Hi folks, I've been checking out the posts on here for a couple of weeks now, and I am really pleased to have come across the site. From feeling quite lonely and miserable with my COPD I now know that there are people who truly understand what this illness is about. So, a few lines about me. I am male, 65, and I was first diagnosed with COPD about 10 years ago. Until very recently it rarely really troubled me. I took my medication regularly, always carried my Ventolin with me but hardly ever needed to use it. Sometimes short of breath on hills or stairs, but that was it. All changed about 4 months ago. I picked up a bad chest infection, and could hardly breathe or move. Had a home visit from GP. She said hospital needed, and called ambulance. Kept in 3 nights, IV antibiotics, nebuliser and steroids. Discharged with visits from nurses (hospital at home service) and soon right as rain. Until a month ago. Had to go into hospital again, for 4 nights. Even more unwell than the first time. This time I was loaned a nebuliser and oxygen concentrator, and am now on different medication.... Symbicort, Theophylline tablets, Spiriva and Mucodyne. I'm pleased to say that I finished with both the nebuliser and oxygen 2 weeks ago, and (touch wood) seem to be doing o.k. without them. My breathing is a lot better, think I'm coughing less and more easily. Still get very tired, but that's to be expected. Had much more energy when on steroid tablets, but finished those as well. Spotted on here that it's possible to be prescribed regular steroids, something I'm going to ask my GP about. wouldn't have known that without this site, so thank you.

Sorry this has been so long, but there you are, that's me! Thanks again folks, Bernie.

P.S. Hope I didn't offend any builders with my snail/builder joke......

35 Replies

  • Welcome clock65, nice to hear from you and so pleased you are getting something positive out of this amazing site and its brilliant people. A good idea to chat to your GP about continuing steroids and see what he says. Good luck to you and stay as well as you possibly can. Take care and hope you have had the flu jab. xxxx

  • Thanks for your welcome, sassy59. Very kind of you. I'veb

  • Right. Try again! Sorry, hit wrong key, everything went awry. Thank you for your welcome sassy59. Much appreciated. I will be checking with my GP about the steroids - I realise that there are pros and cons. Re flu jab, not missed it for years now, but resp nurse has told me to hang fire for a while because of recent course of steroids (or was it antibiotics? One or the other). Thanks again.

  • Welcome Clock -you certainly will learn lots from the super people on here. I have been on the site a few months and can't believe how much I have learned and how reassuring it is to know I can sit and "talk" to people who understand about the illness. Sorry about your infection. The past 16 months I have been having them every other far, my antibiotic and steroid tablets see me through. I keep a set of them at home Just in case I start an infection at the weekend. Each time I have one my lungs just don't get back to the way they were and it knocks me for six. I have COPD emphysema. Like you when I was first diagnosed (about 11 years ago) I wasn't feeling too bad at all and when I went to the Pulmonary Rehab clinic I looked at everybody else there and thought, "Oh, I won't get like them" :p ha ha......I went back to the clinic this year and Wow have I gone downhill :x Of course, we are all different, and I am older than you. But, do take your infections seriously (seems like you have super medical care where you are) Last year I convinced myself I had a little cold, but by the time I got to the surgery I was ready to pop poor nurse looked utterly terrified. Nebuliser, steroids, etc., etc....I begged her not to call an ambulance and she managed to sort me out bless her. I won't let that happen again! First signs of cold, cough..just anything...I am off to the surgery!! have you heard of multi-dosing with your Salbutamol inhaler?? You can inhale anything from 2 to 10/15 times if you are really fighting for breath. Learned that at my surgery and then the clinic...something worth asking about. It has REALLY helped me at infection time. But, of course, check with your medical people.....listen to me, lecturing you and it's your first post - ooops! sorry :p I'm quite nice really :p Sending all good wishes - take care of yourself :)

  • Yet another kind welcome. Thank you Louisiana. I am still finding my way around this remarkable resource. I certainly agree with you about knowing that there are others you can "talk" to who will understand. I'm so sorry to hear that you have been so unwell lately.... my very best wishes to you.

  • Welcome bernie, u've joined a great site with an even better group of people, good to hear u've managed to stay well for do long but sorry to hear about ur infections and hospital visits.

    There is lots of different conditions on here but all lung related so advice and tips and best of all support off everyone is amazing. Take care Sonia x

  • And a big thank you to you Sonia. You are all very kind. I am very grateful. This site is now firmly in my favourites list. As I wrote above I am still finding my way around. I fully intend to check in every day. Thanks again. Bernie.

  • Well bernie U'll find someone on at all times as we come from all over the world, ur never on ur own with us lot. Take care x Sonia x

  • That is great to know. Thanks Sonia.

  • Afternoon and welcome.

    So glad you found us you know where to come when you need advice, I think between us we could lecture on the subject. Joking aside someone will always be about to help if you need it, share any info on new drugs treatments etc or just to chat.

    Good luck.

    Kim xxx

  • Thank you Kim. I'm very pleased to have found you! Came across the site by accident. I was looking for something to do with COPD, can't remember quite what it was now, and this website was mentioned. I clicked through and here I am. A very happy accident! Bernie.

  • Hi Bernie, and welcome to this fantastic site. I joined under a year ago and have learned far more here than from any doctor, and there is always someone around to talk to. Sorry about your recent infections and stay in hospital.

    Can I draw your attention to the homepage of this site where you will see a red balloon, and if you click on it a helpline number will come up just under it. This helpline is manned by respiratory trained nurses who are a mine of information and advice. If they are busy they will take your number and call you back, and talk to you as long as you need to. They have been of enormous help to me, so it may be worth talking to them before you see your doc, as they can guide you on what to ask him and suggest different options.

    Keep well,

    hugs from Huggs xxxx

  • Hello Huggs, and many thanks for your advice re the helpline number. I didn't know about that. Saw the balloon but thought it was just a logo. Excellent information, much appreciated. About the doctors; I find that they just don't seem to have the time to explain things. Having said that the care I have received lately has been fantastic, I cannot fault it. However all the medical staff, doctors and nurses, seemed to be working flat out. And 12 hour shifts! Thanks yet again, Bernie.

  • Hi again Bernie, It seems as if I have misled you re the red balloon logo!! lol A few months ago they rearranged the site layout and before that you could click on the balloon and get the helpline number. I just tried it and it doesn't work. You see the big banner on the home page explaining a little about BLF, then there is a blue link which says 'read more'. When you click on the link the helpline number is revealed. It is 03000 030 555. Sorry for the confusion, but it is worth talking to the nurses. If you click on the link you will also find out more about the staff and how BLF is run.

    Hope you keep better,

    hugs from Huggs xxx

  • Thank you Huggs. I've checked that out.... sorted!

  • welcome to the site bernie,:) great advice on here, and many a laugh,

    it sounds like you've been through the mill of late, but glad to hear your a little better now,, maybe one tip,, watch the steroids,, although their a life saver at times, they have a lot of side effects,, keep popping on here from time to time i'm sure you will enjoy it, best regards bernie, and wishing you all the best,,jimmy :)

    p,s your snail/builder joke was a cracker [pardon the pun :D ]

  • Hello Jimmy, and thank you for your welcome. I will indeed be careful about the steroids. Won't do anything without advice from my consultant. Appt. next month. Glad you liked the joke!

  • Hi Bernie nice to meet you and welcome to the site. I can't add to the excellant advice you have been given, just wanted to say hi. x

  • Thanks coughalot. Very kind of you. I am beginning to feel at home here already.

  • Hi Bernie......greetings and welcome. You have come to the right place. You can learn so much. There are plenty of laughs to help the days along , you will find a few of our group are great wits.

    So don't be afraid .....your not alone anymore.



  • Good afternoon Budgiesmom, and thank you for your welcome. I am so very pleased to have found this site. Bernie.

  • You are on the best and welcoming site by far. As you will see we all have our own problems and all deal with them in different ways, but the key is you must take control of it not it take control of you.

    I have bad days but I will always try and turn that around life is to short.

    Be Well

  • Hello Offcut, and thank you. I read lots of posts before introducing myself. The main impression I gained was that, although some members were very unwell, everyone seemed to have a great sense of humour. Laughter may not necessarily be the BEST medicine, but it certainly helps. I hope today is a good one for you. Bernie.

  • Wishing you a speedy recovery Bernie. You sound very much like my husband - for about six years after diagnosis he was fine but then a bad infection hospitalised him. The good news is that actually he is OK now - four years later! He still has COPD but we have emergency antibiotics and steroids at home now - so at the very first sign of an infection he starts taking them. It might be something to ask your doctor. Take it easy - it takes a while to recover from such nasty infections. Lots of love TAD xx

  • Hi TAD, and my thanks to you. Having been diagnosed so long ago and not being too troubled by my COPD, it certainly came as a shock to the system to be ambulanced (just invented a word!) to hospital, with oxygen, nebuliser etc.. Re the antibiotics; I too now have a rescue pack. If I think I need to take them have to phone my GP on the following day. Best wishes to you and your husband. Bernie.

  • Hi clock65 and welcome to the site. You'll definately enjoy it here. Lot's of good advice, support and some very funny jokes too. lol. x

  • Hi to you casper, and thanks. As I've said elsewhere I am really glad that I found this site. And I enjoy the humour! Bernie.

  • Hi Bernie and welcome. Have to say the site has become much more relaxed and good for a laugh lately - yes, O.K, there are lots with problems that put my small complaints in the shade and there's always help or a sympathetic ear on HL. Maybe a laugh or a really lovely pic. can also give us an enormous lift - I know I'm grateful for them.

  • Hello Dragonmum, and my thanks to you also. With regards to those members who seem to be much more unwell than I am, a fair few of their posts have been inspirational to me. Sort of "Come on Bernie, if they can face their troubles the way they are managing to, and with humour too, then you certainly can." By the way, I talk to myself quite a lot! Cheers now, Bernie.

  • Hi Bernie...apart from the mucodyne you're on the same medication as me. I wonder if you've noticed any difference, one way or the other, since starting theophilline? It seems forever that I've been on these tablets and it's hard to remember the before and after.

    I'm sure most of us could relate to that chest infection and it's effects - really knocks the stuffing out of you so take good care of yourself.

    Good to know you've made your way to our's a friendly and supportive place to be

    and you'll soon get to know us. Regards ~ Lovelight

  • Hello Lovelight. Before my last stay in hospital my medicines were Spiriva (about 8 years), Seretide (18 months or so; was changed to this from Serevent inhaler + a brown inhaler, name escapes me) and of course Ventolin. I'm still using Spiriva, and have Ventolin also. To answer your question is a little difficult, because consultant changed me to Symbicort from Seretide, and added the theoph. tablets, 200mg, one twice a day. So.... I definitely feel quite a bit better, but is it because of one or the other, or both? Not a lot of help to you I'm afraid.

    Many thanks to you for your kind words. Take care, Bernie.

  • clock65, Hi and welcome to our site. I am amle too, and also 65 for 9 months now. In the past, I have been really bad. I was really bad when a chest infection settled in, adn I had several of those, unfortunately,

    Things you can do. I followed others' piece of advice nd pass this on: Take Vit C + zinc to reinforce your imune system. Take Vit D because the sun is shining less hours in teh day and we need those vit D to protect our bones and oru body. Take acidophilus to have a good population of friendly bacteria; they attack the nasty ones, especially where there's a good crowd of them.

    Do exercises for your lungs - I go to the gym 3 tiems a week. I've also enrolled in "from couch to 5K2 a running programme from the NHS (search this site for it, there's a community dedicated to it).

    Have you had your flu jab? Do it before the winter sets in and especially before you have a crowd of friends who tell you "Oh my cold is nearly finished, sniff, sniff, huh, huh!"

    prevent any germs getting in you by having a nasal spray and an antibacterial hand gel.

    Well that's a lot perhaps, but I went to my consultant who told me I was transformed (Last year, once again I had been in hospital with a nasty Pseudomonas). Since you are well, you are really privileged! Keep it up and away from infections.

  • Good morning Helingmic, and many thanks to you for your welcome and advice. I am due to visit my local lung function clinic in 2 weeks time, so will take a list of the vitamins etc that you mention and ask the resp nurse. About exercise..... My name is now on list for pulmonary rehab. Lovely sunny morning here. Makes such a difference. I hope the sun is shining where you are. Cheers, Bernie.

  • Bernie, I live along the Thames estuary in Kent and indeed we have gorgeous weather until tomorrow, when it will rain. I must admit, I welcome such weather for my lungs. It has kept me well, as much as taking Vit C with zinc (to support the immune system) and Vit D in cod liver oil ( to support joints and bones, especially when the sun will be going short on its showing time!)

    when I mention vitamins to my doctor, she cannot pronounce herself as she says that there isn't enough research one way or another, so officially the NHS cannot recommend them either way! Unofficially, they say take them if it helps you. The NHS website says that we take enough of them in the food. yet, my GP told me last spring that I was short on Vit D, hence I took the supplement. I'm no longer short on them, but they won't comment on the supllement directly. ONly my chest consultant told me that I looked transformed! Something must be right but he won't say what!!!

    Bravo for being on the Pulmonary Rehabilitation. This will help y ou a lot. Also you can build a relationship (medical, that is) with you pulmonary nurse. She is, usually more down to earth than the consultant, and knows the nitty gritty of lung problems, and can show you a few tips too.

  • Advice much appreciated, Helingmic. Glad to hear that you had the sunshine today. Good for us, and raises the spirits! Cheers, Bernie..

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