Having just read derrylynne's blog, I will be sorry to see him go. He was already here when I joined a year ago and being in a very desperate state after my dads' dreadful news, I came looking for help, advice, comfort, shoulders to cry on as such. Derrylynne was just one amongst lots of people who offered all the above and have continued to do so ever since. But there are quite a few who I valued who have left who have said exactly the same, that this site isn't the same. I have to agree, but not necessarily in a bad way.
We are all free to write about whatever we want and wether we agree or disagree about the content, one thing I am sure we can all agree with, we would all be lost without it. But the one thing that keeps annoying me time and time again and it happened twice in derrylynnes' blog, this site being referred to as a copd site and it is not. Please, please, please can we stop doing that and think of those with other lung conditions that are valued members of this community. It may also be worth you reading about the other conditions if you have time, especially as we are all too willing to offer help and advice when asked and sometimes the advice isn't always accurate, if they come from a copd perspective.
I mean no offence to anyone and genuinely hope none is taken. Those who know me, know I always have the best of intentions and whilst I am fighting a battle in memory of my dad, ignorance of Idiopathic Pulmobary Fibrosis and other lung conditions are partly the reason I believe why my dad is no longer here.
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tanyamarie
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Hi i agree with some of what you say but not ignorance, other diseases / disorders are discussed on this forum, one thing i have noticed is that if a question is posed that none of us can answer, one of us will direct that person to the blf phone number for help. Sorry if this offends you none is meant.
I don't take offence but how can you not agree that there is great ignorance with lung conditions? It is there everyday. It affects everyone whatever condition you have which is why they are often referred to as the armchair illnesses. On the surface whilst you are sitting, you often appear to be perfectly fine but the first movement of any kind often brings great pain, discomfort and breathing difficulty.
Every week someone new comes on here saying they have just been diagnosed with a lung condition and have no clue what that means. It is often not explained to them by the medical professionals and when it is it is often so overwhelming alot of information isn't taken in, quite understandably. A lot of people live with a lung condition that has been mis diagnosed because the doctors themselves don't really understand what is going on. There is so little known about various lung conditions because there is so little research done compared to other conditions including heart and cancer for example.
And finally, just a note on a man I met at a Breathe Easy meeting last year. He had severe emphysema and had never smoked a cigarette in his life. How did he get it? The doctors assumed he was lying and had or did smoke. He said it was seen as a dirty illness, all his own fault and he should just get on with it. I find that appalling and quite an ignorant attitude. Everyone deserves to be treated fairly and with respect and dignity and yes there are a lot of examples here of the excellent care some get from their GP's and Consultants etc but there are far too many who are not.
well said and thank you,tannyamarie you have put into words exactly what I was thinking.The BLF is the only UK based charity that aims to provide support for all lung conditions.
Well said Tannymarie. I do try to remember that this site covers all lung conditions, not just COPD. I do, however, have to admit to an ignorance of idiopathic pulmonary fibrosis. I will rectify that now and go and look it up Bob x
I noticed, tanyamarie, that copd was constantly referred to, but I didn't say anything at the time. Lot of discussion going on.
Tanyamarie I am sorry I am guilty ascharged I did at one point refer this as a COPD site and I should know better as I have bronchiastasis (see I can't spell it) but I find it easier to say COPD and one of my friends has CF so you are right we should be carefu. So again sorry
I too would be sad to see Derrylynne go. He has had and still has much to offer this site.
I have tinkered with my post on Derrylynne's thread as the some of the reply applies here.
Thank you tanyamarieI for your comments regarding this site being for peeps with any lung disease. As we know all lung disease is horrid to live with. You have your own experience hun with your dear father having IPF and many folks on here have bronchiectasis - this is only 2 lung conditions amongst many. My concern is I would hope people with all lung conditions, especially newbies, will feel welcome and not be put off thinking from posts that this site is exclusively for copd, as important as this condition is. We really don't want to make anyone feel excluded.
I agree there i s a lack of knowledge about a lot of different lung disorders. But i still would not go as far as to say its ignorance, i only gave up work recently and under protest at that. Grand metropolitan hotels were my employer and being a relief chef my job took me all over the country sometimes for months on end, but wherever i was i always registered as a temporary patient, when i mentioned copd or emphysema, almost all the doctors i saw had dealings with and were aware of the condition, those that didn't refered me to GP who did. Maybe I've just been lucky.
Your post has been notified on my email as a reply to my post hun. I have never mentioned 'ignorance'.
Glad you have been lucky enough to get good treatment. It makes a nice change to hear this as this has not been the experience of many bronchiectatics I know, but there lives have been greatly improved once they have a consultant who specialises in cf/bronchiectasis.
I think alot of the problems arising from misdiagnosis is too many people just take their gp,s word and/or are frightened to ask for a second opinion. I recently had my third ( sorry this is not directly about the lungs but it does play a part in my condition) angiography, so im pretty well aware of how to read the results, the cardiologist came to see me after and told me that my pulmonary artery was to blocked to put stent in, but not bad enough to warrant a by- pass. I could see my self it was not as bad as he was saying so i insisted on a second opinion guess what, i was right, just waiting now to have the stent done. Just goes to show though, alot of what had been talked today can be avoided, just by being aware yourself of what can be done if you push for it. Sorry for harping on.
As you must know by now Tanyamarie I share your views and concerns and do at times wish that we could just refer to this site as being one for "those with or caring for someone with a lung disease".
However, trying to be generous, I do wonder whether the Healthunlocked index of communities has a small part to play in this in that if you look in the alphabetical index you will find this site under SOME specific lung diseases, e.g. Asthma, 'umbrella term' COPD, Lung Cancer, but all the rest you will only find under "lung disease". If you happen to have COPD & look at the index you would find it under COPD & perhaps would therefore assume that it is just a COPD site?
Even if you look on the British Lung Organisation site itself, you will not find all lung diseases listed.
As I have Ideopathic Pulmonary Fibrosis, I am obviously interested to find out what I can about that particular disease. I also have Ideopathic Pleuro-parenchymal fibro-elastosis and as that is suffered by only a handful of people in the World, can I realistically expect anyone who doesn't suffer from it to either know about it or to even know where to look to find out about it? Probably not!
I think that most people on this site TRULY want to support each other but sometimes we do get a bit blinkered by the illness in which we have a particular interest . I suppose that proves we are just human and must just try a little harder in future.
We do get blinkered, you are quite right and none more so than me when it comes to IPF. You take care too x
• in reply to
Hi Mapal, if you look to the right on the BLF web page link below, you will see the list of all lung conditions (under the title condition finder). As you will see COPD is just one in a very long list of lung conditions:
I think a lot of people mis understand that COPD doesn't cover all lung conditions
• in reply to
I was aware of the list to the right thanks but as I said it does NOT contain ALL lung diseases, e.g. one of the ones that I have Ideopathic pleuro-parenchymal fibro-elastosis does not appear, but as it is very rare & only recently classified I would not expect it to.
I do agree with you though that some people (sadly some medical staff also) do not apppreciate that COPD does not cover all lung diseases and the BLF list does cover very many others.
Where does it say that Derrick is leaving? I have been a follower of his Blog and nowhere have I read that he intends to either discontiue his blog or leave this site. Maybe Derrick can respond. Stay well. Martin
On Derrick's thread Open Letter to Moderators. His second post states 'consider this my last post', sadly. I too will miss Auntymary's wisdom and caring.
For anyone trying to follow all this - Derek's thread 'Open Letter to the Moderators', and some others related to it, have been moderated - or rather deleted in full
Just to correct Gordon - I have not deleted any threads - perhaps the author had second thoughts about the original topic of his thread and so decided to delete it himself? Which is a pity as I'm sure I would have enjoyed reading it.
Hi tanyamarie, you are right of course, this site is not all about COPD, but as it is a "blanket" term for different conditions I think that is how many of us describe our condition, I don't think anyone here would try to exclude any other lung condition.
I know I've only been here a short while, but perhaps as COPD is the illness most often spoken about it gives the impression that,s all "here" is about.
All any of us can do is speak about our own experiences, & perhaps it is a lack of knowledge on our part that we can only offer advice on the condition we live with & I agree much more needs to be done to raise awareness of all lung conditions.
Speaking for myself, I would be uncomfortable commenting on a condition I had no experience of, so unless someone with something other than my COPD (& here I,m embarrassed to say, I dont even know which condition exactly I've got!) needs anything other than general support I don't offer any advice or opinion,
Perhaps it would be helpful if we all discussed what we have, or those who care for others could describe the condition that affect their loved one, then that way we all educate each other? Karen xxx
Hi Karen,
I was diagnosed with mild copd 2 years ago,not smoked for over 3 years. In February I was told to have an x-ray cos was getting some chest pains.that showed bit of shadowing in both lungs so have just had CAT scans.( results this week ).also under active thyroid so put on a bit of weight which can't shift for love nor money, still active as can be.
I joined this site because I am scared of what will be and wanted some answers and comfort from others who ' have been there ' .
I have 2 boys and 2 girls, 9 grandchildren with another on the way ( one of them has been pregnant every year for last 8 years ) rabbits spring to mind !!!! I haven't told them anything,all they know is dads getting old isn't he !!! .
Frightened of the future ??? You bet I am.
So,I appreciate everyone on this site,I respect you all for the strength and belief you all give.i hope we could all live happily forever.
Well put tanyamarie and sad to say many people are not getting the right information for their condition from the people who are supposed to be treating them and that is why this site is so valuable. IPF and other lung conditions are terrible and more should be known about them and done about them but that is not always the case.
Sadly too, people do get and die from emphasema without ever having smoked in their lives and that can be because of their occupation which should be taken into consideration. I get a lot from this site as a carer and it is thanks to people like you and others who are kind, considerate, supportive and funny too at times. xxxxxxxxxxxxxxxx
Yes I agree with what you said tanyamarie. I only know a bit about asthma and COPD. I only comment on that. A lot of the other lung diseases I don't understand. I am very aware that not all of us have COPD and I always use the blanket term 'lung disease'.
Can't believe auntymary has left and derrylynne. Anyone know why?
I thought COPD was applicable to most lung complaints, I was diagnosed last September but I am still a little bit in the dark, unfortunately our surgery does not have anyone who can give me an understanding of my condition this is the reason I joined this site.
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