Will I ever feel well?

I have mild copd and what consultant has described as minor bronchiectasis. This diagnosis has come after 8 months of being unwell with repeated sinusitis and chest infections. Can anyone tell me whether I'll just have to get used to feeling like this? What can I expect my health to be like? It would be good to know what to expect rather than to keep thinking I might feel a bit more normal when I wake up tomorrow.

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  • Hi. This is the first time I have written anything on this site. I have always been active playing table tennis all around the world. I walked up Ben Nevis 3 years ago, I have never smoked

    8 months ago I was diagnosed with MILD Bronchiectasis. Every 2 weeks I'm on antibiotics and steroids. Pk flow was 90 and after nebulising its only 140. Like you I feel so unwell and I have no will to do anything. My consultant said he's done all the tests he can do, it's only mild so mild I wouldn't even call it bronchiectasis, so has left me floundering. I was so upset, that I have now got an appointment at the Brompton on Wednesday. Trying to keep my hopes up until then. I don't think I can carry on like this. I'm single 56 year old lady, so worried about work, I've even had to reduce my working week down to 3days , house is looking untidy which is making me more upset.

    So sorry for the rant, but feel sooo unwell.

  • Oh dear I do feel for both you and Hopefullygettingthere (who might change her/his name to iWILLgetthere).

    Many many of us have begun in the same way and it's really really hard. Particularly when you're thinking your life is over as you knew it. Almost depressing really.

    You both need to go to Pulmonary Rehab, PR. You must insist on a place, some are told "you're not ill enough" which is bull.

    The modern thinking is that people need to attend in the early days in order to learn the ways to preserve their lung health for the best quality of life. Learning particular exercises for strength, stamina. Breathing techniques, medications, correct techniques for inhalers.

    It taken me near 5 years to get the right treatment and this winter was my best, such a relief I can tell you. That's after finding this site a year or so ago, CT scan, PR and keeping my immune system as tip top as possible.

    Be patient, learn lots (knowledge is power). Daffodil, it's great you're going to the RB - oh how I wish I'd been referred there, is only 30 minutes away.

    Good luck to you both. P

  • Hi Peeg. Thanks for responding. I have started taking vitamins and manuka honey,. In what ways do you keep your immune system tiptop?

  • Vits: B12, 1000 + zinc of effervescent C 3xdaily when unwell down to 500 when reasonable, Super strength (25mcg) of D3 Oct-May then normal dose for rest of year.

    I take a good multivitamin & mineral daily too.

    Also probiotic acidophilus when on antiBs and for 30 days afterwards.

    Manuka 20+ when dodgy.

    If I think I'm coming down with something I blast myself with the Vit C with Echinacea drops thrown in.

    Loads of green veg

    I don't take any notice of people saying you get what you need from a balanced diet - that only applies to well people as far as I'm concerned (based on professional advice).

    I don't eat fruit except berries.

    The above plus deep diaphragm breathing I'm sure has helped me keep infections at bay (bar 2 ) and my energy levels higher. My best winter for years.

    The latest addition to my regime is 1st Defence as recommended by Twiceshy which I use on public transport and being with children.

    There's no doubt that continuous infections (cigs & excessive alcohol) lower the immune system.

    As I've said before, I'm deeply sorry for those folks with either no or compromised immune systems. It's very tough for them. P xxx

    Edit: a lot of GPs dole out useless antiBs. A sputum test needs to be done to determine the correct one although I absolutely never, ever, accept Amoxicillin. In 5 years it didn't help once even when given high dose for 3 weeks on the trot. Grrr

  • Hi hopefullygettingthere. Oh dear what a pair we are! I, like you, was very active. I'm 51, so a little younger but I have been a smoker. Apparently this is not connected to bronchiectasis. I have been off sick for 7 weeks now and am due back tomorrow. From what others have told me on this site which is a godsend for people like us who have little knowledge of this condition, the pulmonary rehab is crucial as are breathing techniques and chest clearing techniques. I have copd as well so 2 nasties going on! I've tried really hard to be positive and have forced myself to do things and not give up this helps it's almost mind over matter but then at night I fall into bed exhausted, every bone in my body aching. I'm not sure how much more of that I'll be able to do. My peak flows are always between 290 and 350 so I'm nowhere near as poorly as you. Your peak flows are a good indicator of being unwell. My consultant has given me rescue antibiotics and steroids which he said should be started if pk stays under 300 for more than 2 days. Do you know what your normal pk should be?

  • Hi hopefullygettingthere, I am so sorry you feel so down, please don't sit at home feeling helpless. Contact you Consultant's secretary and ask for an urgent appointment, if this does not work, go privately. I had to do this at the very beginning of my illness and although I strongly disagree with having to go private, if I hadn't, I would have been much worse off. After every test and they all came up with worrying results, but did not give the Consultant a clear picture, I told him I could not go on this way as I felt I was slowly wasting away and I was having nightmares about having Cancer or COPD. He told me we would start all over again with the tests as something was missing. I restarted the tests and the second newer CT scan showed up the problem. Once diagnosed I was put on the Azithromycin 3 times a week and I have grown stronger ever since. This might not be the road for you but sitting at home worrying is not getting you anywhere. If you do not have the confidence to go direct to your Consultant, go back to your GP and he/she will advise you how to go forward. I hope you feel better soon. Good luck Maximonkey

  • Good for you MM. If I had my time over I'd get a private CT scan.

  • Hi peeg, are you still going to your Consultant? If you are ask if you need a CT scan. I only had two because I was constantly ill with no diagnosis in sight. Good luck and take care Maximonkey

  • Hi thanks MM, I did finally get one. after I'd refused to see that con again I had a lovely registrar and I didn't even have to ask, she organised it straight away. I saw it and was greatly relieved to see only minimal damage to each lung and no disease. Phew. Xx

  • Hi peeg, that's good news anyway. Take good care of yourself. MM

  • Hi Maximonkey

    I'm afraid I have no conference with my consultant at all, he discharged me in August when my pk flow was 100 and still so breathless. He said he'd done all the teats and this will not affect my life.

    I have had asthma since I was a young girl of 13 & sometimes put on steroids and a nebuliser and in a couple of days I'd be back to my usual self. Unfortunately I've been so poorly for ages now, today my pk flow hasn't been over 150. I have got an appointment with a specialist for Bronchiectasis at the Brompton on Wednesday, so am hoping I get to that appointment.

  • Hi hopefullygettingthere, Good luck at the Brompton. Make sure you tell the specialist there how bad you are feeling. Take written notes of how you feel each day and what medication you take plus how many times you need your inhalers, also details of your peak flow. It may sound overboard to take all this information but I always have and the Consultant has always been glad of this. In fact my notes always go into the file. My immunologist did not have any notes from my Consultant and was very pleased I had written notes as these started my file and saved me trying to remember when everything happened and how I coped with it. I must admit at this time in my illness I was not thinking straight, I was very weak and my mind was less than clear, so it also helped me not to have to remember anything. Oh I nearly forgot, take your prescription list too as they need this for the file. I feel it helped them to help me. So get typing with the info. Take care and good luck Maximonkey.

  • Ah that's really good your going to the RB , best place. I will demand there next time I need a referral. Been discharged from the nasty con.

  • Sorry to hear how unwell you are and really I can contribute very little. However as I have stated on another post I am a little concerned as to whether consultants are concerned about diagnosing. Are they worried that their opinion may end up being discussed in court (quite rightfully). My consultant appears to not even want to consider asbestos damage to my lungs even though the local coroners court has deemed a recent death as being due to exposure to asbestos in the same factory I worked at for 30 years. Fortunately for me I am nowhere near as bad as you two, but that is now.

  • Hi Daffodil51

    I so sympathize. I am in the same situation as you and have been on a roller coaster ride for a few years now trying different drugs and exercise etc. I now have light at the end of the tunnel and fingers crossed mine could be due to gastric reflux and a hiatus hernia which can be operated on. Please don't give up. Take a strong person with you when you see a consultant to push your case especially if you aren't well on your appointment date. You will get there in the end especailly as your copd is described as mild. Good luck and try to think positive.

  • Hi Gardener2

    After a dreadful day, of low pk flow, breathlessness headaches, nosebleeds (thats a first), you've given me something to clutch onto.

    I have been told I have hiatus hernia and gastric reflux. I'll ask the professor on Wednesday if this could be operated on to help me breath I'd do it in a breath. lol

  • Hi hopefullygettingthere

    So glad I could be a little bit of help. I have been on lanzoprosol for years and it did help when I first started taking it and then all the syptoms came back. I have been so ill for about 18 months with a chest infection every month with double dose of different antibiotics which made me feel even worse and 8 steroids a day for 7 days phasing down by one a day for a week. Bruised and battered I came out the other side to start all over again. At the last appointment with my consultant my daughter-in-law, a social worker with the elderley in this area decided to come with, accompanied by my daughter. I was so ill at the time they took over and laid the law down that I had no life and something needed to be done. He then suggested a endoscopy which I had last week and they have advised that the hernia is large and an operation would definitely help, so watch this space. I'm afraid I'm not a fighter when it comes to Drs and Consultants and I really feel I wouldn't be where I am if wasn't for those strong girls. All I'm trying say really is fight your case. Good luck.

  • Hi Daffodil and welcome to the site.

    Your diagnosis sounds exactly like mine and so do all your symptoms.

    I was diagnosed 13 months ago. I imediately gave up smoking and decided to go all out to beat this thing. I INSISTED that they send me on a Pulmonary Rehab course, which was great, I learned such a lot about keeping as well as we can.It is amazing the way doctors and consultants give you the dignosis and then leave you swinging. I found that looking things up on the computer frightened me to death. I then found this site and now if I have a problem I either ring the Pulmonary team or ask a question here.Since I have found out how to use the inhaler properly and do my excersises or go for long walks my health has improved I have only had 1 bad infection and 2 small ones(which I caught early with my rescue antibiotics) this year so the answer to your question is YES you can feel well again.

    Hope this helps PTxx ps. If you are not happy with your inhaler and it is not helping go back to your doctor and get one that does.

  • Thanks for response ptliverpool . I will push for pulmonary rehab. You're right about being left swinging. I have the same attitude to it as you. I have rescue meds so will catch anything early xx

  • Hi yes you will feel better again . I have been off work since Dec 9 last year im going back on Wed phased return. I have had the worst five months of my life and have been housebound due to the weakness and unable to breathe properly. I now feel better but its going to be a while to get built up fitness wise. I also have autoimmune disease so drugs make me suseptable to pick up infections. First defence spray before going in public Antibacterial wipes everytime out ...shopping trollys money door handles etc Do not touch your face without using wipe or gel etc. Ask people with cold etc to stay away .....scarf over mouth and nose in colder weather. Vitamins and good balanced diet . Emergency meds to take asap peak flow drops below 250 or feel infec brewing (which you will get to recognise) do some exercise everyday to get your heart beat up . I have never smoked was misdiagnosed with asthma for twenty years when its probably (consultant wouldnt confirm this hmm wonder why?? Negligence!!) Chronic bronchitis luckily probs due to never smoked my breathing is only bad when i have infections . Take each day as it comes but make yourself dosomething everyday and build on that. Two weeks ago i hadnt ridden my horse since last Nov now im riding every other day only for ten mins but im doing it xxxxx judith

  • Thanks for response. I haven't got a horse but I'm starting swimming again which I really enjoy. Xx

  • Well swimmings good if i had more time id swim again but twohorses work and i do personal fitness no time haha xxx

  • Hi Daffoldil51, I too have been just like you for about 2 years. I was in and out of hospital with one pneumonia after another before they diagnosed Bronchiectasis. Once I was diagnosed with mild Bronchiectasis I was put on Azithromycin 3 times a week. I have been ill only once since, and that was with influenza which of course Azithromycin could not keep at bay. I gradually grew stronger and stronger and my asthma and breathing are kept under control with my inhalers. I still get a little bunged up occasionally (sinuses) especially after I fly, but it soon passes. My immunologist gave me an injection at the beginning of the Azithromycin treatment to boost my immunity and my tests since for immunity have been fine. I hope you are receiving the correct medicines for you and if you have asthma, you should also have an asthma nurse. If you are unhappy with your treatment so far please do not hesitate to contact your Consultants secretary, I had to do this twice and she was very nice and I spoke and later saw the Consultant quiet quickly. Good luck there is hope. Maximonkey

  • Thanks for response Maximonkey. Can I ask who referred you to immunologist?

  • I was diagnosed with mild copd but apparently I s also suffering for depression and anxiety, which to be honest, I didn't realise! The consultant gave me medicine for the depression and I did feel better with my breathing but certainly not brilliant. The consultant then dismissed me and told me to exercise, congratulated me on giving up smoking and told me not top even think about the copd anymore!!!? I ask to go t or And argued that I would like to understand the disease better and enable myself to cope with what's ahead and what I I can do to delay the progression. I was told I wasn't bad enough. What else can you do when the d doctors dismiss you. I still dont feel great but I am determined to enjoy myself but maybe just a little slower!!

  • Hi Daffodil51, My Consultant referred me to the Immunologist as I was in need of help with my allergies/asthma and my immune levels needed to be checked. I thought it might to a waste of time but no it was worth it and the Immunologist still sees me every January for blood tests. Good luck and ask your Consultant if you need this kind of help. Nothing ventured nothing gained as they say. Maximonkey

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