Hello - New members please introduce yourselves here

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Tru replied on 10-18-2011 1:53 PM

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Hi Bella

Welcome to the forum.

You could ask your doc to refer you to a respiratory specialist where you will get thoroughly checked, I would definitely do this if you find your breathlessness gets any worse, or now if you are finding things difficult.

You say you are pretty fit, walk the dog and go to the gym regularly, continue with this as it will stand you in good stead, exercise your cardiac and respiratory apparatus.  The other thing you can do is ask your doc for a exercise prescription, this you can take to the gym and get specific instruction for your health problem.

People with a lung condition need to take extra care of their lungs, not smoking, passive or otherwise.  Avoiding contact with others wherever possible, if they are infected with a cold or the flu virus, get an annual flu shot and later if you are diagnosed with a lung condition a pneumonia shot too.  Eat healthily and generally look after yourself.

Did you check out BLF's pages from here:

http://www.lunguk.org/you-and-your-lungs/living-with-a-lung-condition

Lots of information for you to browse at leisure.

Also do phone the BLF helpline for further guidance on what to do in your situation, they can often point you in the right direction for getting further help.

Keep up the exercising and good wishes.

Tru

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Tracey Newton replied on 10-18-2011 2:17 PM

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Hi Bella

Welcome to the BLF forum.

It can be difficult when you are feeling unwell but not having a confirmed diagnosis.

At the BLF helpline we have experienced respiratory nurses who would be more than happy to discuss the problems you have been experiencing - they may be able to direct you further on this problem.

Exercise is almost always beneficial - just need to be careful you don't overdue it and check with your doctor.

If you are unhappy with the service you have been getting from your GP/Consultant you can always ask for a second opinion or possibly change GP's.

I hope this is helpful - please don't hesitate to call us on 08458 50 50 20 - 10am - 6pm Mon - Fri.

Best Wishes

Trace

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BellaM replied on 10-19-2011 6:12 PM

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Thank you for your replies. I will call the BLF helpline.

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David replied on 10-20-2011 11:16 PM

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Hi Bella

Welcome to the site,

Please phone the helpline but as you seem fit and able, ( keep OFF the cigs) regular breathing excersices can produce results in early chest / lung problems.

Breath through nose and exhale through mouth slowly

But please DO goto your GP and ask for a SPIROMETERY TEST  to clarify what your level IS

all the best for the futre ( keep us all posted)

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northender replied on 10-23-2011 7:01 PM

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hi my name is paul i have copd i have two inhalers spirva and a blue one .I am 57 years old  First time on here  i quit smoking in feb because i was scared after i was told  that i had copd  yours paul

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Tru replied on 10-24-2011 10:25 AM

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Hi Paul

Welcome.

You did the best thing quitting smoking.  Well done.

If you are finding the medicines you are taking are not doing the job or if you feel you are becoming unfit, do ask your doctor for referral to a pulmonary rehabilitation course or LEEP as it is sometimes known.  Lung, exercise and education programme.

There's loads of information already in the forum, so do take a good look around,  start a new thread for anything else you want to discuss or ask about.

Good wishes

Tru

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rita replied on 10-24-2011 5:27 PM

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Hi Paul and welcome

Good on you for giving up the cigs, very hard thing to do for many COPD-ers!  Whilst it might make you feel absolutely brilliant at least you will have put a stop to the further degeneration of your lungs.  Ideally if you can manage to keep as active as possible that too will help.  Have you asked your GP if there is a local Breathe Easy Group in your area? or have a look on the front page of this website for a listing.  The groups tend to meet monthly for both social, educational and sometimes active support and you will get an awful lot of information from fellow patients.

If you would like any questions asked of any of us please do create a new thread and we wil do our best to answer or have a chat with the helpline.

Good luck and we look forward to hearing from you

rita

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carol replied on 11-03-2011 9:02 PM

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Hi I have just joined so am very much a novice, but reading your note did give me a bit of hope I am a 55 yr old female with a similar story to you, but at present I am in dark despair as I am bringing up constantly mucus/fluid and am really scared, I have just finally had a ct scan to find out what is happening, I have been like this for nearly a year and it has just got worse. I hope I can find some help on this site xx

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markpilling replied on 11-04-2011 10:41 AM

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Hello Carol

Welcome! - you will find lost of support and infomation here.

Please don't feel alone - why not give us a call on the Helpline 08458 50 50 20 - we can try and explain what's happening - and as you get further along the process of finding out more - both the Helpline and the community will give you all the support and information we can.

So please call.

Thanks

Mark

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Tru replied on 11-04-2011 11:11 AM

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Hi Carol

So glad you have joined us here.  Welcome

I am so sorry you have been experiencing such discomfort for so long without any relief, it is difficult to stay out of the dark despairing when having to cope with such difficulties on your own.  Please please do contact the helpline for more advice and suggestions about how you may be able to help improve things.  Having had the ct scan will help with diagnosing what lung condition you have and the good news is you can get the best medicine to help treat the symptoms of your discomfort once diagnosis is clear.

 A year is a long time waiting to know what the cause of your symptoms, it is more difficult coping without a diagnosis and the right medicine, hopefully it won't be too long now before you can start to stabilise a little once your ct scan results are known and correct medications prescribed.

Keep in touch and try to be hopeful, take every opportunity and seek out any help you can get from any source.  The helpline will help you with that.

Do keep in touch, there are many who can offer understanding, help, support and encouragement.

Good Wishes

Tru

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Lorraine-May61 replied on 11-22-2011 4:30 PM

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hi geof  my name is lorraine i am 61 years old and smoked for 40 years of my life,  i used to go to breath easy and i do agree they are really good groups but one of the girls that attended the group who had done so well in the gym classes we attented was making oplaned  wt shopping with her husband just dropped to the floor and died  i thought she was a really nice person and  of course a lot of the members were upset  i stopped going i have thought about going back again  but now i have trlouble wjth getting up the hills and i have to go up a hill to get to bus stop  i am a widow so getting a taxi is out the questiion well geof it as been nice talking to you and hope to hear from lorraine

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Linda B replied on 11-23-2011 10:04 AM

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Sorry, I posted this in the wrong place. I see I should have posted it here.

I am a new member and I just wanted to introduce myself. My name is Linda and I was diagnosed with stage 4 lung cancer in June last year. I had chemo and radiotherapy to shrink it and in December I had the top lobe of my right lung removed. Because the tumour had attached itself to the chest wall I also had to have 5 ribs removed.

I have also suffered from COPD for some years. I am considered cured and feel very lucky. I feel I am doing really well. I am a huge believer in positive thinking and make a huge effort to be positive but it has left me a bit paranoid about every ache and pain and lump or bump. I lost my husband to throat cancer last year and I think this has added to my paranoia.

I'd like to be in contact with others who have had the same or similar experience. I have now completed a year of check-ups which I feel is a milestone and I don't have to go back for 6 months as opposed to 3. Another milestone!

Linda

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Tru replied on 11-23-2011 12:02 PM

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Welcome Lorraine and Linda.

You have posted in the right place Linda.

I'm so glad you decided to join us here.  I'm sure you will find someone who has had similar health experiences and also feel sure with your own experiences you will be able to offer help and support to others here.

Have a good look around the forum, use the forum search box (top right) if you are looking for something particularly, or start a new thread if you want to ask something specific.

Enjoy your time here.

Tru

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Morty replied on 12-02-2011 10:39 AM

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Hello eveyone, my name is Dawn and I'm 41 years old. I was diagnosed with chronic brochitis 4 weeks ago after 2 years of consistently going to my doctor for steroids. I have been treated for asthma over the past 7 years and now they tell me this isn't the case. I've had all the usual tests and because I'm a recent ex smoker (smoked for about 20 years) and given my age they believe I have COPD. I'm still going through the exploratory medicinal route which I have to admit is quite scary as it's the first time I have been subject to side effects with any form of medication. The frustration around it all is that some days my breathing is fine and others it's not so having to come to terms with social changes has been a significant change. i don't know what to expect moving forward as my GP gives me no confidence at the moment. Had a blood test just last week to check how well the medication is working (uniphyllin) and then see where I go from there. I'm really grateful for this forum as this has been a really scary process and felt quite alone but now know I'm not.

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Tru replied on 12-03-2011 11:39 AM

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Hi Dawn

Welcome to the BLF forum.

I hope you can get your medication sorted soon and that your doc can prescribe something that suits you better.  I'm glad your doc is monitoring you with regular blood checks.  Even if these show ok, I'd still mention to your doc that you want to try an alternative medicine if the current one is causing you too much discomfort.  You could also ask to be referred to a respiratory consultant who can check your condition more thoroughly than a GP can.

Do phone the BLF helpline for more advice of these things too.

Enjoy the forums and good luck with all your future tests and medications.

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handel evans6 replied on 12-06-2011 6:56 PM

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Hi my name is handel and i have c o p d. i am not sure if i am doing this right lets hope so. i am looking for someone to talk to with c o p d like me

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Paul Conibeer replied on 12-07-2011 12:37 AM

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Hi all

Just a quick intro i'm 33 and had asthma on/off my whole life it has come and gone over the years but ago 6 years ago it came back with a bit of a vengeance and nothing the drs did seemed to help i had a good asthma nurse at the time she pushed to get me a referal to the specialist at our local hospital and to cut a long story short i was diagnosed with brittle asthma/copd and sleep apnoea shortly afterwards i get frequent flare ups and chest infections which as im sure you can all relate is really no fun
I have a few other health problems too but my biggest obstacle is without a doubt my lungs im single and live alone i have a few pets that really keep me going cats,birds,chinchillas,snakes and fish lol im officially at full capacity now and luckily for me have no known allergys or triggers that are animal related though ive always maintained that any detrimental effect they might have on my health is far outweighed by the companionship and love that i get in return so id keep them no matter what!
Medication wise i take seretide.respimatt,ventolin and monteluskast for my asthma and copd and a few other things for other various problems i shant bore you with details i look forward to getting to know everyone many thanks for having me

Paul

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DorothyS replied on 12-15-2011 2:19 PM

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Hello i`m Dorothy i`m 52 and i live in Scotland. Just recently found this forum and have found the posts very interesting. I was diagnosed with  mild emphysema at 28 years.This was due to childhood asthma  as i have never smoked.I have now progessed to severe stage copd, Ltot 2lpm and all the usual meds etc and as i`m a C02 retainer i use Cpap st night.I manage to get around reasonably well some days better than others, this time of the year not so good as its very cold!

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CarrieMe replied on 12-16-2011 2:33 PM

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Hi Dorothy and welcome to the Forum.

I too live in Scotland and have COPD, though thankfully not severe enough to need oxygen (yet!!).

The Forum's a great place for information, help and support as is the Helpline.

Look forward to hearing more from you.

Carrie

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Lorien replied on 12-16-2011 4:54 PM

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Hi Dorothy,

I'm on the border with Scotland and, as Carrie said, I'm luckily not on oxygen yet.  Welcome to the forum. xx

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Tru replied on 12-16-2011 10:12 PM

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Hi Dorothy,

Welcome here and glad you are finding the forum of interest.  Lots of us here with COPD and people with other lung conditions too.  We all share breathing difficulties and can understand the difficulties that involves.

This time of year is always more difficult with the colder temperatures and damp conditions, if you haven't already do check out BLF's page (lungs in cold weather):

http://www.lunguk.org/you-and-your-lungs/you-and-your-lungs/lungs-in-cold-weather

Look forward to seeing you more around the forums.

Tru

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Tru replied on 12-16-2011 10:16 PM

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Welcome Paul

and welcome again Handel

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DorothyS replied on 12-17-2011 1:30 PM

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Thankyou for the welcome and Carrie and Lorien also. This is a bad time of the year for me, as the cold air catches my breath i tend to stay at home more than i would like.

  Bye  for now

   Dorothy

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Lorien replied on 12-19-2011 3:38 PM

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Hi Paul,

Welcome to the group.  It must take a lot of effort to take care of all those pets, I really envy you.  I used to have a lot but down to just one dog now.  Would love to have more but the effort these days is too much... I would absolutely love some lizards!

Best wishes,

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essex1 replied on 12-19-2011 6:08 PM

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Hi everyone, i was so pleased to find this site. At last i don't feel like i am alone with my COPD and the pain it causes me every hour of every day. I have found the lack of care on the pain side terrible, does no one in the medical proffession care???? I do wonder my GP changes the subject, my consultant avoids the questions when i ask why i am in so much pain. I get so down !!!

Sorry to moan off, will try be less negative.

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HazeGibbs replied on 12-20-2011 8:48 AM

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I'm David.  I was diagnosed with COPD 9 months ago.  I can't walk far (about 20 yards) and have various inhalers, including spiriva.  My main problem is getting out and about.  I've just returned to UK to be near family - I had previously lived in Western Australia, having emigrated there 18 years ago.  The family are at work all day and presently on holiday abroad.  I don't have a car so getting around is difficult.  My other problem is trying to stop smoking.  I am 74 so a big move has been disorientating and I turn to 'fags'.  I wonder if anyone else has these problems and can offer advice.

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Tru replied on 12-20-2011 12:58 PM

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Hello David

Welcom to BLF forums.

One thing we all find difficult when newly diagnosed is stopping smoking, it is one of the most important things we can do to help ourselves, our lung health, our ability to be more mobile, to breathe easier and to slow the progress of COPD right down.  The other thing which I personally feel is another essential undertaking is attending a pulmonary rehabilitation course or LEEP course.  Your GP or consultant can refer you.  The course, empowers us to help manage our COPD much more successfully so that we can have a better quality of life.

I've been diagnosed around 6 years now, at the time I could barely walk or breathe, I stopped smoking and attended the PR course, I have taken on board most all that is taught on that course and now I am breathing easier, exercising and walking out longer and am able to do so much more now.  I highly recommend both stopping smoking and the PR course.  I feel the sooner you access the PR course the better it will be to help you keep as well as you can and help to keep your COPD stable..

Regarding the smoking, have a chat with your respiratory nurse or doctor, there is likely a cessation clinic you can attend for advice and support.  Its not easy stopping smoking, but its something that is essential to preserve lung health.

Readjusting to UK after a long stay away is not easy, I can understand that, I did it myself a number of years ago, it does take some getting used to especially the winter months, but you will love the springtime and summer months I am sure.

During winter you will need to take extra care of yourself and your lungs to help avoid getting a lung infection.  Check out BLF's page on top tips:

http://www.lunguk.org/you-and-your-lungs/you-and-your-lungs/lungs-in-cold-weather

I hope soon you can access the pulmonary rehabilitation course and that before long you will be walking out easier and longer.

Any times you want some tips help and support on smoking, just post another thread and I am sure other members will be able to help out with the process.

Also you may want to get some advice from the BLF helpline, about stopping smoking, about COPD, about help and support that may be available to you.

Good wishes and do keep in touch.

Tru

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Tru replied on 12-20-2011 1:07 PM

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Greets essex1

So sorry you are experiencing so much pain, has the consultant sent you for a cardiac check yet I wonder, that's something that is usually included when initially diagnosed and later should other symptoms arise.  Do start another thread called Pain management with COPD to discuss that subject, I feel sure you will get more help with that here on the forum, also from the BLF helpline.

Take good care and hope soon you can get to manage the pain more successfully.

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Donna replied on 01-17-2012 1:00 PM

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Hi there my name is Donna I am 25 years old and have a number of health problems including moderate asthma and severe obstructive sleep apnoea. I am hoping to make friends and understand how these conditions affect others and how they manage to enjoy life.

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Tracey Newton replied on 01-17-2012 1:19 PM

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Hi Donna

Welcome to the BLF forum.

There are lots of people with various lung conditions and i'm sure you will get lots of help and support here.

You can also give us a call at the BLF helpline - 08458 50 50 20 Mon - Fri -10am - 6pm.

Best Wishes

Trace

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Tru replied on 01-17-2012 2:11 PM

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Hi Donna

Welcome to the BLF forum,  I don't have asthma but do have emphysema also sleep apnoea diagnosed a few years back now.  I think most here will understand and can offer you friendship, help and support, we most all have breathing difficulties and I personally do manage to enjoy life as do many others.  For me, I believe the key is regular exercise, good diet and of course avoiding smokers and people who are infected with a cold or flu symptoms, also doing things you enjoy the most.  Summer time are the better months for me as am able to get out and about more, winter time I tend to do all the necessary things to help preserve my lungs and health.  Have a good look around the forums I'm sure you will find some things of interest. Don't hesitate to start a new thread if there is something specific you want to ask, the forum search box top right is also useful.  The BLF helpline is a great source of information, help and support too, as Tracey mentions in her post above.

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Helen replied on 02-02-2012 1:10 PM

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Hi

Just wanted to introduce myself,  I've only ventured onto the forums once so far so from now on in will try and do better!

I'm Heych or the more formal Helen if you prefer and am a Counsellor and CBT practitioner here on the BLF Helpline.  I'm in the office Monday to Friday and would welcome the chance to speak to you either by telehone (08458 50 50 20) or via the email enquiry service - if you could mark any emails for my attention and I'll reply as soon as I'm able.  

The counselling service is available for use as a drop in service or a block of appointments can be booked, the choice as they say is yours ,  anything - niggles or concerns... big or small can be talked about in confidence.  

If you would like further information on the counselling service, or my qualifications /experience etc please just ask.

Take care 

Heych

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Tru replied on 02-02-2012 7:41 PM

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Hello Heych Welcome

Thank you so much for posting here, its appreciated, and thank you for all the help you do.

It's really good to know that we can access this counselling service as I know there are times when we all need that extra bit of support.  I do hope anyone in need will not hesitate to make contact as I do feel this is a very valuable service.

Good wishes

Tru

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Lou replied on 02-04-2012 11:16 PM

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Hi,

I'm new, my mum passed away on the 10th Jan due to COPD.  Althiough she had suffered with it for quite a few years, she went quite suddenly, we, the family, was not expecting it at all,

Lou

x

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Tru replied on 02-06-2012 8:28 PM

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Hi Lou

Welcome here.

So sorry to hear of your recent loss Lou.

Tru

x

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rita replied on 02-06-2012 10:00 PM

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Hello Lou and welcome

I am so sorry to hear your sad news.  Sometimes it is difficult for those of us who suffer from COPD to actually discuss anything about it with our loved ones.  I suspect we think they wont notice and will therefore not worry so much about us, which is totally wrong and perhaps selfish of us; I really don't know.

Might there have been anything else that caused the suddeness?  Perhaps her GP can talk to you in more detail ?  Might be worth asking.  There is also a counsellor - Helen - available through the helpline number.  If you call they will call you back when she is free.

Once again my sincere condolences on you and your family's loss

Thinking of you

rita

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Jennifer replied on 03-08-2012 2:29 AM

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Hi,

I'm Jennifer and I'm 28 years old. I have scarring on my lungs which has reduced my lung capacity and asthma. I take nebulizers and inhalers each day, and look forward to meeting people who are in a similar sitation to me, as I don't know anyone else with a lung condition.

Best wishes,

Jennifer

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Tru replied on 03-08-2012 5:32 PM

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Hi Jennifer, welcome here.

You've come to the right place as most all have a lung condition here and those who don't are caring for someone who does.  We have many forum members with asthma and other lung conditions.

One thing you can be sure of here is meeting people with breathing difficulties.

So glad you decided to join us Jennifer, do start a new thread if there was something in particular you wanted to discuss.

Great to have you with us.

Tru x

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misterdee replied on 03-08-2012 7:26 PM

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hi i,m david, new on here and not to familiar with pc,s. 65 years old, pf sufferer for 5 years caused by bad case of legionairs disease use 6ltr 02 most of the time, deteriorating  now,  have been asked to go for tests possible transplant, am very very uncertain read a lot of stuff ,finding it hard to proceed with it  big decision to make, i would be obliged for any thoughts or experiences.      regards dave

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Lorien replied on 03-09-2012 2:01 PM

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Hi Dave,

I'm in the same situation regarding transplant.  It was mentioned to me 'for in the future' but it's been brought up again this week and I've been referred back to the consultant.  Like you, I don't know enough about it to make an informed decision, wish I knew more.

How did you catch your Legionnaires Disease - in hospital?

Best wishes,