New to COPD, new to this forum

New to COPD, new to this forum

Hello. I was diagnosed with copd and bronchiectasis- my iPad wants to predictive text this as bronchi ecstasies which is quite funny really! This all happened on Monday. Like lots of others I've gone from life is over to bugger that I'm going to do all I can! After my diagnosis I spent a lot of time googling. My lovely daughter who has also been doing lots of googling suggested

this forum. I'm glad I took a look. I've already found out loads and you sound like a lovely bunch. My journey as I like to call it started last year August, with pneumonia and a week in hospital. I'd been in and out of work with continuing sinusitis and chest infections ever since . I gave up smoking (only 4. A day) whilst in hospital and I've never been so unwell! My last infection lead to lung failure, a very frightening ride in a very fast moving ambulance and a week in intensive care BUT also lead to investigations into what was happening to me. So here I am. I know I need to make some changes but I'm more worried about the bronchiectasis because some of what I've read said you should avoid confined spaces with people who may have colds etc. this is difficult as I'm a primary school teacher and spend my days in confined spaces with little people who often have colds, flu etc. is anyone else in the same boat or have suggestions that might help me stop worrying?

38 Replies

  • Hi and welcome Daffodil51. :) I'm an emphysema person myself so I can't help you with your question but someone will come along and be able to help, I'm sure.

  • wer'e all in the same boat, just stop worrying about it, makes it worse don't you know

  • some of us use, vicks 1st defence spray, also vitc,,im a copdr,others will be along shortly ,theres members with bronch also other illnesses,welcome to the forum,xxx

  • Hi Daffodil ( love that name) I have had bronciectasis since a baby, and am still alive many decades later.

    Of course it is better to keep away from people with colds..but most school teachers are a little immune to childrens colds , but you will find that if you do catch a cold it will normally lead to a chest infection, which will require anti biotics to clear it up....try to stay away from the children with the colds as much as you can....if you have got a child sneezing etc in your class try using Vicks 'First Defence' that evening I find that really helps to prevent colds. also build up your immunity as much as you can by taking some vitamins &/or supplements to help fight infections. I ALWAYS get a chest infection if I do catch a cold, but I try REALLY hard to stay away from people with colds. If anyone sneezes near me in a shop say I walk away ( even though it may be just hay fever I don't take any chances) hand washing and bacterial wipes also help a lot.

    But live is to be lived....bronchectasis does affect you as you get older, but I have had a long and very active life, and I never stayed away from crowds or children etc while I was younger , and I am still here :) :)

  • Thank you all for your replies. I'll get going on the vitamins. A friend said her mum, who has bronchiectasis has regular infusion, not sure what of. Has anyone any experience of this?

  • member coldrop is a bronch, as is other members, when coldrop sees your post, she will reply,keep looking in,xxx and other bronch members,hope that helps,

  • :-) thanks Twiceshy. Will look out for them x

  • the forum is on , day and through out the night,xxx 24/7

  • Not all of us will look with open eyes, though! you might hear snoring!!!

  • Hi Daffodil51, I have emphysema and autoimmune disease called lupus. The steroids I take for the disease are the same as for all conditions,(prednisolone ). These can make you susceptible to infection, without lung issues. Very hard to isolate yourself totally, especially as a school teacher. I'm new here so hopefully we can both learn some self help techniques. Welcome !!!!

  • Hi 6161 we're both newbies!

  • Hi Daffodil and a very warm welcome to you.

    Sorry to hear you have bronchiectasis and copd hun but I am glad you/your daughter found BLF.

    Like Sohara I have had bronchiectasis since babyhood and latterly asthma and inflam arthritis.

    You sound to have had a rough time, which pretty much all bronchiectatics can empathise with, and I dare say many COPDers too. Some of the symptom overlap but I notice within your post you are more concerned about the management of your bronchiectasis at present.

    As you have already been dx then I assume you have had the ct scans an are now under the care of a respiratory consultant. I feel from experience that it is important that your respiratory consultant has a special interest in cf/bronchiectasis. He/she will also be an expert in relation to you COPD. A cf resp con would usually test (for elimination) initially for cf by doing a sweat test. Arrange medication for you. Refer you to a physiotherapist who would teach you techniques and gadgets to clear the mucus from your lungs (the absolute most important thing we can do for ourselves and it has to be done daily). He/she may prescribe mucus thinners or you might want to as if con feels nebulising saline either isotonic 0.9% (same strength of saline found in our own cells) or hypertonic 3%, 6% or 7%.

    As we don't often see the same GP these days, you will find some GPs have less than great knowledge in the treatment of bronchiectasis, especially abs. The BTS guidelines suggest 14 days of high dose abs for non cf bronchiectasis, so without being stroppy we do sometimes have to be our own advocates.

    With regard to teaching I appreciate it would be a wrench to think about leaving, or not, depending what you think about the Gove maybe :-(. (My daughter is an ass head in a primary school). Seriously though littlies are proper bug carriers and I think you need to discuss this with your consultant. I know I became colonised with haemophilus around the time my little granddaughter moved up from London, which I am struggling with yet again at present. I do know quite a few of the members of Bronchiectasis R Us are or used to be teachers, so you might want to ask about this on there. I have been a member there for a while, although with a different user name. It is sometimes slow as it is not a big organisation but is well worth the wait. It was started by a young woman we all love to bits.

    You may want to arrange with your GP to have sputum sample pots so you can get a sample in as soon as you feel an infection brewing. Also you should probably ask for a supply of abs to have at home, especially useful if inf starts over the weekend or over a holiday period. Start them as soon as you have put your sample in, as to be honest until you get the results back your guess will become as good as the medics. Your GP may be fine with it (I think it's in the guidelines but couldn't sware by it right now). You may find he/she could be a bit arsy but if you feel confident with that stick out for it.

    Sorry if I've covered stuff you already know.

    Ask anything on here. The only silly question is the one you don't ask. There will always be someone around to reply. There are quite a few bronchiectatics and COPDers who are happy to help.

    Love cx

  • Good morning Cofdrop-funny name. Thank you so much for all your advice. Ok so to start I have had ct scan and have another booked to check my sinuses. I have emergency steroids and antibiotics and will be seeing copd nurse on Monday. The blf have told me about chest clearing techniques so was hoping to get more info from nurse on Monday. I've started already on manuka honey . After reading your response I've got more questions to ask? When we saw consultant on Monday last, we had a list of questions which he answered but of course, and I'm sure this is normal, we came away after the diagnosis with loads more ! What does it mean to be colonised ? Thanks again

  • Great you already have emergency steroids and abs. Also good you have a nurse - something which you would be very unlikely to have if you had bronchiectasis alone! Your nurse should prove helpful to have onside and to liaise when necessary with medics.

    Regarding physio techniques it would not be your nurse but a specialist respiratory physiotherapist you should be seeing and I am extremely surprised your consultant didn't refer you. Your nurse should be able to push that through for you I would have thought.

    Oh my goodness know what you mean about questions you need to get in in a short consultation. I still write lists, but keep them very short - bullet points really, otherwise you can get completely lost. I also know that feeling of omg I should have asked about such and such. As you say so many questions.

    With regard to your specific question about colonisation:

    Certainly with lung disease it is inevitable that we will get bacterial infections. I have had pretty much most of them over and over again in my 65 years, which have then been treated with antibiotics, as many of us do.

    However sometimes in some people a particular bug can become very persistent and cause frequent infections. This is because it is not completely killed off by the abs and hides away in scar tissue etc. It will not always make us feel ill and will not always show up in specimen. Pseudomonas is one of them and haemophilus influenzae is my particular squatter. Been colonised with it for about 2 years now and although it is treated with abs it is supposedly sensitive to, it seems to dupe us and rears it's ugly head about a week after abs.

    Prophylactic abs are often helpful in keeping these bugs in check eg Azithromycin taken not as a treatment but 1 taken 3 times a week or 1 each day. Unfortunately I cannot tolerate these. In fact I am a bit of a weirdo when it comes to intolerances to drugs, but my con is working behind the scenes with microbiologists, so I am ever hopeful.

    love cx

  • Hi Cofdrop. My cons said that the nurse would refer to physio. Do you have any probs with your sinuses? Mine have been bad since December ? X

  • Yes hun - goes with the territory I'm afraid. I'm a right post nasal drip! cx

  • You're actually really funny!!

  • Just a thought and couldn't edit at the bottom.

    It would be helpful as you are working with bug carriers if your cons referred you to an immunologist. (It might be your friend's mum's infusion is more to do with her immunity and therefore helpful to her bronch ((just a guess)). cx

  • Hi Daffodil51, welcome to the site. Your post caught my eye what a close up of the cat too, magnificent.Had to laugh at your prediction text quip. I have COPD and everyone of us is different in our symptoms and treatment. So I would say fire away with questions as I am sure one or other of us will have been that way and have an answer for you.

  • Hello Katieoxo. Thank you for your response. I've been told to exercise as much as possible. What kinds of exercise do you do and for how long?

  • I go to a supervised Gym exercise program for those with COPD I do about an hours varied exercise specially selected for me by a rehab team. Otherwise it's mainly walking at my own pace, a bit each day is better than none , I had to be referred by the GP for the Gym or a nurse can do it. I also do exercise at home designed to keep my arthritic joints going got the details from OT department at hospital. It is mainly picking up light weights and arm and foot exercises like standing on your balls of the feet and stretching your arms up the wall as far as you can go. Even twiddling your toes while seated can help.So there you go some food for thought on exercise speak again soon

  • Hi Daffodil60, I completely agree with Cofdrop, I've had Bronchiectasis since I was three, 68 now. I also caught colds and flu from people at work and in shops. It's a hazard when you've got this. Not every cold/flu though. I take manuka honey 25+ everyday, VITD3, and Vit C. It all helps the immune system. I did a voluntary stint at primary school for 4 years as teaching assistant and didn't catch any more germs than anywhere else to be honest, I did wash my hands a lot, and encouraged the kiddies to wash there's after toilet etc. It's the adults who cough and sneeze all over you that are the pests. Good luck

  • Hello. Thank you for your response. In terms of eating manuka honey, which is soooooo expensive, I have started but I was putting it in yogurt. Is it better to take it straight off the spoon? How do you have it?

  • Welcome Daffodil (my fav flower ) agree with above . I manage a childrens nursery so i can sympathise with you re confined spaces bugs etc. Ive recently been diagnosed with chronic idiopathic bronchitis and i also have rheumatoid arthritis the meds i take lower immune systems . This yearvhas been my worst in five years. (Been off sick since beginning Dec) ive got rescuecmeds to take at first sign of infection and will be seen by a gp on same day if need. Manuka honey 25 antibacterial wipes and spray plus first defence spray when ever i go out in public . Im due back at work on phased return after Easter its the winter flu months that are worse for me and like you little people spread germs quickly .....could you do a lesson on Hygiene and bugs etc to reinforce good hygiene practice .....there maybe children in your class who are suseptable to picking up germs through asthma or other . Take care love Judith xxx

  • Thanks tiger shay that's a good idea. I have quite a few children with asthma.

  • as a bronchie ectasies! person my self you do have to keep away from any one with any infection, i know this is sometimes impossible as i have 8 grandchildren, but one consolation you can not get the same infection twice, i also have sinuses problems but my ENT consultant could not help me with this (he did try with lots of medications) as this came with having bronchiectasis, i do find when i am on a course of antibiotics my sinuses does ease of for a while. love your picture looks like me when i go out with the dog,

  • ' but one consolation you can not get the same infection twice,' [quote]

    friendly I am interested in your reasoning behind this statement - could you explain further hun please? cx

  • yes how does that work out

  • Well i did read in my local paper that there are over 200 different viruses that can cause colds, and there are not as many viruses that cause the flu. so i presume you can not get the same viruse twice, hope that explains my logic. Hope i have a germ free day to day i am of to see one of my grandchildren, hope your day will be good also.

  • Thanks for reply hun. By infections I assumed you were talking about bacterial and viral, and whilst there may be a few you are unlikely to get again, there are unfortunately, as I know to my cost, and I am sure as a fellow bronchi you will know too, infections which think nothing of attacking you again and again because we are such wonderful hosts.

    Hope you have a lovely day with your grandchild. Blimey 8 grandchildren - expensive time for you at Christmas then. I've only one so far ..........

    love cx

  • Call the helpline its better than google because that can make you think you have things when you dont.


  • Hi daffodil (springlike name!)

    I was a teacher too when I was diagnosed with asthma. I went to hospital with a chest infection which the school head didn't regard as good. I was made to leave by the end of my first year at that post.

    since then I was diagnosed in 1994 with bronchiectasis. If you think of ecstasy: it really means that some of your alveoli are overstretched and less flexible. As they are "more open", they will have more mucus produced. This will attract bugs more often.

    OK. Now you know what it is. yes, you have to keep away from infectious children - which is quite a conundrum when you are a teacher. (I was glad I left, because I couldn't have sustained the work that was asked of me).

    You need to be cautious, stop smoking by all means (this will help you maintain your health and not deteriorate) (I was diagnosed because, the only reason that could be advanced, of passive smoking when I was a boy with my parents. My father smoked heavily).

    You need to maintain a good degree of fitness. Difficult to go to the gym when you are in that job. Yet, fitness is paramount.

    There's a lot to think about. The disease is not going to go away, BUT according to how you live (smokeless, good fitness, good sleep, etc.) it will progress only a little - and that will be for you to feel how you are doing.

    As I don't know the state where you are at, you may stay quite active in your career.

    I do remember that I had difficulty in taking the children on a trip to France, as I found difficult to follow the others because of my shortness of breath.

    I'll close now. There's more to it, i.e. in terms of exercises, medication for instance. But mull it over and come back with more questions.

  • Hi helping mic. Blimey good to talk to you Lot! So much info. Did your head force you to leave? I am hoping to negotiate reduced hours maybe and not class based. I am lucky in that I have a very supportive head - so far but she doesn't know about this diagnosis yet.

  • Yes. he could do this because I had only done one year. If you've done more than two years, she cannot do this.

    What I should've done was to join a strong union. I was affiliated to a weak one and the man who came with me,was inactive!

    Before talking to your head about reducing time, check it out with some expert so you don't get in trouble.

    As some others said, you can go on actively for years. Take lots of advice before committing yourself.

  • Ok will do thanks for that

  • Hi Daffodil51. the only rule with Manuka Honey for health is do not heat it up. You can have it with anything, I usually have a spoonful in the morning.I did have a private blood test which was done at Birmingham Hospital Lab for Vit D deficiency, my reading was only 13 out of 100. Very very low. Now take VitD3 and it has made a difference. You have to take magnesium supplement as well, for the body to take up the VIT D, but don't take it at the same time because they use the same receptors and will cancel each other out, take 2 VIT D in morning and one magnesium in afternoon. I know the honey is expensive but it does help, I usually get three jars off the net, get discount for buying more, and they last for about 3 months. When you think of the cost of over the counter remedies when you do get infection it puts it into perspective and the honey is one of the few things that keep psuedomonas at bay. Good luck with the reduced ours etc, try not to be too distressed about it, you're living with a condition not a death sentence, it can be managed.Do what you can, have a go at what you think you can't and bugger the rest. LOL xx

  • It's true that heating any honey will diminish its peroxide activity, however . . .


    '.You can add Active Manuka to hot drinks such as tea and Coffee (unlike other honeys with hydrogen peroxide, which is easily destroyed by heat and light, Active Manuka still retains most of its anti bacterial properties, even after boiling or moderate dilution)'

    Apart from that, I've done a lot of research into supplements, but have never come across the idea that magnesium and vit D taken together 'cancel each other out', nor can I find it when I look for it . . .

  • Thanks for that. I think in terms of reduced hours I'm thinking ahead, maybe too far, but thinking about how to find the time/energy to get some more exercise. I'm not a couch potato by any means but I know that some non class based posts are on the horizon and that might help with work load. Ive had so much sick time off in past year and nobody has said it, but i know it's been really disruptive for kids and I've been really guilt ridden so if I put things in place that will help me manage this condition everyone should be a winner- that's my thinking. Don't worry, I'm not thinking its a death sentence, I'm a very optimistic sort and a real battler!

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