Bronchietisis

I have been searching hard to see if these two are one of the same, this is my findings, according to my GP who has just done an up-date with the British Medical Council on a course of recent findings the 2 are clearly not one of the same. I have Bronchietisis in a localized area due they believe from both my children contracting whooping cough at the same time. ( ex smoker as well I should add for all my errors of life )

I was concerned this was COPD and on asking my Respiratory Dr, she also confirmed that this is not the case, in fact if localized in a very small area it most often remains the same and is most definitely not COPD. Just thought that I wanted to share this with fellow patients to give some hope and possibly a few less sleepless nights.

I was also told to stay off forums as sometimes people tend to share scary stories, and we are all different and these stories can freak you out and they are not relative to your individual case which is unique to you.

Stay well, follow your gut feelings when it comes to infections and feeling poorly.

23 Replies

oldestnewest
  • I do agree there are some scary stories but it's right that we are all individual. I have 27% lung function but seem to be a lot healthier than some with 50% lung function.

  • Yes there are some scarey stories but we have to realise every individual is different, I think these forums are life savers! When I was first dianosed with sarcoid 42 years ago i felt so alone, however when I found out i had bronchiectasis about 10 years ago i was able to find so much info and even able to discuss some of it with my con!

  • Hi Birthday

    I am pleased for you your bronchiectasis is localised. However localised, mild or severe bronchiectatics need to do a lot of work re regular clearance of mucus from their lungs and be very aware of the signs of an onset of infection.

    I hope you don't mind me saying this but I'm not keen on the title of your thread. I don't think of respiratory disease as one condition V another, nor that one is worse or better than another. All respiratory disease is difficult no matter the label. It has been known for some time that COPD includes emphasema and bronchitis - bronchiectasis is a condition in itself.

    Some docs do dislike patients going onto the internet and there are some dodgy sites and from that point of I agree I have to say. However if peeps stick to the reputable sites relevant to your condition Asthma UK, Cystic fibrosis, Bronchiectasis R Us, COPD etc you will learn so much from peeps who have had years of experience and most people are not stupid and have enough common sense to pick out what is relevant. It can give you short cuts to knowledge which some medics don't mention unless you ask. BLF also has loads of peeps who are very knowledgeable and supportive and no matter our condidtions are different one from the other, many of the stuff we experience overlaps and this gives us all a special bond. There is also help available here from nurses and benefits experts who are also very knowledgeable and their help is priceless.

    I have seen first hand over the years newbies to bronchiectasis who have been distressed and overwhelmed by their diagnosis and these same people have soon learned to cope well due to members support and friendly advice. No scare stories, in fact quite the opposite.

    I'm going off on one sorry about that Birthday - just my opinion that's all.

    I wish you well and hope you don't take your docs advice and stay with us. If not I wish you and your family a lovely happy Christmas.

    Love C xxx

  • Thank you for your comments, I agree but for people with a new condition they are very scared and anxious, it is at that point through anxiety that they can be overcome with forums and are best to stick with Dr's and consultants advise until they reach a point where they grow into the diagnosis and then can profit from others experience and hopefully sound advise and not scaring people which did happen to me 18 months ago when I joined a forum.

    I now know better and follow the specialists and keep quietly on the side lines but watch with a keen eye. I do hope whatever the complaints that everyone stays well over the cold snap and looks forward to Spring soon.

  • Hi

    Really sorry you had such a bad scary experience. I am not surprised this has left you with a negative view - I'm sure it would have done the same to me.

    However I think we will have to lovingly agree to disagree on the benefits of reputable forums and the benefits especially of solid info, support and reassurance at the point they are at their most scared and anxious.

    Oh I just can't wait for spring - nice and warm and the lovely light evenings.

    Keep well

    Love C xxx

  • hi cofdrop,i have bronchiectasis and copd (besides loads of other ailments) i agree with you entirely on every count,particularly this site,i have learned from tips etc.how to cope with this vile debilitating illness. merry christmas to you and yours and to everyone on this site.xxx

  • Thank you you too xx

  • Chronic Obstructive Pulmonary Disease I thought was an umbrella to cover all breathing problems. I think for me it was the ' chronic' that scared me until I was told it doesn't mean death but on going in different ways for different people.

    I don't look stuff up on the web because I tend to only read the negative. I like this site for the positive vibes and

    the tips from other members.

    Big hugs.

    Gina x x x

  • Hello Birthday1, I too have bronchiectasis and it is chronic and obstructive so your findings are interesting.

    I would like to say my condition is a great deal better since joining this forum in August due entirely to the knowledge passed to me from cofdrop and support from Mocarey, Puff and many more, they really are special people in a special place.

    su

  • Thank you everyone for your comments and I wish you all a good Xmas on this special forum, I can see people are genuine and have gained support here for whatever Chest problems they have.x

    Gina I know what you mean about the word Chronic, its a scary word, but Asthma and Epilepsy can be classed as Chronic as well when you first hear it your right it figures immediately as something very sinister, once you grow into the diagnosis whatever it may be it becomes better as then you have to take stock and follow healthy management like many others we all have something going on. x

  • This is a question please for anyone wanting to answer. Do you all in general have CT scans annually and Xrays annually to review your conditions?

    I am thinking of asking for another Xray just because I would like one to review, my specialist tells me that CT scans are not needed annually and usually Spiro results are sufficient, how do others feel on this monitoring process ?

  • A consultant I used to have was xray crazy. I am happy to say the one I have now is not and I only really have one if I go into hosp. although I have no doubt he would arrange one if he thought it necessary.

    There was a space of 10 years between one ct scan and the next and that was only done because my xray showed up a couple of shadows - turned out to be remnants of infection.

    I do have spirometry at every clinic visit.

    Had lots of radiation thrown at me over many years - not just for respiratory so I for one am pleased if they keep them to a minimum for me.

    Will be interesting to see how others feel and how frequently they have xrays and ct. Good question Birthday.

    Love C xxx

  • Hi, Lets see what we get on this one, I note that you know the Royal Brompton well in your comments, do you think they are one of the better London Hospitals in respiratory care ?

    For me nothing showed on an Xray it was only when I went for a one off CT scan 12 months ago for a ladies problem that a shadow showed up, then it came to light in a small local area of Bronch, I do have spiro every 12 weeks only because I have a good specialist and she likes to care for me as I am a carer for my young daughter and I have to keep fit really if I can, she is signing me off in March after the Winter but I am going to ask for a connection to the Brompton to have if I need in the future.

    Not sure if she will give me a chest Xray in Dec but she may if I ask nicely just for reassurance but she says the Fev is the key for her and

    lung function results, for me its another Xray or possibly another CT scan to keep me calm x x.

  • Hi all, I have spirometry every 6 months. Only had one ct scan for lungs in 2002.

    Chest Xray every 10yrs approx. My consultant and physio is constantly available by email.

    Was refused transfer to Bristol CF clinic but I have been told to ask again "armed" with info from cofdrop.... I am hopeful.

    The Lung Flute mucus clearing device is awsome, keeps my lungs clear as possible for us but it is not available on NHS or UK far as I know.

    su

  • How interesting, for me I have to say nothing has ever come up from my chest, I am told I am just one that brings nothing up but this is interesting and I have read about it on Wikipedia, is the hygiene side of it good? it looks simple, I don't think I would need this daily but for reserve it could be an excellent tool to have. Where do you purchase? is it

    lungflute.com is this recognized by Dr's etc I have not heard of it before ?

    I am seeing my specialist 2 more times this Winter so I am going to ask her. Sometimes simple inventions make so much sense. Thank you for this does cofdrop endorse this? xx

    Can you tell me why you ask to see a CF specialist rather than an expert of Bronch? I assume you maybe have another respiraratry problem possibly and not Bronc as I do.

    My specialist is a lecturer and renowned expert in Bronch I am lucky but moving close to the Royal Brompton hence I asked about care in that Hospital as I am 5 mins from it.

    I cannot understand why the NHS does not offer Lungflute to keep poorly people well and out of hospital keeping wards clearer? also used for Asthmatics as well? so NHS costs could be cut surely if people can control lung hygiene like this clever method?

    PS finding this a good forum after a very bad experience before, I hope to stay now.

  • In answer to your CF question B, Some people with cystic fibrosis (CF) develop bronchiectasis and about half the people with bronch have some degree of CF.

    I have many symptoms of CF since birth but my (loving & reclusive) parents tried to treat me at home, they did not take me to a gp so I was not diagnosed early.

    Years after mum died half my left lung was removed, and sinus operated on twice I was 23. I need to "drain" my lungs 3 times a day and have had a lifetime of many infections including Pseudomonas aeruginosa. I am unable to digest fats but despite all this I have found ways to deal with it.

    Asked many times for a genetic CF test but the answer has been "avoided"

    they did a salt sweat test but did not give me the result except to say it was not conclusive. My family and I would like to know for sure, as anyone would ? Also I have found 2 people in my family died of CF, one young and one much older.

    Birthday1 I hope my reply does not cause upset to you or anyone else and hope your lungs are good, they sound quite good.I will let you know how I get on with my next CF test request in January.

    su

  • Hi Birthday

    I have no experience of the Royal Brompton personally. It is though the largest heart and lung centre in UK and has an excellent reputation. I do know some bronchi friends who speak very highly of the care they have experienced. One of my friends posts on BLF and hopefully will be able to give you her opinion first hand.

    I have never used a lung flute. Zube is defo the lady to speak to on this subject. I am impressed by the results she has had, but it's not down to me to 'endorse' something I know little about.

    Really glad you are staying.

    Love C xxx

  • Thank you for this information good news about the Brompton, I just had a feeling many of you had used the flute, I will definitely ask the team in 10 days what they think about it as it seems very good in principal. Bye for now S x

    Hoping to hear from others on how many Chest Xrays and CT scans they have for general chest maintenance soon.

  • Hello again Birthday1,

    If you ask your specialist team about the Lung Flute they will probably not know or be able to recommend this wonderful invention yet. It is prescribed and used in US but not in UK yet.

    All the details about it are on my blog... "My Lung Flute Mucus Clearing Device arrived from Hab Gmbtt Germany last week"

    If you click on my zube profile pic it will show my 2 blogs. it also comes up on google!

    I ordered it from lungentrainer.de/online shop and it cost about £44 but use paypal as they ask for payment in euros.

    Very few people here have them, it was only by chance I heard about it.

    The flute works by silent resonant frequency which is the same frequency as mucus, 16-25Hz . this works in the same way as an opera singer breaking a wine glass when she hits the right note. anyway, have a look on my blog as more is explained there.

    I also use a "pep device" and an acapella which cofdrop recomended, they also work but for me they are no where near as effective as the flute.

    I too am pleased you are staying with us, it will be interesting to hear how you get on.

    su

  • Just want to add you are pretty lucky to have a bronchiectasis consultant - few and far between. Our brothers and sisters with cystic fibrosis have many other problems than we do and often produce much thicker and stickier mucus with their bronchiectasis. I would always choose a respiratory consultant with a special interest in cf as they are so clued up about non cf bronchiectasis. Also specialist bronchiectasis nurses are very thin on the ground, and most clinics with a good cons at the helm now have cf nurses in their bronchiectasis clinics.

    Love C xxx

  • Hi, I think that your right on this my specialist does have a huge interest in this area and her Nurses who have been on her team for over 20 years as I am told are all very clued up. I do so hope when I move to The Royal Brompton I can find such a good team, it will be my local hospital but I have read good reviews on this Hospital. I note what you mentioned on CF, when I see my specialist before Xmas I am going to ask her for a recommendation consultant who has expertise in Bronch I am hopeful she can guide me.... I am sad that some people have not had the best results in this with care and must feel afraid and lonely at times.

  • I can pm the cf consultants at Brompton if you would like me to. X

  • Thank you that would be good if you would like to share with me?

You may also like...