsewhere when I was diagnosed with COPD ( Chronic Bronchitis and Emphysema) it was like being given a death sentence; I know that it effects people differently, I had a colleague, when he was told he had COPD. He started cheering he said at least he had a disease that he could spell. Even though I had to wait 4 months of pure hell little did I know how my life was going to turn round to what I have become today. that is someone who goes and speak on COPD, Pulmonary Rehab, Breatheasy, long term disease the Expert Patient Program, to anyone who invites me to explain that there is life after being diagnosed with a long term problem. What we need to do when we are diagnosed is make just about the most important decision in our lives and that is. Are we going to suffer with this disease for the rest of the life that we have left; and yes after my experience of that it wasn't going to be a long life OR are we going to live a good quality of life and it is a really good life and a longer one. We may need a little help at times i.e, Pulmonary Rehab, Breatheasy, The EPP; but I can say with all honesty that I am having the time of my life; the only thoughts coming out of my head are positive ones. If I can help anybody to live that sort of life then I am willing to give all my time up to go and help them. Why because someone gave me a second chance of life. Thanks. Geof  the miner.

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Alistair replied on 04-27-2009 11:06 AM

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 Dear Geof,

Welcome to the forum, and thanks for posting such an inspiring introduction.

 We hope you will find this forum a helpful and informative support resource. To begin with, the Support Forums section will help you get started, and you can read about and get to meet other forum members in the 'Welcome' section, where people have posted about themselves.

 Alistair

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Geof the Miner replied on 04-28-2009 5:43 PM

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Hello Margaret. I would like to confirm what Eileen said about their group's Secretary. Even though I have never met this lady in person; because of my travels I have heard plenty of her. She is more than an inspiration not only to people waiting for lung transplant but to all of us. I believe that the reason a lot of people haven't heard her name is because has I too believe in, and that is we don't want to be famous we just want to help others; but my work as only just started compared to this lady. Infact I actually sent Axxxe a blog saying that when I visit my daughter in the RAF in Oxfordshire and their group had got a meeting I would like to call in an meet this lady and her friends. I was getting somewhat worried because she hasn't replied or entered any blogs fo quiet a while. Margaret thank you for your comments to my introduction; this is what I meen when I tell people how important it is to belong to a group and yes now that I am getting used to it; you can say that this is a group that we are forming. look after yourself and I know that it is hard at times but keep trying to think and stay positive. Geof the miner. Margaret I would like very much if I can place you has one of my favourites.

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Geof the Miner replied on 04-28-2009 7:54 PM

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Hello Alistair. Thank you for your welcome it was very nice of you. I must say, the few days that I have been involved with the forum; I am enjoying it very much and finding some of the comments from other members very inspiring and helpful; in fact I find it hard to stay away from the site. I have just been elected to the position of secretary of this other group the Positive Patients Support Group (PPSG). They were some people with different problems, some with COPD, some Diabetes 1, Kidney transplants and lots more; but all have things in common. They made the right decision when they were diagnosed and that was not to let their problems stop them living a very good quality of life and helping others to do the same. They started by attending the Export Patients Progam; when the course finished they realised how their lives had changed; but didn't want to go home and start living the new life, they wanted to help other people to find the way to enjoy life round their problem, so they formed this group PPSG. I came across them when I completed the EPP. I was asked if I would give a talk on the last day; on finishing this talk I mentioned the girl who had won 2 gold medals in swimming from our town Mansfield + the lad who was handicaped and won gold. I said to the group what does it show you? It shows that life is not about disabilities it is about having ability and I knew that I had thought of this saying myself. I then was given a leaflet about this group and what was their Motto on the back; non other than Life is about Ability not Disabilities. That was when I realised that genuine people who wanted to help others; thought the same thoughts, so I joined That was 7 months ago now I am the secretary Something that I have never done before And we have had a meeting and I have a load of minutes to type up; but and the main reason for this long story is. I can't get away from this forum. Yes that is how much I am enjoying it and what it means to me. Sorry for the Epic. Thanks. Geof the Miner.

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Geof the Miner replied on 05-01-2009 4:59 PM

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Hello Jeanette. I too had terrible habits, when I was young which seems to be getting well out of my memory span; I too rode a motorbike, I believe that it was a Norton Dominator 8 8 model 500 cc. I used to have to put it on the stand in order to kick it up. I too smoked very heavy at the end it was somewhere between 60 to 80 Park Drive a day I was told that if I didn't stop I wouldn't be here when I was  40years old, even though I didn't believe them I carried on. Then in 1983 I was smoking a cigarette and for some reason it tasted horrible I put it out and honestly haven't had one since; everyone used to say if Geof can stop anyone can. I must accept that it was hard but it was a lot easier than I ever imagined it to be at first I kept out of the way of the smell of other smokers. The money that I had been spending on cigs I put in a glass sweet jar, when it was full I went to pick the jar up the bottom fell out coins all over the place; but one thing that I can say it payed for my holidays' each year and a lot of the bills. I don't put the cigarette money away now but it is similar; what ever change I have in my pcket now goes in a tin and our holiday's are paid for and bills, so it does give you some incentive to stop. So I hope that you are an ex smoker now. If only we believed those announcements that smoking were bad for you. look after yourself and bless Geof the Miner. By the way I am 67years now and have been stopped 26 years.

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Mick replied on 05-01-2009 7:25 PM

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Hi. Geof - I'm Mick the Ex-Paramedic - Sitting here gasping as usual and lucky to have my Partner Sheila in full support and by no means critical of my  previous smoking and abuse of my body. I have severe C.O.P.D. (Less than 20% lung function and CO2 retention which is , at the moment, too severe for O2 therapy. I have been recommended for Pulmony Rehabilitation and continue on - Salbutamol, Spiriva Respimat, Fruesomide, Symbicort 400/12 and Prednisolone and Antiboitics when needed)  I also use a BiPAP machine at night and when needed in the day (Usually in the afternoon). Problem being, of course, being a Paramedic by profession, I am fully aware of the medication and problems expected as I have dealt with them with other people all my working life  (32 years on the Ambulance - 12 as an advanced thoracic Paramedic). If only one could turn back clocks!!       Good luck - Mick

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SusieQ replied on 05-01-2009 11:57 PM

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Hi Mick,

Sorry you cannot have LTOT - do push for Pul Rehab as it will make you feel better (honestly it will) and, in any event, you will need it after drinking all June's beer!

Sue

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Geof the Miner replied on 05-03-2009 11:30 PM

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Mick, I have to agree with Sue about Pulmonary Rehab. I was diagnosed October 2006 most of my treatment changed to virtually the same as I am on now; probably the only changes are Salbutamol to Briconyl and Spiriva Handy mat with the capsule to Respimat anyway none of these in 2006 didn't seem to be helping me. I still wanted to die and yes I was self diagnosing and has I have stated somewhere already I do believe that Self diagnosing brings the end of life to so many of people who are suffering with long term problems like COPD. That was before Pulmonary Rehab was even thought about; some people are still going the same now. I have also said before that if Rehab hadn't come when it did then I don't think I would have been here now. It is like Shibley and Sue have mentioned Rehab is not just about exercise; it is about all the other events that you start experiencing ie about making friends with people with the same problem as you; so now you are starting to talk to people on a level playing field. It was the first time that I realised that there was a new life out there that was worth living; that was something that I hadn't had in over 4 years . I said on my first Post don't get me started on Pumonary Rehab. There is something else to mention I don't know if we are allowed on here and that is the Expert Patient Program so I will leave it for now. The main thing for now is for all you people who hasn't been on Rehab is for you to get on like Yesterday. Thanks. Geof the Miner. Good luck to you mick.

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Stacey replied on 06-25-2009 8:05 PM

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Thanks June.  Thought I bookmarked this forum but its taken me ages to find it again!

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ChristineF replied on 06-26-2009 5:16 PM

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Thanks for the welcome, June. (I might have answered this on another thread.......)Bear with me, it's like wading through treacle, but I'll get the hang of it eventually! Looking forward to interesting talk, and also a laugh.  Hope the weather is better for most of you than it is in Northumberland at the moment.  Just a thought, I couldn't find a forum for fibrosing alviolitis, or pulmonary fibrosis as it's now called. Maybe I'm not looking properly? ChristineF

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Trish replied on 08-01-2009 8:20 PM

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Hi

My name is Trish, I am 47, divorced, with a son aged 20 . I live in Manchester. I normally live on my own with my dog but by son, who is at University in Manchester, is in between flats at the moment, has come back home until September. I do love him very much, but forgot what a mess he leaves behind him!!!!!!!!!!!!!!!

I have COPD and Bronchiectasis. I am waiting to be put on the waiting list for a double lung transplant. The consultant says my own lungs are probable ok for another 3 to 4 years.

As with the rest of you I can't do very much most days, but I try to do as much as possible, I know the exercise is good for me. I read a lot, mainly thrillers, John Grisham, James Patterson and Lee Chiid being my favourites.

I am starting an Open University course in October, I will be studying Politics. Not sure now, but it seemed like a good idea at the time!!!!!!!!!!!

I have read the posts on most topics and you all seem like a friendly bunch with lots of advice and support for each other.

Hope to speak to some of you soon

Trish

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margaret1 replied on 08-01-2009 11:02 PM

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Trish:

I have COPD and Bronchiectasis. I am waiting to be put on the waiting list for a double lung transplant. The consultant says my own lungs are probable ok for another 3 to 4 years.

Hya trish...will your transplant center be the freeman  newcastle?....i have been in there for assessment....my problem is my age ...i am 63.....over 60 it is a quite risky op.....so at the moment we have decided that as long as i have some kind of life to keep on till i really have no quality of life at all....and then i will go on the list...one of the tests of this is if you can speak in full sentances......i think this will be the last thing to go with me because i have been told i can probably speak under water...(i know i never stop talking)

you will love your course...i became a full time student at 44....the year my oldest son graduated and my other 2 sons were at year 2 and year 1...i was afraid at the time that i would be left behind by my family....my son was the first ever in the family history of his dad and me to gain a degree

oh i do remember the student holidays ...my sons used to give up their flats at the end of june....to save paying rent...and live at home with all their rubbish...and no money...till the end of september...they often had some poor waif and stray who couldn't go to their home..so i had them to feed as well.....20 years on i am still friends with many of these and most of them have done well in life...and i am honorary grand ma to loads of lovely kids.....i wouldn't have missed those times for a million pounds

i am also a thriller reader...i also like Stephen king and Ruth rendell....but i will read anything but romances and cowboys...have you read 'the time travelers wife?'...its coming out on film next week and i am interested in how they make the book into a film..if you haven't read it give it a go...you see what i mean i even talk too much on here

we seem as though we have loads in common...and if the freeman is your hospital i only live 12 miles from there in sunderland

hope we can chat again......i hope i haven't bored you

take care cheers Margaret

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Wayn Snook replied on 08-09-2009 11:25 AM

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hi, my name is wayn i am 33 yrs old and was diagnosed with copd emphysema 2 months ago. I am a family man with 4 young children under the age of 10 and am finding it difficult to firstly come to terms with my illness and secondly cope with it. i have been tolde by my doctor that i am quite lucky to have catched it early, i am on one inhaler and have gone from 90 fags a day to under 10 but am determined to quit.

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margaret1 replied on 08-09-2009 12:49 PM

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hya Wayn......Welcome......i know the feelings you are going through at the moment....i have been there

your doctor is right....i wish i had had an earlier diagnosis.....people  can have emphysema and not know.... there are 4 levels...mild...moderate...severe..and end stage.....lets hope you are at the mild stage......if you are than the outlook is good......STOP THE FAGS.....there was no one who enjoyed a smoke more than me.....i was diagnosed as severe 10 years ago (30% lung capacity)....kept on 'sly smoking' for a few more years and i went into the end stage (15% lung capacity)...for 5 years i haven't smoked (it takes me all my time to breathe)   but the good news is my lung capacity has stayed the same.......i am not preaching to anyone about the fags.....but i believe that is the reason that i am still alive

there are lots of things that help....stuff off the doctor...i used the chewing gum and lozenges.....it took away the 'edge'.....its worth it for your children's sake at least...i am sure that they would like their dad to be around for a long time.....and they would like to see you fit and healthy i am sure.....but most of all do it for yourself....when i look back i think  'what an idiot i was'......and when i see people of my age living a full and active life i wish it was me

try and read some of the stories on this site.....there is a good bunch of people out there......quit smoking all together......i used to cut down...but i always built up to a packet a day and always made excuses....(i lied to myself)

why don't you use this site as a daily quitting diary.....be honest every day...i am always reading the new posts...i will support you and i know that the other members of the forum will too

first of all  stay positive.....enjoy your family.....keep on posting to us and stop the FAGS

sending you best wishes...cheers Margaret