We are doing some research into the r... - Lung Conditions C...
We are doing some research into the reach of our forum. If you have a lung condition, which of the following age ranges do you fall into?
Please select one:
Kittiecat here I'm 58 and have stage 3/4 empyhsemia I was diagnosed with copd at 45 yrs old and would like my life back
I am now 76 diagnosed with COPD early 2011
I am 69 and have moderate Bronchiectasis and Tracheobronchomalacia. I have many other diagnoses but they are not lung related.
IPF sufferer.Prognosis normally 3-5 years.I’ve lasted8-10 years now.
Was put on Perfenidone (9a day)for a year but off it now due to appetite loss.
Waiting to go on to Diatineb (3a day).
Keep going, your doing well 👍
Thanks Mauschen.My fingers are crossed.🙂
Please can you tell me what dirtiness is. I have tried looking it up but can’t get any info about it. Many thanks.
I don’t know what context you’re referring to ethred but dirtiness is derived from dirty, meaning not to be clean.
Please accept my apologies. I don’t know how I text dirtiness when it was meant to be Diatineb. Sorry for causing confusion.
(I was a bit puzzled🤔).—-Diatineb is a pill that was found to slow down the progression of IPF.I’m hoping to be put on it soon.
Thank you. I have been diagnosed with IPF also, that’s why l was asking about the drug. Good luck.
Thanks ethred.I’ve also gone completely teetotal and avoid chest infections by being careful of mixing with crowds etc.
Every little helps eh?
I’m 68 and was diagnosed 1 year ago with bronchiectasis. So far it is not impinging on my life. Fingers crossed!
Dear Salks ,
I`m very pleased to hear your bronchiectasis doesn`t impact your life but am extremely puzzled as to how you got your diagnosis if there is no obvious impact on you . I suffer the same ailment but it took nearly 2 years and a final CT dye scan to confirm my diagnosis . Leading up to this I had ever increasing breathing difficulties partly alleviated by inhalers and several spells in hospital .
Hoping you remain stable .
Best wishes
Roger
Hi Roger
I was diagnosed when I contracted a viral infection which went on to become a chest infection (the first I have ever had). I did nothing thinking if it’s viral they won’t treat it. after 2 months of this I had one day when I was so full of mucus I couldn’t breathe so ended up in hospital 3 times. After copious treatments with steroids I recovered and have been fine since. I was told I had bronchiectasis after a CT scan. My only treatment is duoresp inhaler. I do however have a productive cough a couple of times a day!
Do let me know how you get on
Best wishes
Salks
Dear Salks ,
Thanks for your response , it adds to my knowledge . You mention a `duoresp inhaler` . What is that ? . I am prescribed Fostair , Ventolin and Genuair which help alleviate symptoms . I don`t have much of a cough but do use a Cornet device which definitely assists clearing mucus .
Best wishes
Roger
Hi Roger
I think duoresp is a corticosteroid which I think is meant to reduce inflammation. I was also prescribed ventolin inhaler but I don’t use it. What is a Cornet device? Do you know why you have bronchiectasis? I was told mine was probably due to measles and pneumonia which I had when I was 4 years old which my mother said started my lifelong chronic sinusitis.
I walk half an hour each day 10 mins of which is uphill. It’s a bit of a chore but I force myself as I hope it keeps my healthy lung tissue in good nick. What exercise do you do?
Salks.
Dear Salks ,
Mine is blamed on smoking some 30 years ago . No credence seems to be given to me having had Pneumonia as a child nor to having worked with Wood or the quality of air around Heathrow and Northolt airports near to where we live .
The Cornet is German made and it is just one of several available `flutter` devices that cause a vibration in the lung which frees up mucus/phlegm . It`s a short curved plastic tube about 6" long with a silicon tube inside attached to a mouthpiece . Basically you breathe in through the nose and out slowly through the mouthpiece and it makes a sort of `clapping` sound as the air passes through the silicon . This obstruction in air flow is adjustable and it apparently sets up a vibration that heads back to the lungs. Once the out breath is complete then you do several `Huffs` . I`ve been using it routinely for 18 months now and it is really effective in helping to clear phlegm.
I don`t exercise much , I`ve had Multiple Sclerosis for some 25 years and have serious mobility issues and fatigue . The Bronchiectasis was an added bonus . Regarding MS my Consultant is now thinking it may be aggravating matters by impacting chest/lung muscles . I`m not entirely sure why it has been prescribed but I`m currently half way through a 3 month course of 5mg Prednisolone daily with a review at end of May . I`m not sure it`s having any real benefit but these things have to be tried .
Keep well .
Roger
I'm 67 years young and have copd for a long time now and been on oxygen for the last 3 years now generally i cope pretty well
I am 62, diagnosed with severe emphysema at 44. Now phage lung cancer and secondary liver cancer.
I am 77 with very severe C O P D. on oxygen full time. My sats drop very quickly so I'm more or less flat bound.
Why exactly do you require this information? To what use will it be put? I hope that this is not a Fakebook ploy.
Certainly nothing of the sort! Just a completely innocent bit of work that the helpline are doing into the age groups that use our forum.
Nobody is required to reply or vote if they do not wish to.
I am 64. Was diagnosed 6 years ago with severe emphysema affecting both lungs. I feel imprisoned 😓
can only see 1 question. there must be error on site
I am 71 diagnosed with COPD at 55 now also have Bronchiectasis
I have blood clots in both lungs, second time. Now on blood thinners for life. Been checked regularly for COPD and asthma due to symptoms.
I have had sarcoidosis of the lungs since I was 35. I am 74 now and still going strong.
Joyce here I have emphysema & asthma, I have also had sarcoma cancer of the lung, top lobe of right lung removed & 2 ribs, February 2016
I'm 67 now diagnosed ,3 year ago with mild COPD coping well exercise is the best therapy makes the lungs stronger hope this keeps things at bay for some years to come
I was diagnosed with COPD in 2001, only really had big effect on my life over the last 4 years, I'll be 1 in. May,
I have mild Bronchiectasis
These statistics only provide information on how old we are while using the forum. Not how long we have been living with a (or multiple) lung conditions. I think it could have been better designed
We're reviewing our (BLF's) support options offered to people at the moment and one of the purposes of this poll is that we are trying to gauge the age groups of people logging onto the forum at the moment - but I completely take on board what you mean, so watch this space, this may follow in another poll...
Maybe something you could consider would be to ask how many people have a terminal diagnosis. This is a delicate question but from the posts on the forum there are people willing to share. This information gives you an idea of those in need of immediate support and perhaps a spcial helpline?
Thanks for the suggestion mauschen - I'll pass this idea onto our head office.
In the meantime, anyone with a terminal diagnosis is always more than welcome to call our main helpline for support and advice from one of our specialist nurses ( 03000 030 555 Mon-Fri 9am - 5pm)
Best wishes,
Ben
Thank you Ben
Ben. I've only recently joined BLF but what a wonderful group it is. Thanks so much and good luck with all the work you do.
I’m 74 I’ve got chronic bronchitis had it for 6 years still mild I go to the gym been going now for 5 and half years never smoked my inhalers are Symbicort and Ventolin I don’t use the Ventolin
67yrs young end stage c.o.p.d i am told i am a co2 retainer Iam on oxygen 10hrs each night wearing a mask with a nippy 3 ventilator . I use oxygen when needed as i get very breathless doing anything physical .
Age 73 COPD since about 3 years back.
I’m 41 and just got diagnosed with OCPD stage 0 or one , my FEV1/Vc after dialator is 69.2 and I’m freaking out cuz I can’t find good answers on the net and I don’t trust my doctor diagnosis and I feel that I have to do something right now cuz it’s just the start and I’m hoping to do the spirometer again and see me above 70% the magic number .. any hope u think ?
Hi if you have Facebook there is support groups out there
Hi its only in the last year that my c.o.p.d. has gone worse was in i.c.u. last yearnearly was a gona but got me back thank god its so hard iam a brickie and people only today came to me to finish off a extention so hard to decline threw ill health would have loved to be able to do it but with only 20% lung capacity not easy had to turn um away but hey ho life goes on always someone worse off than yourself eh just got to try live with it.
63 years old life long breathing problems asthma copd bronchiectasis the latter diagnosed in 1996 have a heart problems angina cardio vascular disese recently diagnosed with cvid and waiting to start ivig infusions also steroid dependent plus nebs inhalers and a miriad of pills
stopped smoking in 1996
Born 1934 and evacuated from Bow, East End of London 1939. Home bombed 1942, so family moved to the country, and stayed there. Did military service, then worked for an asbestos company, then worked in the car trade until retirement at 70. Diagnosed with COPD about 10 years ago. I am still here due to the care of my wonderful wife of 64 years. Albert.
I am 71 years old, I hospital with bronchitis in September last and more recently diagnosed with top half of both lungs with Emphysema COPD. Two months ago I was considerably better than I am now. I am far more out of breath on effort. Can things suddenly deteriorate like this? The only difference to my life style is I have been unable to get to the gym due to the extremel cold and being ill. So can I regain the health I’ve lost at present with exercise and the gym and losing a stone in weight which I have gained?
Needing some practical advice 😊
Copy and paste this post into a post of your own viv4BONNIE , more people with similar lung disease will see it and be able to respond to you. If you put Emphysema or COPD into your title, you are sure to attract the right sort of people with the personal experience to help you.
Not everyone will look at the thread under a poll ... hope this helps.
Good luck!
I am 66. My main lung problem is lung function is only 20% due to scoliosis, But also have severe leaky aortic valve with moderate stenosis, so breathing is very poor all the time. Been to Brompton today for assessment for pulmonary rehab, which I'm starting on 23rd this month. Also been into Brompton for tests for TAVI which is valve replacement via artery as lung function too poor for surgery. Hopefully will hear next week they will do it.
Hi MisUse, Glad to hear that your heart valve replacement is being considered, because when I was admitted to St. Thomas about four years ago there was a lady there who had been admitted on several occasions after a heart attack and each time they declined to fit a new valve, the 3rd heart attack they said her heart was too bad to fit one. I was there because I had a mild heart attack and I heard one of the doctors say 'this lady here has a lung condition' and when they finally took me upstairs to look at my heart they said that it wasn't too bad and put me on blood thinners. I've recently been told that it is severe and I will need a little operation. I was told to take things easy and that I must attend the hospital every 6 months and I'm wondering how long I will last, seeing that they have cancelled my appointment 3 times already and its now in June, not unless they cancel it again??? Also, every 6 months? It sound like they are waiting for me to kick the bucket ??
Hi. How frustrating for you. Maybe you could ask for a referal to the Brompton to see what they think. Nothing is straight forward. They have been looking at my valve over the years, last time about 7 years ago, there was no tavi suitable. Sometimes things just aren't possible. Best wishes
Hi Ya
I have much the same as you have, I am waiting to see the surgeon that will perform the surgery.
Hope all goes well for, let me know how you get on.......Regards David
Did they treat your scoliosis in an attempt to improve your lung capacity?
When I was 11 back in ‘63, they did groundbreaking surgery, which was to graft bone from my shin into my spine to stop curve getting worse. If I was much (much) younger there is so much they could do but too old for all the new procedures they can do now. I was fit until I was about 56, worked till then, and it is only last 4 years I have become so disabled by it, so not done too bad.
I too have Scoliosis which I believe is the reason for my diminishing total lung capacity . I have a hand made (not by me) corset to wear, which is ok in winter but not in summer. My physiotherapist is great but my pulmonologist is in denial that my condition is partly caused by this structural condition.
I was diagnosed about 8 years ago but the radiologist told me that it looks as though I have had this problem undiagnosed since childhood.
I'm surprised your pulmonologist is denying a link between your scoliosis and lung function. How severe is the curve? If you are concerned could you get a referral to Brompton? I have an amazing respiratory dr who specialises in respiratory problems of those with things like scoliosis.
I've used this forum since being diagnosed with COPD & Emphysema. I have found it most useful to understanding my situation and that of others.
IKeith
I have asthma with a rap round of COPD, which was diagnosed in 2006. I have been fine except for now and then in the winter, when Iv'e contracted pneumonia or some other chest infection. The nurse at the surgery said I had stage 2 COPD.
I was misdiagnosed with COPD early 2016 and was an invalid as a result for 18 months until I was correctly diagnosed with eosinophilic asthma in Sept 2017. This gave me my life back. I encourage everyone diagnosed with COPD to look at the eosinophil levels on their blood tests. If .4 or above you should explore that possibility.
Emphysema stage 4 diagnosed 2012 my husband died in September 2017 with COPD I'm really Scared just now extremely hard to breathe and I can't get oxygen! reason is I haven't stopped smoking for a year!
HI Poppy I was diagnosed with COPD 12ish years ago and was only 50 years old at the time. My life completely fell apart. Chest infections and depression had me in their grip for at least 6 months. I hit the bottle big style and continued to smoke like a trooper. Eventually I came to the conclusion that I had to find a way to deal with this just like I had with all the other shit in my life. Took all the meds and went on one of the first pulmonary rehab courses in my area. Still smoking and drinking. After all this time they are my relaxing things. I didn't expect to be here now but I am. All of the medical professionals I have been involved with know that I still do these things and still give me the best care possible. You have to do what is right for you no matter what. It is your life. Be Strong. Love Patsy XXXXX
COPD. Bronchiectasis. Severe reaction to ciprofloxacin so no more fluoroquinolones
Hi Ben,i woz diagnosed at 50,my dad died,i went in2 detox wiv my childhood abuser gone i thought id giv it a try after 30yrs.2 hospital stays,osteoarthritis in my ankle flared worse so wiv copd i use a mobility scooter now as i cant walk mor than 5 steps wivout stoppin wiv exhaustion + swellin of me left ankle that i cant weight bear.i am 54 + on oxygen most of th time x i bless every day as i feel im goin fast x many yrs of drugs 2 numb my pain hav destroyed my body x thanx 4 cathartic poll x take care x belzy x😊😘🙃💋💖👍
Pete is 66 and diagnosed with sarcoidosis in 1991 and COPD in 2010. Not on oxygen. Xxx
I have asthma and Bronchiectasis
Wow that age grouping 61-70 does surprise me , is this a form of genocide
Well, don't you think it's because many of us have lived our lives less affected by our disease when we were younger.... but due to age, and also due to having disease longer, it's catching up with us. I went more than ten years not realizing about my bronchiectasis, and I was not diagnosed with PCD until about two years ago. Yet I've likely had them since childhood or birth. I was healthier than I thought, all things considered. But now, the disease is advancing and I have to pay attention.
I am 68 with COPD...... diagnosed in 2013 but have had it much longer I believe.....on oxygen 15hours a day.....I'm coping ok I think, get very short of breath on exertion, but that's par for the course........ wish I didn't have it but some things you can't change.......I'm alive and kicking and hope to be for a long while yet......cross fingers 😉
I am 79 I have had COPD for about 13 years now. Not much support in this neck of the woods.
36 year old diagnosed with 2/4 stage empthsyma. I'm too young to have this horrible disease.
Happy to help with your reasearch Ben. I'm 68, been diagnosed as having COPD for manymore years than I care to remember but at least 18 yrs. My COPD is linked to Asthma.
Hi I'm 57 and I have mild copd ,had my lung function test done.recently and it hasn't changed in 2years VERY PLEASED ABOUT THAT .
On preventive antibiotics 3 times a week plus sprivia , and seritide daily , and a nasal spray 2times a day as I seem to suffer a lot with sinus infections
But that's life !!!
I am 67years old and have had emphysema stage 4 for a few years now . My consultant said I was a model patient and he was sorry there was nothing he could do for me . I have done 4 sessions of pulmonary rehab over the last few years and I am convinced that has helped me to keep going . I also have oxygen
I am 67 and have emphysema stage 4 . Pulmonary rehab sessions have helped keep me going plus oxygen and wonderful husband and daughters . Determined to celebrate my 70th birthday😊
I was diagnosed with Pulmonary Fibrosis in 2001. I also developed Traction Bronchiectasis in 2008. I am now 67 years old and so fed up with the constant cough.
Kittiecat here has anyone thought about using hypnotherapy to cure empyhsemia afterall the mind is telling our body what to do why not use it to trick our lungs any thoughts on this anyone ?
Hi I have emphysema and COPD have had this now for 9 years
I have had two lung reduction operations the last one done In 2015
I’m now on ambiglatory Oxygen has soon has I stand up I need oxygen my sats are dropping into the low 80s after sitting down for around 15 minutes I come up to 94 %
My husband is being considered for lung reduction. Did it help you at all?
only one question? I and I feel sure lots of others would be interested in the results of a very wide ranging survey covering many aspects of lives and lungs.
45yrs old got sick, real sick 46 stage 4 emphysema, Alpha One Antitrypsin still alive and fighting
I'm Roger. I have Alpha1 Anti-Tripsin deficiency. I was diagnosed in 2004, okay not to many problems (using puffers etc) until 2013/4. Started to struggle with walking up inclines, carrying shopping etc, but persevered. Then in 2015 breathing in warm/hot weather was difficult as well. Attended a Respiratory Rehab course at end of year. Beginning of 2016 went on to Oxygen when out, doing excercises etc. Went up to Chelsea in Feb, was told there was nothing could be done as my Empysema was to widely spread. Op not possible to ease problem. Life continued quite well until Dec 2017 when I had an Exasperation/Ambulance took me to A&E, which lead me to be in Hospital over Xmas/New Year. When I came out I could hardly do anything except sit on my behind. Had a Oxygen Assessment in Jan 2018 and was put on Oxygen for 12 to 15 hrs a day to be reviewed in April. This was yesterday and my condition has slightly worsened so I am to remain on the Oxygen on the same basis. So me, my Mobile scooter and Oxygen get out when the weather is fine.
I am 62 and have severe copd now for 2 years was first diagnosed in 2003
Dubba 61 here actually nearer 62. i was diagnosed with COPD including level 3 Chronic Asthma 14 years ago.
Just had another chest infection, I don't like having COPD it horrid.
Hello Ben. I am 75 and was diagnosed last June with emphysema and copd. Am leading a more or less normal life by mainly taking my inhalers as prescribed and going to Pulmonary rehab.
I am 69 and I have bronchiectasis which is being well controlled by Azithromycin.
Dear Lilyanne17 ,
I have bronchiectasis and am prescribed inhalers . Fostair , Ventolin and Genuair , all help to mitigate the symptoms but I constantly struggle for breath at any minor physical effort . Even turning in bed is a problem .
What is Azithromycin . If it keeps your B well controlled perhaps I`ve been prescribed the wrong meds so info about your A may help discussion with my Chest Consultant .
Look forward to hearing from you .
Roger
Hi Roger, I was lucky to be put on the Azithromycin programme by a Prof. at Ninewells. I am also on Duoresp Spiromax 150 inhaler ,Aclidinium Bromide Inhaler and use Ventolin as necessary. The bug that sets off my chest infections is not the usual pseudomonas. I was initially on the Azithromycin, one three days a week, for a year but after coming off it, as it was a trial, I ended back where I had started so I am back on it again and all has settled down. I know others for whom this drug has not been successful guess I was one of the lucky ones. Only down side would be if I became resistant to antibiotics!
Hope you get it sorted out soon, Regards, Lilyanne.
Anne 71. Mild copd diagnosed about a year ago. Spiriva inhaler one puff daily. Can’t do two puffs as gives me really bad indigestion! I do the pursed lip breathing exercises. Love reading the forum and do so nearly every day. Thanks to you all for interesting and often entertaining input! So far not too much impact on my life although if I get a sore throat and cold it usually goes to my chest and then I know all about it as feel so awful then. Best thing I have done this winter is to take vitamin d3 and am sure this has kept me free of infection despite very frequent contact with young grandchildren with colds and coughs. Was a smoker but have had no cigarettes for over 30years.
Hi Ben, diagnosed with asthma at 38 which lead to ABPA and Bronchiectasis diagnosis at 43 - chronic rhinosinositus since late teens with sinus surgery at 43. Osteopenia diagnosed at 45 due steroid use and now can't come off due adrenals + way too many tablets each day 😉
I feel lucky compared to a lot of the lovely people on this site and I am just pleased that its here for us all to share stories and get support regardless of age and background!
Best wishes to all ☺
Hi Ben I am in 3rd stage Emphysema also have asthma
Industrial injury - asbestosis/pleural thickening - not disease. Oxygen user, static and portable supplies.
I am 71 tomorrow and was diagnosed with copd 3 yrs ago and was told 3 month ago I had emphasema in my left lung.
I am 74 and have bronchiectasis and probably obliterative bronchiolitis, which was possibly caused by dronedarone taken for AF. I have congenital heart disease too, which makes balancing treatments difficult.
I am 69 ,I was diagnosed with COPD in 2012, I don't know much about my COPD ,as I only see the nurse 2times a year.
I am 71 years of age and was diagnosed with bronchiectasis 18 years ago. I also have idiopathic subglottic stenosis (narrowing at the top of the trachea) which in itself is like breathing through a straw when it is bad. I have the scar tissue lasered periodically so I can breathe. I also have a heart valve issue. Thank you to everyone on here who shares it is most helpful and it is such a supportive and kind online community. Best wishes to you all and greetings from Oz.
Oddest thing happened today I went to my Pulmonologist with my CT disk which the Radiologist diagnosed as mild bullea emphysema. This was my first visit and the Pulmonologist said he doesn’t believe in Radiologist diagnosis until he himself does complete PFT . He said many folks have Bullae and it doesn’t necessarily mean Emphysema or even COPD for that matter . I thought it strange that Pulmonologist and Radiologist could have 2 completely different opinions . My fingers are crossed with a new hope . I took unofficial base breathing tests today and passed but they were very general
I am 72 and have COPD (Empyhsema) Isince 1997 I was told I would get 10 years, that was 21 years ago. I also have CHD and CKD stage 3 and other odds and sods.
So I'm in the big purple bit. What does that mean?
I'm 76 and I have Bronchiectasis. Just had a recent heavy cold and chest infection. After recovery I find that I have lost my sense of smell and sense of taste. Both I and my GP think that the olfactory nerve could have been damaged by the cold virus and she has arranged for me to see an ENT consultant, but from what I've read, I'm not optimistic.
Oh, that sounds so sad. How can a cold virus do that? I used to get inner ear infections as the result of cold viruses- doctor said the cold virus invaded my inner ear. Don't lose hope. Good luck.
I am 73 and was diagnosed with COPD June of 2017, have had 2 chest infections since, makes me very weak.
My pulm consultants and two hospitals cant agree with my lung conditions, COPD with underlying asthma and bronchial restriction or another diagnosis.
COPD Bronchiectasis lesion right bronchial airway restricton.
Mild no no no, moderate maybe maybe, it might be I`m DEAD possibly nope just shut off to so much conflicting diagnosis from hospitals!!!
71-80
COPD diagnosed about 3 years ago
I am 66. Diagnosed at 58 with severe copd/emphysema.
I don't think the age chart is very accurate as COPD seems to be diagnosed later in life and it's asthma etc that is found earlier!
I agree, however, I don’t think the research is really about lung disease as they are only collecting age groups.
We are from different countries, different healthcare systems and many of us have multiple lung disorders. One cannot improve a service with this type of poll.
Morning all. When I was diagnosed 2 years ago with emphysema bronchiectasis and p.f. I knew nothing of these deseases. This site, and people, with such good advice have been marvellous. I'm in the 71-80 bracket. Keep chatting. Jane.
78yrs old, mild COPD with emphysemic changes diagnosed in 2015.
I am 87 years old and I was first diagnosed with COPD in 2004 and correctly diagnosed with bronchiectasis in 2012. I would like the medical profession to recognise the condition in greater depth and provide resources accordingly,after all it has only existed as a common disease for over 200 years.!
dorethy1 here. I am 81,and was diagnosed with stage 2 emphysema a year ago.
i was diagnosed with stage 2 emphysema a year ago
I had collapsed lung three times, bullea and emphysema at 28. I’m a bit older now and have lots more things to add to the list x
angelgran here. I was diagnosed with Bronchiectasis in 2009. I am now 75 and in the last couple of years has really impinged on my life with more infections.
Diagnosed with stage 2 COPD last week age 61
I’m not sure Where the end of the line is so i’ll Just sneak in here. I’m saramana and have emphysema. COPD was diagnosed in 2015 and went on oxygen in 2016. At 92 I’m still looking to hit 100. Sorry, I can’t wait here for you all to catch up with me but maybe when I get to 100 i’ll Just sit down in a rocking chair until Isee you all coming and I’ll greet you all with a big hug.
Hi everyone, I live in Australia and really enjoy this site,I was diagnosed with c.o.p.d. in 1998 I am 73 this year, I am on oxygen when needed which is just about any time I need to do very slight tasks....
I was diagnosed with late onset asthma at 36 years old. In the last two years plus it went from mild forr 10 years to first asthma attack at 47 years old. Has been more serious since then. Age and being a pre menopausal woman has helped? !
Are you looking at trends or just getting a snapshot. I've had a bad chest since I was 4.......now aged 61. Thanks for all you do. Vivienne.
I have stage 4 Emphysema , waiting Double Lung Transplant , on The List for almost 2 years. Now, hoping to have a valve procedure in Mid June, whether it works or not, I shall stay on the Transplant List. Want to have a Life, to Travel and see my Grandchildren Abroad.
Want to Add that I go to Rehab, Breathe Easy Exercise Classes and The Gym, all with my Oxygen. The best thing for this Horrible Disease is Exercise, Quit Smoking, Oh Yes you can. And I have Osteoarthritis . Amazing how I feel after my Last Exacerbation 5 weeks ago after now returning to Rehab, Onwards and Upwards. The Sun shine makes a Huge Difference to our general well being. Be Positive . XXX
Margaret here, 82 yrs old (can't believe it.....) and have had three diagnoses in the past year: ILD, then Pulmonary Fibrosis, lastly a few weeks ago I was told I had Chronic Hypersensitivity Pneumonitis. Never heard of it, but it seems to be a very obscure allergy to an even more obscure allergen.
It's come totally out of the blue - I mean Farmer's Lung....? Bird Fancier's Lung...? What????? Never kept birds, never smoked or come into contact with asbestos. Anybody else....?
I'm 17 and a brittle asthmatic and as suspected I'm one of only a few my age. But I love this forum, it's a brilliant place to get advice and support from and it's a brilliant place to be able to help others. You see i'm college student studying health and social care and im wanting to be a nurse, so helping people is in my nature, i love it. Do wish there was more breathe easy support groups in my area and at a more convenient time so I can physically meet other people in my area who have similar issues i don't care how old someone is, if they are in the same boat we can help each other. ( I have emailed BLF about this).
love this forum, so glad I found this place, this winter just gone has been quite a tough one for me personally and without this i would be lost because there's been many down, frustrating days but ive been welcomed on here to rant and know that im not the worst and that people are going through similar situations is very helpful and feel not so alone, because at my college. there is like no one i know in my position. (however, at my placement where i look after the elderly, there are many who understand what it's like to have breathing issues).
thanks to all on healthunlocked for all your help, i hope I can be of some benefit to you too x
I can't believe such a huge amount are under 30! That's impossible. Most on here are between the ages of 45-80 x
There are 6 under 30s at the moment Bev, about 0.7% of responding members. Have you read it properly?
Oh dear on re reading it I mistook the 71-80 group as under 30 (hangs head in shame). Well they are both blue 
xx
I am 61. I have "non-specific interstitial pneumonitis". This caused extensive honeycombing, some air-trapping and bronchiectasis. I was diagnosed in 2013. My oxygen levels drop very quickly as soon as I move around so I am virtually housebound and on oxygen most of the time. I exercise as much as I can but am restricted to non-weight bearing exercise because of my other disabilities. I have other health conditions.
I was born with a genetic connective tissue disorder - Ehlers-Danlos Syndrome (EDS). At age 15 I was damaged during an operation on my foot causing severe Causalgia. Later I was damaged during an epidural procedure causing severe Causalgia to the whole of my spine. At age 18 I had a 6 pint blood transfusion and I immediately suffered from symptoms of Hepatitis. I repeatedly told my GP that I had been infected with Non A, Non B Hepatitis (now called Hepatitis C) but I was constantly accused of being a Hypochondriac. The diagnoses of ALL these conditions took decades leaving me with no support and no help with managing the extensive symptoms of all these conditions.
Of course, if I had been diagnosed the NHS should have known that all invasive procedures should be avoided in patients who have EDS and at least the damages could have been avoided.
Responding on behalf of my husband, officially diagnosed today with severe copd; spirometry was delayed due to having been treated with steroids for a chest infection. Having been treated for chest infections several times in the past, I suspect that had I not insisted he had symptoms of copd he'd still not have been tested ... how I regret not being insistent earlier.
Stage 4 emphysema - have atrial fibrillation and high blood pressure. Was diagnosed with emphysema in 1980. Was a 30 a day smoker
I’m 66 I have COPD Emphysema and bronchial discease have had two lung reductions on my 2 nd operation I cam out needing Oxygen for Ambiglatury walking moving about etc that was nearly 3 years ago I’m on 4 litres of oxygen now can’t do anything much that takes any effort my levels drop to bottom 80 s
Kittiecat here is it just me who is sick and tired of having my Meds changed to cheaper ones or different company's I'm paranoid of even changing company's name but same Meds this damm disease is so getting me down in don'the even trust my doctor 😠
Hello Kittiecat. This is a poll about the different ages of our members. If you would like to talk to others about your meds then please make a post on the forum here: healthunlocked.com/blf/posts
Because have heart failure symptoms too 10 yrs before cardiac arrest but pre capillary PAH only diagnosed 13 yrs later by an alarm on a Reveal Device not revealing the spasms .I suspect the problems of heart/lung overlap e.g.: dysponesa/PAH and NHS ignores classic symptoms in favour of out of date Testing with unreasonable policices & procedures .I cannot see how this makes sense as my function has been very disabled & ignored e.g. ; spasticity spasms as underlying it is a disability that it found then ignores .
If I were to try stem cells do they have to be specific to lung when problem concern lymph system too so probably microvascular .The specialists agree.....
Hi Nanniex6 here i am 72 yrs old , i have Emphysema 14yrs and Bronchiectisis 6mths on Oxygen 24/7
I was diagnosed at 49. Would like a bit of a life.
Diagnosed back in 2008. Very mildcstvthat time but last couple of years my breathing not been good then last year rushed into hospital told me had severe emphysema and copd. And I alsobretain c02 so have to wear a Niv mask especially at night time. I hoping next year to have coils. Don't know if they will work for me because my breathing not good at all some days can barely walk. But not going to let it get me down. I have a great family who watch out for me so can't complain.
