What lung condition do you, or the pe... - Lung Conditions C...
What lung condition do you, or the person you care for have?
My age 49 lung age80
David ask your Doctor to test you for alpha one antirypsin deficency, if he never heard of this please pm me and I will pass on details where you can obtain a test kit ....
I have Pulmonary Fibrosis which they seem to think has been caused by an faulty antibody. (anti jo 1 pos)
Why is one condition used if you have more than one?
I HAVE NOTED COPD BUT IN FACT I ALSO HAVE ASTHMA AND SO YOUR FIGURES WILL NOT READ RIGHT BECAUSE I AM SURE THAT A LOT OF PEOPLE WILL HAVE BOTH CONDITIONS;
Diagnosed with bronchiectasis about six years ago after coughing up blood. And following bronchoscopy and ct scan.
Unknown condition doctors trying and guessing different treatments nothing working,now waiting to go on transplant list all started with a cough
Idiopathic pulmonary fibrosis.
I have Bronchiectasis, Emphysema, and Scarred lung..
Hi Tom, I have bronchiectasis, emphysema & a scarred lung too. So you are not alone. When you're feeling rough, isn't it a nightmare trying to decide which is the one that's creating the problems? Hope you are better at working it out than me! Keep smiling.
Hi Kimtc
I know what you mean about finding which one is causing you to be off colour so to speak.
With me it is usually my sinus that starts infections, doctor calls it nasal drip.. and gives me nasal sprays, none of which work, but , it keeps him happy...
This weather is bad for us, so take care of yourself and keep cosy.
Tom.
Hi tomc,
Yes I get sinus trouble too but only slight thank goodness.
My family say that I only have to look at a photo of someone with a cold to catch one! Seriously though I've never had much immunity & dread the Christmas to April period.
Aren't you applicable to have your sinuses drainned, or wouldn't that be of any help?
Know what you mean about the weather.........already dreading the heating bill coming.
Hope you can keep warm & cosy too.
Kim.
Hi Kimtc.
I have Very bad face numbing caused by the sinuses .
Doctor just says to keep using the Serimar and Beconase .
Will have appointment soon to see Consultant, so I will see then what options are open for me.
Keep well, and have a good Christmas.
Tom.
Hi Tom, sorry to hear about your sinuses being that bad. Afraid I don't know anything about this problem so can't be any help to you.
By numbing do you mean that you are unable to feel on your face? I hope that the consultant will have some good news for you. Let me know how you get on & good luck. Happy Christmas to you too & lets hope that you have happy news to tell.
All the best.
Hi Kimtc.
Yes by numbing I mean it is just like when you get a Novocain injection at the dentist except it is all over the face.
Tried everything and doctor tells me keep steaming, I feel like getting steaming, steaming drunk that is.
Hope you are doing well, I am OK just a little infection of 7 Grandkids calling me Santa..
Hope you and your family Have a really good Christmas a happy New Year.
Tom.
Idiopathic Pulmonary Fibrosis. Age 67.
I have put asthma but also have copd
emphysema and asthma
Obliterative Bronchiolitis
Hi Chris, is this the same as bronchiolitis obliterans? My respiratory consultant thinks I have that
Small airway narrowing, pulmonary change and respiratory muscle weakness
IPF, AGE 58.
I put COPD but also have asthma and severe lung scaring shame not able to choose more than one as it makes the results different if I could have put more, suspect others have more than one condition too.
alpha one
On my third wack of lung cancer in eight years, thelatest found a fewish weeks ago.
it seems that when you pass 65 it can only be controlled with inhalers because of the seriousness of operating on over 65s but i must my GP is very good
also COPD
IPF and bronchi act is is and emphysema with bolous - what fun
Agreed some of us do have more than one lung condition so the poll figures might not be a true reflection of percentages. I have COPD
Very surprised to find COPD in such a high position I know it constitutes a lot of different ailments I would have thought Asthma would have been top, anyway to all my fellow COPD sufferers I hope you all have a trouble free Christmas and a good New Year with no flare ups
All the best
Billy K
Can't vote as it only allows one option not several!
My husband has Idiopathic Pulmonary Haemosiderosis -diagnosed with a biopsy three years ago at the age of 69 . Very rare condition - only person in Wales with it as far as we are aware .
Respiratory bronchiolitis interstitial lung disease and asthma x
non small cell cancer of the left lung.
We better not. Have a race this year. We all be goners
I am carer for hubby Pete and he has COPD but also sarcoidosis which causes scarring on the lungs and in the airways.
Said to be mild. Diagnosed 3 years ago but may have been present when first diagnosed with Vasculitis in 2005. I'd had a persistent cough for 6 months nothing showed up on normal X-ray and on seeing a chest consultant she said it was my kidneys failing. Taken into hospital, had kidney biopsy and Vasculitis diagnosed. It was only some years later when I again had a bad cough a scan was done which showed mild pulmonary fibrosis. I think I should have had a scan in 2005 at the start of the investigation but as kidneys were failing eGFR 14 that took priority.
I am 46 years old, I was diagnosed with emphysema about 7.5 years ago and have had asthma since my late teens, I have also suffered several spontaneous pneumothorax and had a bullectomy and pleurectomy surgery.
Emphysema
alpha one antitrypsin deficiency
Hi flo 1, hope you don't mind me asking but how long have you known that you are an Alpha. I only ask because it is in my familys' bloodline, or not, as the case may be. Are you having any problems with it or managing to keep ok?
Hi kimtc, I was dxd in 2007 I was sick around a year before this and was told emphysema, I was 44/45 when I became symptomatic out the blue, because I had been super fit and active all my life with no breathing probs. BIG shock! If its in your family you need to have a test for it, its genetic and passed down and through your mum and dad, you can get a free test kit from Adapt Queen Elizabeth Hospital it is a simple finger prick test that you send back in a pre paid envelope not costing a penny and worth a fortune in knowing, I got tested through the hospital because I was too young to have emphysema so they knew something was up, alpha one is first and foremost a liver disease the protein needed to protect the lungs is absent which is why u get a secondary and mostly this is the biggest problem our lungs but our livers are defunct too, I do okay I was given 2 yrs left to live in 2009 with 22 % fev and stopped my smoking and started to fight for my life I am around 42% today but I only have the middle parts of both lungs left I will be 54 in June I hope I can hold off on transplant but who knows? Once we loose our lungs we never get them back, so keeping positive I am seen 4 times yearly once with alpha expert in London and 2 or 3 times on occasion locally, they monitor us and our livers too...hope this helps if you need more info message me .
Hi flo1,
I had a positive test a few years back & spent a few months of worry, research, & finding other relatives for info, only to be told when
re-admitted for pneumonia that there had been an error & I did not have the gene deficiency after all. This was after I'd informed my children to get tested.
My aunt had a heart transplant well over 20 years ago, when they were first around. She also had double lung & a liver transplant as well. Obviously, all the family used to joke with her & nicknamed her "Robot".
I only tell you this as my aunty passed away earlier this year at the age of 84. That is pretty good going, being an Alpha & having all those operations.
I only tell you this to lighten your heart as we all know the medical advances in the last 20 years. So please don't hesitate if the drs find you a match. Just remember that the younger you are, the better the chances are of good recovery.
Take care & look after yourself well. Remember you are important!
Kim.
I have both Pulmonary fibrosis and Bronchiectasis.
I put "other" as, like many other people, I have more than one condition. I was diagnosed with COPD about 6 months ago. However, in 2011, I was diagnosed with lung cancer (twice - 2 separate tumours). As far as I know, don't have lung cancer now but my left lung was removed and COPD is the lesser of my conditions.
Cavitating aspergillosis
Aspergillosis
also asthma, COPD & Emphysema & very scarred lungs.7
That is how to beat the system of one choice only!!
Other - I have Chronic Extrinsic Allergic Alveolitis Synonym: hypersensitivity pneumonitis - never found cause referred for Lung transplant
I have COPD ansd Alpha1. The reason most will have COPD is because it is more common than IPF /Sarcoidosis etc. Asthma is even more common than COPD of course - but in many patients is mild enough for them not to bother with forums etc. Those that do have more severe Asthma tend to belong to Asthma UK. Likewise most with lung cancer belong to cancer support groups.
Non specific interstitial pneumonia
I put COPD but also have Asthma
I have put COPD but this can include more than one ailment. I only have emphysema and not bronchitis so the poll will not show the true state of these various ailments.
I am 'Other' I was diagnosed with langerhans cell histiocytosis at the ripe old age of 35..
Emphysma also.
marguerita i also have bronchiectasis diagnosed 5 years ago have scarred lungs and left lung lower lobe removed 55 years ago also aneamic had to have a blood transfusion 3 years ago a lot of people with lung problems could be aneamic and dont know it under the hospital right now trying to sort out antibiotics
Emphysema is the closer name but it is lumped in with COPD on the basis the of the treatment available I believe.
husband has pulmonary fibrosis (and Parkinson's). Not sure what info you need. PF diagnosed end 2010...now deteriorated quite a lot... with both illnesses. On portable oxygen as and when, and 15 hours cylinder during night. Desperately weak and always sleepy. Getting depressed tho' not severely at present, and sometimes a bit short fused.
Ive recorded my copd and asthma as "other" since i can't put both in your poll.
I have both copd and asthma (had latter since my 20s). Ive recorded them as "other" since your poll doesn't have the facility to click on both.
Ive recorded my copd and asthma (which I've had since met 20s) as "other" since the poll doesn't have the facility to record both at the same time.
"Every cloud has a silver lining."
In December 2008 I went into hospital with type 2 respiratory failure and at that time I smoked, drank and let's face it didn't look after myself well. It nearly killed me, I spent six week in hospital two of which in an induced coma to save my life. The treatment was very invasive and has left me with COPD and lung damage.
My one piece of advice would be exercise is everything. If you feel bad - exercise.
Life for me now ? Well I'm here.
Happy Christmas to my fellow sufferers.
COPD is a collective term, NOT a disease!
Survey should be redone mindful of majority. Potentially could gave more than one condition. My mum has bronchietisis, copd, asthma, pseudomonas. . . Could this be done and to investigate further, identify potential causes? I.e childhood illnesses, exposure chemicals, poor nutritional history etc. be so refreshing to see research develop in lung conditions
I was diagnosed with lung cancer but too date clear following a Lobectomy, almost 2 years ago. I was formerly diagnosed with Asthma but now they say I have COPD with a strong Asthma aspect.
pulmonary hypertension
asbestosis
Alpha 1 antitrypsin defiency ZZ phenotype, copd and emphasema. X
c.o.p.d and bronchiectasis
bronchiolitis obliterans
Having stopped smoking and getting a dog to get me up walking her has helped my lung compacity,however,the attacks still frighten me as I never no when they will occur.Things could be worse and will be again I expect.Listening to your body as one gets older is a art without a teacher: I am 59 with a lung age of 84.I have other conditions that affect my exercising.
all i know is 4th stage copd [but after all is that not an umbrella diagnoses for many things ? ? emphysema etc etc ] , advanced ankylosing spondylitis, crohn's , heart failure ,,,, thats enough to be getting on with,,,
i reiterate ribs post,, why only one ?
merry christmas moderator,, jimmy xxxx [if your a man,, im in trouble 
]
I put COPD but also have Alpha-1 antitrypsin defieiency
LAM
I HAVE COPD FINAL STAGE PALLATIVE CARE, ALSO HAVE ASTHMA /EMPHASEMA, IM JUST 59 .
Still awaiting a full diagnosis both mild COPD and Bronchiectasis have been quoted.
My age is 61.5 years old with a lung age of 90 years old.
I am my husband's carer. I thought COPD was an umbrella term? He has Bronchietsesis and pseudamonas. Was in hospital for 3 months last year at this time. Really don't understand this survey. Happy and Healthy Christmas to you all.
PF, PH, RLD and paralysed diaphragm
My husband had Pulmonary Fibrosis and sadly passed away March 22nd 2014.
Emphysema
I suffer with severe Emphysema in both lungs as well as copd.
I have severe Emphysema in both lungs, as well as copd.
Sarcoidosis
emphysema
I find it extremely interesting that most if not all respondents have criticised this “one condition only” style poll. By not trying to find out all the respiratory diseases respondents suffer from, the poll is basically meaningless. It is also clear from reading all replies and comments that we need a clear definition of the ubiquitous term “COPD”: umbrella covering what exactly?? Collection of which pulmonary conditions? And why is aspergillosis not included in the poll??
Clear definition of known respiratory conditions is needed, not to justify curiosity, but to help patients collectively and collaboratively disseminate information about pulmonary disease and foster self-management and peer groups.
Hi
Have you had the chance to look at the BLF information about COPD?
blf.org.uk/Page/chronic-obs...
Aspergillosis, and lots of other less common conditions, were not included in the poll as there is a limit to the number of options we can give. The poll is not meant to be scientific assessment of the prevalence of lung conditions - it's just to give us (the BLF) a rough idea of the conditions that community members have.
Thanks for your feedback
Yes I am fully aware of BLF excellent web pages and patient leaflets. But the reality is that amongst members of the public, pulmonary disease patients and healthcare professionals [particularly at primary care level] there is an awful amount of confusion.
BLF for instance writes that bronchiectasis “is also sometimes linked with chronic obstructive lung disease (COPD), but the two are separate diseases and it is important to correctly diagnose and treat both”. Very true and very good advice, BUT you will find many patients who have bronchiectasis and not COPD coded for COPD on their local GP surgery medical record. And the relevant treatments are also open to question.
What I think we [clinical care staff and patients] all need are strong messages about ALL pulmonary diseases because patients will have more than just one particular condition. By constantly highlighting COPD and keeping the other diseases more or less hidden we do harm to patients and to their families/carers. Any lung disease is debilitating and, alas, there are many different conditions not easy to treat, not easy to manage…
Of course COPD will be prevalent as it is still much easier to smoke and/or inhale passive smoking than be in respiratory contact with asbestos and other such dangerous substances. But having said that does not make us progress towards easing the pain of sufferers.
The numbers game in this poll and in the constant preponderance of COPD attention is in my view rather dangerous in ignoring patient multimorbidities and other environmental conditions such as housing [damp, water contamination, poor ventilation] and pollution
54 lung age 82
I have long life asthma allergies and diagnosed with COPD 2013. Medical professionals are unsure which branch of COPD I have.
Also Asma and A.F.
Copd close
was told by consultant my bronchiectasis is hereditry,my mother died from this condition several years ago,my two nephews suffer from it,my younger brother has it.my sons were tested for it and fortunately are clear.I was not diagnosed until l was sixty years old,after a lifetime of pneumonia,plurasy,bronchitis,collapsed lung,etc.etc.Had to wait till l retired from work to get anything done.enough said.!!!!!!!!!!!
I have copd and palimony fibrosis and astma
I have Emphysema
I also have emphasema.
my age 68 lung age 90 I stopped smoking 12 years ago when told i had COPD but the damage was done. I have worked on building sites all my life as a contracting electrician and come into contact with all types of environmental dusts,fumes etc which were part of everyday life at the time and was not made fully aware of the future dangers by the main contractors. Thankfully Health and Safety Laws and their enforcement have made life on site much safer
similar 45 & lungs of 80 year old
have mild copd and pulmonary arterial hypertension which is idiopathic
I have bronchiectasis, emphysema, & a scarred lung due to case of tb as a teenager. I get recurrent infections such as pleurisy etc. & have had pneumonia 5 times. Still going strong in between though!
I selected copd (emphysema) and asthma, but copd was deleted whenI put second ailment in
ermintrude
I have asthma too but couldn't put that in!
COPD WITH MYCOBACTERIUM AVIUM COMPLEX
Asthma since 12 years old, now Bronchiectasis , hypertension and osteporosis
i was diagnosed this year with stage 4 COPD.. FEV1....27. my age is 68
Lady Windermere Syndrome
i have asthma and I am growing out of it with running, eating healthy and exercising Buteyko.
I was diagnosed with asthma first and treated for that for three years. After countless chest infections my GP referred me to the respiratory clinic where I had lung function tests and was sent for a CT scan. The results came back as Bronchiectasis, but was still given asthma reviews every year. I was told by a practise nurse that she thought I had COPD. After being in hospital for pseudomonas colonization, my consultant told me I DIDN'T have COPD, but did have a small element of Bronchitis. I've had 2 pseudomonas colonizations over 3 years, which isn't bad really. Still don't know if I have asthma or not, so must ask consultant when I see her in February.
Forgot to mention, my diagnosis was about 10 years ago. I'm 63 now, and although I was a light smoker for 8 years, age 15-23, I've been a non smoker for 40 years.
I have CMLuekaemia which effects the Immune system so it kicks off all sorts Asthma being just one of a small cluster, of problems I lose track that could be age related ha ha
COPD and bronchiectasis
Copd and Bronchiectasis
Severe Emphysema and COPD, in both lungs
Alpha One Antitrypsin Deficiency, BLF where is the A1AD box????? Do we know? This is a disgrace! and whilst this disease continues to be hidden here A1AD will never be realised in the public domain and many sufferers of copd. emphysema will remain misdiagnosed, there has to be a inclusion of A1AD on the above check box! ...
Asthma, sarcoidosis, slight emphysema
I have emphysema
Emphysema
i have been diagnosed with chronic extrinsic allergic alveolitis for nine months
i take steroids and have been taking azathioprine
last friday my doctor phoned me to stop the azathioprine because my latest liver function rest showed my ast had risen to 290
seeing my lung specialist today
i would like to hear from anyone with similar diagnosis
regards mikesan
COPD with problems with the lung heart kidney & liver, that if I'm ill they wont be able to operate on my as I might not wake up again
Age 64. Bronchiectasis with an element of bronchitis and suspected asthma. After my last exacerbation of Pseudomonas and pneumonia, O2 went down to 84. Back to 95-6 now, but get short of breath at the drop of a hat, so beginning to wonder about Pulmonary Fibrosis.
Post pneumonia
Hello I have COPD but voted Asthma by mistake just to let you know
I am 69
69
Alpha 1 Antitrypsin deficiency
I have idiopathic pulmonary fibrosis
chronic pulmonary hypertension
I also suffer with sarcoid which is no listed
PAH, makes me feel special as it wasn't on the list
sorry should have clicked copd
I have alfa1 deficiency severe emphysema & bronchiectasis
