This is my first post. I was diagnosed with mild bronchiectasis earlier this year after years of being told I had asthma (which I'd never believed). I've also got 'small airways disease' and large lungs, neither of which have been explained to me. The only medication I have been given is Qvar, but it doesn't seem to have improved my breathlessness. I've never been given any information leaflets by the hospital. I never see the same GP at my surgery, the only appointments entail a three week wait, and I have only ever seen (different) registrars at the hospital. My GP surgery won't let me have an emergency pack, despite the hospital asking them to, and for my first exacerbation last month I was only given 7 days of antibiotics, again not what the hospital had requested. So I'm feeling rather confused and fed up! I was just about coming to terms with the diagnosis, but the exacerbation made me realise just how awful it can be. It took over 5 weeks to get back to normal, and certainly taught me to listen to my body and get to the GP more quickly next time. Unfortunately my job and boss don't make taking time off sick easy, and my DH prefers not to know what's going on, so I'm having to deal with this on my own. I realise I'm lucky to have it only mildly. I keep reading posts here where people refer to 'their' consultant or 'their' gp, but I've had no continuity of care and have never as actually met the GP I am registered with. Does anyone here have any tips for me? I should add that I've seen a lovely physio, so now know about 'huffing'. Thanks for reading!
Bronchiectasis diagnosis: This is my... - British Lung Foun...
British Lung Foundation
You do seem to have been badly treated and to be slipping through the cracks. I am sorry. You should be seeing a consultant with specialist expertise on Bronchiectasis. And you need a firmer diagnosis on the small airways disease. (By the way small airways diseases are not small diseases.)
DH? Dear Husband? Doollally Hippie? Dark Horse?
I think you need to be brave, "grid up your lions", and beard a GP. Go with a very clear idea of the outcome you need. As you have never been seen consistently by one GP probably does not matter which one you see, any of them should be able to refer you. Look up the info about bronchiectasis on the BLF site,
All the best, looking forward to reading the next episode.
P.S. If you have had a pulmonary function test, and have the print out, post the details here. I would be interested, I have a small airways disease. And I can compare the numbers.
You should have your own respiratory consultant and see them regularly and yes definitely a rescue pack. There are devices you can do your breathing exercises with to make it easier I think it may be called an Acapella device? People on here know more than I do though.
You need to see someone who specialises in this condition and not just run of th mill consultant but it sounds like your going to have to really push hard for these things and be strong, it's not fair shouldn't be like this. The bigger hospitals tend to have the best ones. I'm sorry your husband isn't being supportive it's toihg on your own I know. I really hope you get put in th right direction soon.
Like I said make a GP appt first and explain what you need, they need to take it seriously.
The guidelines for bronchiectasis state 14 days of the antibiotic and that a rescue pack should be kept by the patient. You can find them on the internet. A new set of guidelines has recently been published and my consultant is co chairman of the committee which wrote them.
If your surgery continue to refuse to cooperate with the hospital requests,, refer the practice manager to the guidelines and begin the complaints process. That tends to concentrate their minds. Taking seven days of abs with bronchiectasis is about as good as eating a packet of smarties.
It is vitally important that bronchs have continuity of care and that this is under a bronchiectasis specialist. NOT a general respiratory consultant because they know very little about it and GPs even less. They are just not trained because the emphasis is on copd.
All bronchs are different therefore their treatment is complex and variable. The bronch specialist tells the GP what to do. My GPs are grateful for that support in looking after me and are very cooperative with my specialist. At least you are getting help in self management from a good physio.
I’m afraid that our health is in our own hands and we have to be vociferous in getting the best for ourselves. Look on the internet for a bronch specialist near to you. They are usually at big teaching hospitals. Take the name to the GP and do not leave until you get a referral. Do not take no for an answer. There is too much complacency amongst the medical profession towards the treatment of bronchiectasis patients and every delay leads to more of a cycle of infection and lung damage. Good luck.
Hi, like you I have been diagnosed with bronchiectasis in bottom left lung. Also COPD in bottom right lung and Fibrosis top of both. Rock and a hard place springs to mind. Oh and not forgetting "Asthma", which I all ways thought was a cop out by GP at the time as I had a constant cough after a very bad dose of Flu.
Like you I have had nothing from GPs regarding any referrals and even had them saying "they're helping you to breathe", when I have questions about some of the side effects of the inhalers. Such as very dry mouth, gum disease and oral thrush. All brushed aside as if I'm talking out of my bum.
The best laugh was this week GP sent me a leaflet on bronchiectasis to read, I think she needs to read it herself and refer me to someone who knows what they are talking about.
Good luck in your quest and try not to be fobbed off.
Hello 24cc . 😊
I think everyone has given you some really good practical advice re: treatment and consultants. I can't really comment on care as I live in Japan and it's so different here.
DH I am going to assume is your husband? I am very sorry he "prefers not to know" . It is so hard when you feel alone with not much support. As for your job, can I ask what kind of work you do? Do they know the extent of your illness?
Sending hugs and warm wishes,
Cas xx 🍁🎃🍁
Hi there, reading your post sounds so much like me. I was treated exactly the same. Littlepoms advice is what you need to follow as its the only way you will be treated correctly. I asked to be referred to a specialist but have been sent to a respiratory consultant which is not the same. My condition is getting worse so have an appointment to see if I can get my doctor to change thjs. Wish you all the best. Irene x
I live in the US and do have excellent care although expensive. I have “mild” Bronchieactesis as well. Also asthma. My Pulmonary Dr has me on 2 nebulizer treatments (albuterol and saline) after which I use a flutter device andhuff breathe. I also have 2 inhalers Spiriva 2 puffs daily and Advair500/50 1 puff 2x a day. I was on oxygen for 4 months. All this for “mild”. I do have it in both lungs. Right now I am doing great. I am thankful my Drs were very aggressive. My prayer for you is you find someone who knows what they are doing and fast. Please keep us posted. I told you my story so you could see how a “real specialist” treats mild bronch. Also, my last exacerbation I was on antibiotics for a month. God bless.
Hi! You may also ask your doctor a clear instruction what to do when you are about to flare up or exacerbate so that you can prevent it. For my father who also has bronchiecstasis along eith stage 3 lung cancer and emphysema, whenever we are suspecting that exacerbation is about to come or his cough is more productive than usual or there is a change in color of the plegm and longer/more episodes of shortness of breath, we were instructed by his specialist to nebulize 3x with 15 mins interval and a dose of prednisone (steroids), in a worse case - we were instructed to prepare the patient to be brought to the hospital after the 1st nebulization. Also, the specialist must be informed every incident so that she/he will know if antibiotic is needed and otjet meds and procedure. Stay strong!!! Praying for your condition.
Hi 24cc, I too have been diagnosed with bronchiectasis recently and I am having the same problems you are. The GP and the Hospital Consultant don't seem to work together and I have had trouble getting the correct medication which the Hospital Consultant prescribes. My consultant gave me his secretaries telephone number and I recently asked her for a letter that he had written to the GP, neither have any problem giving me copies of letters. I found it very useful with my last prescription as the GP under prescribed and it was most urgent I had the correct dose. I am quite a placid person and I don't argue but have had to recently. Generally, I am persistent now I just keep going back to the doctors. I've been told that I am resistant to Amoxycillin as that is in my rescue pack and I am wondering what I am going to do when I have an exacerbation. Once I was diagnosed they sent me to Pulmonary Therapy which was very helpful but I think its one of those things that not all areas run. I have mild bronchiectasis like yourself, COPD and Severe Asthma. I have had pneumonia twice and after the last bout I was diagnosed. Littlepom has a really helpful writeup about it on her page which I think may help and of course the twogreys also have links to the bronchiectasisisnewstoday.com which has a wealth of information. I thought that once I was diagnosed I would get two weeks of antibiotic as we should but aparently it doesn't work like that in my GP Surgery you have to wait until you have taken the first lot and then go back to the doctor if still unwell. It is like banging your head on a brick wall sometimes but as Littlepom says be persistent after all it is our health and we are the only ones who can stick up for ourselves to put things right. Good luck and I hope you learn more from the other members in this group, after all, we are all in the same boat.
Hi 24cc. The bronchiectasis guidelines state two weeks of abs for a bronch exacerbation and two week rescue pack to be kept at home. You may like to point the practice manager in their direction and tell them that they are breaking the guidelines. A mention of beginning the complaints process also concentrates their minds.
They are treating you as copd which is typical of the ignorance of many GPs, especially when they cannot be bothered to read and act upon the consultant’s letter. If they are going to ignore the consultant’s instructions what was the point of referring you?
As far as amoxycillin is concerned, it is mostly useless in bronch. I would give your cons secretary a ring. Tell them that the amoxycillin is not working and of the problems that you are having. Hopefully the consultant will write to the GP to change the antibiotic and stressing the correct dose and 14 day course. Make sure that you have a copy of the letter sent to you. Take all letters in person to your GP and sit in front of them whilst they read it.
In the meantime, take a sample of sputum for the GP to have tested to find out which bug is in there. The lab also suggest antibiotics to be given. I’m afraid that we have to be very vociferous in getting the treatment we need and use every angle to make them realise that we are not going away.
Good luck. I hope that helped.
Hi there. Thanks so much for all your comments. It's really helpful to know that I'm not alone. Yes, I'll be more assertive with the gp when I have my next exacerbation. I have another hospital appointment and will double check with whoever I see to make sure that I'm under a bronch specialist. There is one at my hospital but I've only ever actually had consultations with registrars; I guess I'm not yet interesting enough for the main man, which must be a good thing. I shall be going armed with a long list of questions. Thanks again for all your comments.
I hope that you get to see a consultant who specializes in this field - it can really pay dividends. From experience, I feel that respiratory staff sometimes treat everyone with a lung problem as COPD. Certainly my OH has moderate COPD but that is not his real problem. His asthma/bronchiectasis/immune deficiency are responsible for his poor health.
Despite his history of almost back to back infections, nobody (not even the consultant) thought to do tests for immune deficiency, immunize and discuss clearance. All this has been done since seeing the specialist. I very much appreciate the support of our local respiratory unit but looking back I can see that they have a tendency to stick the COPD label on patients and treat them all the same.
Hi there...you need s referral to a pulmonary dr ASAP...you are slipping through the system...I presume that you had a cat scan done to diagnose Bronchiectasis...you need a 10 supply of amoxicillin for emergencies..you should also get s sputum test done, to test for bacteria...GP’s have minimal understanding of respirator...try another inhaler like symbicort...you should always have ventilate inhaler as well....For your own info, try Mayo clinic connect, and hook up with their support group..tons of info...download and show your dr info...get another GP if he refuses your requests...starts with empowering yourself with info...this support group is good as well...good luck..
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