I NOTICE THAT SOME OF YOU LIVE OUTSIDE THE UK. I REGRET THAT I CANNOT SUPPLY YOU WITH A DVD.
ANNE R.
I am aged 66 and was born in Yorkshire. I am married with 4 children and 8 grandchildren and was diagnosed with COPD in 1990.
I’ve had lung volume reduction surgery in1997 but still became an armchair vegetable by 2001. I was fitted for an oxygen concentrator in 2002 and attended rehab in 2005. I joined the Eden walking group 2006 showing great improvements in mobility and in general health by 2007. I use ambulatory oxygen on my walks. You can read my full story on WWW.EMPHYSEMA-COPD.CO.UK under PATIENT/CARER STORIES. But if you would like to write to me on Please do.
PETER
"I'm now 69 and feel 29 but, of course, cannot do much. I used to play a lot of sport including a form of motorcycle racing which used alcohol, and nasty chemicals for fuel from which the burnt fumes didn't help, as well as some smoking and malnutrition in WW2 . My father died from emphysema and bronchitis so I guess it might run in the family.I was first breathless in around 1994. I had heart surgery for Mitral valve leak in 95 in Guy's Hospital. Not a success. I was told by the surgeon that "You have long thin lungs and they are emphysemic." I was placed on a variety of heart drugs. One caused serious sunburn if I went out in sun! So I quickly binned that one! Tried various 'puffers' and settled for Ventolin and Atrovent. I was never shown how to use these until recently with a spacer.
But I refuse to be downhearted and keep an interest in my Apple Computers watching sport and have always been interested in jazz. Consider I am in between moderate to serious COPD (if there is such a place!).
If you would like to write to me please do. John will pass on the message at copdfriendships@copdfriendships.co.uk
David
I am a retired microelectronics engineer consultant with COPD. I have spent most of my life working in the electronics and product safety industries - from very bottom to very top end of the business scale. This experience has been accompanied by asthma in its periodic and now chronic form since I was 17. Apart from a lifetime of various NHS treatments (if you can call some of them by that name), I have attended the Buteyko (Russian) course on how to live with asthma not using any drugs. It works, but only partially and not for everybody. Good for help in spasms Now I am a free-lance journalist writing humorous articles for magazines.
I should be very happy to correspond and compare notes with anyone having asthma-COPD.
My e-mail address isBoscon@metronet.co.uk
SHARKEY
I joined the Navy at 15 in 1958 and my first ship after training was HMS Ark Royal. That is where I was exposed to the Asbestos Dust. I was then 17, still a minor in fact, but there was no protection offered, even though the Government had known of the danger since 1898.
I served in the Royal Navy as an Engineer, and although I never actually worked with Asbestos, 30 years after leaving the Services(1963) and only having served 5 years, developed and was diagnosed with the first signs of Asbestos Disease.
In the first place the effects were minimal, breathlessness on severe exertion. As time went on the effects got more serious. I developed High Blood Pressure and in 1998 went to my GP who was trying to get the Blood Pressure under control. She sent me for Blood Tests and when the results came back told me my Platelet count was high and put me on Aspirin. In June 1999 I suffered a Brain Bleed and ended up in Hospital with a very badly affected left side of my body, and serious balance problems.
During the next 3/4 years I discovered reference on the Internet about the potential dangers of Aspirin and uncontrolled Blood Pressure. It was beginning to look as if my GP had slipped up somewhere. I realised that she had mistaken the Platelet Count with the Heamoglobin, and should have referred me to Consultants
The condition Polycythemia which causes increased Heamoglobin can be caused by Low Blood Oxygen, which causes the bone marrow to make more Heamoglobin which increases the Bloods viscosity. Unfortunately the condition can also cause High Blood Pressure and this coupled with the increased viscosity put a strain on a Blood vessel in my Brain which popped.
I now am on more or less 24/7 LTOT with Liquid Oxygen when I go out.
If you would like to contact Sharkey please write to me.
MOIRA
I live in Scotland and I’m aged 61 copd and have a rare blood disease. I’m just out of hospital with a 4 day flare up that’s the first in 8 months and i think i flared up as a visitor had a bad cold. I stopped smoking 12 months ago. I smoked nearly all my life. I’d love to hear from other people with copd and how they cope.
EVE
I'm 57 and was diagnosed with COPD in 2001, which added to the fact that I also have Chronic Fatigue Syndrome, made the going a little tough.
After 3 exacerbations in 2 years, requiring hospitalisation, during 1 of which I developed a hospital acquired infection called acinetobactor, I was told I now have Cor Pulmonale.
Last year my consultant sent me for a CT scan, because my lung function tests showed a drop of 18% in the previous year, and I was told I have "nodules" in my right lung, but they were not cancerous – the result of constant coughing & repeated chest infections. I've graduated to using a nebuliser, but am finding that every day tasks are getting harder, but life has to go on, and I refuse to let it get to me.
I would love to hear how other people cope.
My email address is littleoldmum@yahoo.com
VICKY
Hi everyone. I've just been diagnosed but must be in the early stages as i feel no shortness of breath. i smoked a pack a day for about 10 years, but quit for 10 years, just started back to smoke about 3 years ago and only 5 cigs a day. i worked for 16 years as a chemist in a chemical laboratory and breathed in many dangerous acids, fumes and chemicals. i have a cough that usually is productive, but sometimes not. when i can cough "it" up it is very thick and yellow coloured. I have quit smoking those 5 cigs effective April 8,2007. I'm scared and don't know what to expect. Any support would be greatly appreciated.
I am also severely allergic to my cats and just started taking shots about 3 years ago. They are indoor cats and are my family - the three of them. I can't give them up as they are my life. never married, no kids. The GP said i should get rid of my cats but i can't. They keep me calm and are company for i live alone. so anyone who reads this please help me understand what is happening to me.
my email address is thunder.rainy@gmail.com
MONA
I am a 59 year old woman with COPD. I have had it for over ten years now and my doctor tells me I am in end stage, of course we all know he is wrong, there is no end stage. I am on oxygen 24/7 and have the TTO system.
Hope to hear from someone soon.
My internet address is themama1@aol.com
BABS
I'm Babs a 59 year old living in Essex, married, two children and a mad dog.
Also a life time sufferer of Lung Disease. From a baby I had Asthma then of course in the early 60's I did what most teenagers did and smoked. I was diagnosed with COPD in 1983 at the age of 35 and still carried on smoking. In 1997 I was given an ultimatum , "Give up Smoking or forget about flying to US". I stopped as I wanted desperately to see my BIG brother and to celebrate my 50th in US.
Nearly 10 years on I'm now on O2 16 hours a day and so wish I'd give up earlier. I attended rehab in 2000 and found my breathing so much better, but of course like most people and exercise I never kept it up.
I have a great relationship with my Pulmonary Rehab people and they have let me go back just to fit in the exercise again.
I'd be happy to share thoughts on COPD with anyone who cares to.
My address is
ELLEN
My name is Ellen I live in Scotland and was diagnosed with c.o.p.d in 1994. My doctor did not tell me much about it so I was ignorant about it. I wasn’t told it was down to smoking so I carried on. It wasn’t till I moved down south that my doctor told me I must stop as I was always short of breath & my health wasn’t good, so I took her advice & did and felt a lot better that was in 2002. I moved back home as where i lived down there wasnt good as it was near the Airport & also the motorway. I was ok up till oct 2006 when i had to go into hospital as i had pneumonia & pleurasy and also had clot on my right lung. Luckily it all went ok. sadly i lost my sister to c.o.p.d the same year but she was never diagnosed and she was nearly 63. Just recently i have been put on spiriva and feeling a lot better as it seems to be working for me. My e.mail address is
SHIRLEY
Hello there, my name is Shirley, I'm 56 and live in Nottingham UK.
I was told by my GP when I was 40 that I had asthma.I was treated with inhalers which seemed to work for a while. In time I noticed the inhalers were not working as effectively as they should, so I mentioned it to my doctor, who then changed them about, but I still wasn't right. It wasn't until I moved house in 2004 to another area and had to change my doctor that something was finally done about my breathing. i was given a lung function test, cat scan and xrays, which confirmed I had Chronic Bronchitis, Emphysema and Underlying Asthma, and after a few bumpy starts I am on medication that helps me. I am using Symbicort Turbo Inhaler and Spiriva. I also have a ventolin inhaler but don't use it as much as I used to. My mum passed away with COPD Emphysema and my sister also has it.
I would love to chat to others with COPD
My email is:shirleanne10@hotmail.com
BRYAN
I am Married I have Emphysema it was caused by Breathing in Very thick Dust from when I worked in a Pottery, I have had 2 Heart Attacks and a small stroke, I am not on oxygen I am looking for nice Friends to Talk to, I have just lost my Daughter who was disabled with Multiple Aclerosis. I love Animals My E.mail is
EILEEN
I have just read John’s wonderful website and would like to submit my profile to see if anyone would like to correspond with me.
My name is Eileen and I am 65 years of age. I live in Liverpool, divorced, have a grown-up son and daughter. My mother, who is 90 and as fit as a fiddle lives with me. Wonderful and all as my mother is she does not understand my problem and how frustrating it has become.
I was diagnosed with COPD in 1999 and it was gradually getting worse and I was spending more time in hospital than at home. Earlier this year I was also diagnosed as having atrial fibrilation - guess that's how you spell it. I do find myself getting very depressed and lonely as I was always a very active person before. I was a secretary for most of my life and never thought that I would say I missed the company at work.
One of my interests was gardening but this I am no longer able to do. I have been researching my family history for almost 30 years now and this does help keep me occupied but even then one gets fed up. I am housebound most of the time although once a week I do try and take advantage of our 'disabled' bus which will take me to the Library to carry out research.
WILLOW
I am 36 years old, married with 3 children and have recently been diagnosed with COPD... or as the Spirometry nurse so nicely described it.... someone in deep doo doo! I stopped smoking in March this year and never thought I would be diagnosed with it as I seem to be alot younger than other sufferers. As you can imagine, I am pretty scared... I lost my mum 18 months ago to COPD at the age of 63. I would love to hear from anyone who can give me a good kick when I'm feeling sorry for myself, give any advice at all re: exercise and anything general at all.
best wishes
Hi my e-mail name is BUSYLIZZIE
I am 64 and married. I have bronchiectasis and asthma. I have ambulatory oxygen, and nebulise colomycin 2 million each day. My main hobby is making greetings cards for personal use and also as gifts.
E-mails can be sent through John, to be forwarded please.
JENNY
My name is Jenny and I am 59 and I was diagnosed with COPD in January 2007. My FEV1 reading is at best 61.1% which my GP tells me is mild. I have felt really depressed and am now on anti-depressants. I am not so much out of breath all the time but my chest feels tight all the time. I do get out of breath when the weather is really humid so the summer is not good for me. I am on a steroid inhaler twice a day and a blue inhaler when necessary. I gave up smoking approximately 5 years ago because I was told I had slight emphysema but was a bit daft and was still smoking socially now and then. But last October I started feeling very tired and a bit breathless so I gave up smoking altogether and have not smoked at all since then.My husband gave up smoking about 5 years ago after smoking for years and he is as fit as a fiddle. Seems that I am just unlucky. If anybody would like to get in contact with me they are welcome to. My e.mail address is jennyann.grosvenor@virgin.net.
MALCOM
My name is Malcolm, 60 years old, and live and work on the Isle of Wight.
''I was diagnosed with emphysema, COPD, and asthma 6 years ago, and it is ''controlled'' ( only just) with a Montekulast 10 mg tab. at night, a steroid, and a ventolin inhaler, and spiriva. Lately, I've been getting very breathless, and ended up in A. & E., some 2 weeks ago.
I keep busy, am doing a course for work (I am a health- care professional), and go up to Edinburgh on my course for 3 days in Jan. I would love to hear from fellow-sufferers etc... as I feel pretty isolated at the moment (but I know of people a lot worse off, in this respect).
My email address is: llimbs@yahoo.com ''
I am still only just finding out the implications of this disease - have been given three inhalers so far and am very much a novice.
TRICIA
Hi my name is Tricia. I am 54 years old and I have only just been diagnosed with COPD this week. I found this site when hunting around the net and I have found it quite helpful. I was a fairly heavy smoker but gave up 6 months ago when I could not shake a cough after having a cold. I felt really good for a few months and did a lot of walking in Somerset on holiday in September last year. However just before Christmas, I started suffering from a lack of breath and went for x rays and had a spiro test. I have been told I now have moderate copd - my readings were quite poor only just 40.3% Obviously I will never again touch another cigarette. I know I caused it but was annoyed it let me have 5 months of feeling good then came up and hit me from behind like a lead weight.
I will continue to read this site to try and gain more information, but if anyone wants to contact me, please e mail me at
TREVOR
IVAN john & others my names Ivan I have emphysema & awaiting a lung transplant I am now 50 years, I have been waiting for a transplant for just over a year. I am considering the use of ex-vivo to help me, as it will give me a further chance of finding a suitable lung match for transplantation If you google Ivan Flavell you may be able to find something of me if not just ask. I saw you john on the Tonight program & was asked myself to take part in the program sadly I had an infection and was ill in bed by the time i got back in touch with the researcher i was told that the program had already been filmed. I have been ill on oxygen for just short of ten years yet we can trace the start if copd since I was 17 years hope to hear from someone soon |
PATRICIA
Hello,
I have just found your web site after watching ITV Tonight program about Liz Dawn. My husband has severe COPD and is housebound on 24/7 oxygen. Is there anyone who would like to write to me. The Email address I would rather use for this is p.mh@hotmail.co.uk not the one I'm writing to you on. Many thanks for reading this.
VANTEE.
I was diagnosed with COPD. Emphysema ,in January 2006. I am 63, and was born in Sussex. I’m married with 3children, and live in Lebanon. In this part of the world, there is no such thing as a support group, I didn’t know what to do, or who to turn to. I had never heard of emphysema, and for several years before being diagnosed, diligently, every year had gone to have a chest x-ray, as I was a heavy smoker, the Dr would tell me the same thing ‘you have chronic bronchitis,’ he would prescribe an antibiotic, advise me to cut down on the smoking, and that would be it until the next year .But last year things changed, I realized that something was really wrong, for years I had been kidding myself that the breathlessness would stop as soon as I cut down on smoking, but it didn’t , so I found a good pulmonary doctor who at last did all the correct tests, or after reading about many cases on your site , now know that he was right .He immediately prescribed symbicort and spiriva, told me that if I didn’t stop smoking right there and then, he would not see me any more and that I wouldn’t be around for much longer anyway if I didn’t stop. It had the desired effect, I was so frightened I have never touched another cigarette since then. That month I was very ill , I think I had an exacerbation, I wouldn’t go into hospital, because I had to work, so he put me on an oxygen machine for 13 hours per day, and told me to exercise ,and not to stop working. I walk 6 km 4 times a week, and in the summer swam 2 km as well as walking, being a teacher has helped because of the time off we have, I am able to do it. For 6 months the doctor kept me on the oxygen, then he told me I could stop because I was stable, and my blood or oxygen levels, were in the nineties .It has now been one year since I was diagnosed, I have helped myself, but I would like to thank you and all the people on your site. My children have gone, so I am alone. I knew nothing, and I really mean nothing about this illness until I found you, I have had times when I have thought it preferable to be dead than go through this, but I would log on in the middle of the night, and learn a little more, and feel just that bit better, so thank you for being my secret friend and teacher All the best to all of you out there, have a good life, it could be much worse. I would love to hear from any one who wants to share views.
Contact me if you would like to write to Vantee
Hi, my name is Pete.
I am a 61year old carpenter and boat builder.
When younger I was extremely strong, fit and well, worked all the hours given me, and was, of course, indestructable.
At age 42 I picked up a viral Myocarditis which damaged my heart muscle. I recovered to some extent, after an aborted heart transplant attempt, and worked all through the years when the three children were young.
Now, at 61, my heart is giving up the struggle, and I am hoping to be put on the waiting list for a heart transplant. However, lung function tests showed up some problems. I was told that my lung function is too poor to make heart transplant an option.
I persuaded the Cardiologist to give me 6 months to improve my lung function. I will then do a further set of lung function tests and he will make a final decision as to whether or not to send me off to Papworth Hospital for heart transplant assessment.
Which is what brings me to your excellent website. I now have:
Severe heart failure with an EF of 16%. EF means ejection fraction and is a measure of heart output. 16% is seriously poor.Moderate to severe COPD FEV 1 of 32% Emphysema Some Bronchiectasis Pleural Plaques
I am sat here, in the second week of my own rehabilitation programme, researching everything I can find about Pulmonary rehab'.It may be hoping for too much, but I will give it my best shot. One good thing, I have large and clear arteries, which means that unless I actually blow-up my pump, I can tolerate a lot of steady state aerobic exercise.
I am greatly encouraged by the stories of you good people here, for which, thank you.
Pete Rigby Pete@rigby5679.fsnet.co.uk
PAT
my name is Pat, I was diagnosed with chronic COPD in 2001, use oxygen 24/7 various inhalers, I live with my husband Bob and a scruffy spoilt dog! 3 grown up children and 6 grandchildren, currently waiting for rehab classses to begin leading to assesment for lung transplant, age 55, keep busy making cards, I would love to hear from anyone with hints and tips for a better quality of life and making everyday things easier to do, itsmemandu4@aol.com
enjoy the day and breathe well
ANDY
Just found your website after viewing the harrowing tale of Liz dawn on Trevor McDonalds documentary this evening. I too have been diagnosed with COPD and was informed of this 3 years ago, at the age of 43. As an Asthma sufferer all my life I have never let my illness beat me and have always led an active life, playing sport, swimming, international travel, living life to the full at 100 mph etc. Alas my stubborness in defying the Asthma led me to smoke as well and I have now smoked on and off for most of my adult life. This has now obviously resulted in the COPD and poor lung function tests. The last Doctor I saw at the hospital claimed I only had 10% of the lung performance of an average adult male of my age!
At present I still feel healthy and active enough (albeit under medication) but am very concerned to the quality of my future life - there is still so much to see and do! I too feel a little scared and would like to hear from other sufferers who try and lead an active life. I am still smoking, but intend to finish on Friday when my "duty free's" run out..!!!!!! Any help and tips on this would be greatly appreciated. I have tried acupuncture, patches, chewing gum, hypnosis but have always returned to the "dreaded weed" after a matter of months.
Lynn
hi, my name is lynn and i have emphysema.i was diagnosed with it about 4 years or so.i am at the moment trying to give up smokeing AGAIN .i have so far gone 14 weeks. i am still trying to understand it , but it is so confuseing.i am married and got 6 childeren and 13 granchildren, 2 more due this year.my sister also as it , but she had it longer than me .i am 53 years old,and wud love to hear off other sufferers.
lynn wiltshaw lwiltshaw@hotmail.com
ANDREA
My name is Andrea, I am 62 years old and live in France. I was diagnosed with Emphysema 6 weeks ago. I have been to my doctor - several times – and was always treated for chronic Bronchitis, which I have had most of last year, along with Pleurisy. I asked to see a specialist, as I was (and still am) breathless, wheezy and cough frequently, and also having spasms from time to time.
The specialist diagnosed Emphysema and also Asthma following a spirometer test. I did smoke heavily, but gave up 10 years ago. After the diagnosis - I was given Seterex - powdered form and was asked to come back in 4 months for another test. And that was it!! I could not believe it?
Thank heaven for your John's wonderful site. He has helped me more than I can say. He has given me the right attitude and I admire you so much for how you are helping so many of us.
I have lived in France for the past 12 years on the Swiss French border near to Geneva. The specialist was in France - but I am also seeing a Swiss specialist this coming Friday. It will be interesting to compare the treatments given in the UK, in France and in Switzerland.
My husband has also found a local GP here in France who also practices Homeopathy (I will see him tomorrow evening). He reckons there are 700 plants that can help with the symptoms of Emphysema. The French have a good reputation for homeopathy. I will be happy to write to anyone who would like to.
My email address is
JILL
Hi John
I found your web site after watching the Liz Dawn interview, it is fantastic and the info great I only wish I'd found it sooner. I've enclose a profile in the hope of being included on your friendship page and hopefully getting to know some new friends.
It was back in 1999 I was told I had Emphysema (COPD) caused be alpha-1-antrip at that stage I was 35 years old, still smoking and two stone under weight the doctors didn't think I'd long to live and wanted me to consider a transplant, but it wasn't something I wanted.
I'm now glad to say I have stopped smoking, put the weight on and have been stable for five years now, although I'm told only 23% of my lungs work and use oxygen 24/7 I get out as much as possible.
In 1999 my two sons were 9 and 16 I got very depressed when thinking about the future but was determined not to give in they are now 17 & 24 and we have already seen may mile stones I thought we never would. SO MY MESSAGE TO EVERYONE IS DON'T GIVE UP - KEEP FIGHTING.
Love to make new friends you can contact me at : jem1002@hotmail.co.uk
Hello John, I hope this e mail finds you not too bad.My name is Ruth and I was so pleased to find your web site. I became ill in March 2004, I was at a work's awards ceremony evening when towards the end of the evening I felt unwell, the next thing I was in A&E.After 5 days in hospital on oxygen and blood thinners they allowed me home. I was sent an out patients appointment and on my second visit I was asked to attend for a bronchoscopy, which told the doctor that I had idiopathic fibrosis of the lungs. For the next 3 years I attended the chest clinic on a regular basis, having lung function tests done regularly & each time this was done my oxygen levels were low or very low and I was needing to use more & more oxygen, my consultant could not understand why my oxygen levels were so low as my chest noises said they should be louder. In November last year it was decided that I should see another Doctor. I saw him in December and he sent me for an Iodine scan to see if I had blood clots on my lungs- I didn't, this would have been good because it could have been treated with blood thinners. So I was informed I had emphysema and I am now waiting to go in to hospital for an assessment for a lung transplant. My hubby passed away in December 2002 and I gave up smoking in February 2003 - I really don't know how I did it. It is so good to be in touch with other people suffering from this awful disease, I am really feeling quite afraid of all this surgery but I then feel privileged to have the opportunity at a second bite of life. If anyone wishes to contact me my e mail address is
JIM
Since it appears that people are introducing themselves ,I guess I should do the same w a little more info about myself. Jim ,57 ( soon to be).. Live in indiana ,dx w copd sept.07, per family physician.have been on spiriva since that time. I have quit smoking(again finally!).Will be going in for spirometer next month just to see how the spiriva is helping and to see where we're headed w treatments. Have gained a great amount of info already from this group of co-participants in this lifestyle. Sorry we have to meet like this..but, just the same I'm honoured to have the opportunity to live and learn along w all of you..
RAY
My name is Ray and I am 49 years old.
I was diagnosed with copd in 2004 it is something I am learning to live with it. I am working full time for royal mail, they understand my needs and have accommodated me on light work. I am married with two daughters the family do not really understand my condition as I don’t like to labour on it and try to carry on as normal. I take symbicort and combivent for my condition. I have had very little support from the NHS or I might not know who to contact for support?I have tried joining a gym but the majority of people that go to these gyms are fit and I felt a bit embarrassed, I go to the local swimming pool and go on the odd walk now and then.I would love to hear from any one that wants a chat.
RegardsRay
EILEEN
I have just read John’s wonderful website and would like to submit my profile to see if anyone would like to correspond with me.
My name is Eileen and I am 65 years of age. I live in Liverpool, divorced, have a grown-up son and daughter. My mother, who is 90 and as fit as a fiddle lives with me. Wonderful and all as my mother is she does not understand my problem and how frustrating it has become.
I was diagnosed with COPD in 1999 and it was gradually getting worse and I was spending more time in hospital than at home. Earlier this year I was also diagnosed as having atrial fibrilation - guess that's how you spell it. I do find myself getting very depressed and lonely as I was always a very active person before. I was a secretary for most of my life and never thought that I would say I missed the company at work.
One of my interests was gardening but this I am no longer able to do. I have been researching my family history for almost 30 years now and this does help keep me occupied but even then one gets fed up. I am housebound most of the time although once a week I do try and take advantage of our 'disabled' bus which will take me to the Library to carry out research.
Eileen - email EileenCrook@aol.com