I am new to all this but have posted one silly question before (with hindsight). I have read and learned a lot from all of you, but what has struck me the most is the genuine kindness and caring that shines through. I have looked up copd and bronchiectasis but it confuses me more! I have had asthma for around 10 or 12 years, have never smoked and am on ventolin and seretide. I became very ill a year ago with a very violent cough, exhaustion to the extent I could not even wash, lots of sputum and extremely breathless on exertion. Because of my geographical location it is difficult to get medical help quickly sometimes. Anyway I have had a spirometry test done and have been started on Spiriva handihaler which I have responded very well to. The difference in my coughing now is like night and day, although I am still exhausted, breathless and coughing up loads of sputum. I should also mention that for the past year my appetite has almost completely gone and am getting buy on 2 slices of toast and cheese a day. Its not that I don't want to eat, I just can't. My GP did mention that I may have bronchiectasis as well and I have to see her on Monday. My lungs are also hyperinflated and I wondered if anyone knows whether they will go back to normal. I also have epilepsy which casues severe memory problems. I think I have taken something in and then 20 minutes later I can't remember everything. Sorry for going on for so long but I thought if anyone is good enough to answer it is better that all the facts are out there. I wish everyone who is reading this all the best and hope you all keep well. Thanks
Hi everyone, I am new to this and was... - British Lung Foun...
Well, as I know from close information my Specialists and Dr's the 2 are under one umbrella in so much as chest problems but they are not the same, not to be confused with COPD, Bronch as they call it is filters being worn away like brushes allowing for mucus to enter the sacs and then its stores in the sacs and needs to be dispelled by coughing or Physio, it depends also on the degree of it and if its localised as I understand. Many people with this have it from different route causes, ie whooping cough as a child and in other cases no cause is ever known...You need to arm yourself with more information from the BLF helpline Nurses as data and treatments change as do Meds. The more that you understand the better you will feel as with all conditions.I think Chest problems can cause weight loss its important to try to keep fit and keep the appetite up for your strength also for the epilepsy Meds.. Memory loss as you know is part of Epilepsy and not unusual. I am thinking you are newly diagnosed with that as if its been for life it does have a learning impact through school as well as is often the case.. Again getting control from the meds is the key with that and of course they do bring side effects, but hopefully being seizure free is the end goal. Don't panic get as much information as you can and try to stay fit and well to keep your immune system boosted.
Hi huggs(what a lovely name) Do feel for you,it's enough having one illness,without all the extras!
Positive thoughts,has answered your post beautifully,& I realy can't add to it,except to suggest you try some of the nourishing shakes you can take,toast & cheese is realy not enough for you,& you can get drinks,with all the vitamins etc.
Do pop in & let us know how you get on,remember no question is silly,if its something you need to know,we are all here to help each other,love Wendells xxx
Hi huggs, can you ring the BLF helpline , they are open from 10am during the working week, they can give you information and they have also printed booklets which you can refer back to if you have memory difficulties.
Can you ask your gp if you can be referred to a respiratory consultant, especially as you have epilepsy as well. They can review your medication as the inhalers that can help some people may not be suitable for others...we are all different.
I used to have a continuous cough with lots of mucus, hyper inflated lungs and so breathless at times that even walking to the bathroom would make me panic. I have a different steroid inhaler now, and breathing exercises have helped as well so feel much better. Good luck
Hi you have not posted a silly question. I have often wondered the same thing, someone will no doubt put us both straight before long.
I had the problem with not being able to eat when I was in hospital, they gave me high energy milk shake type drinks, they really made a difference, after a couple of days I felt so much better. They give you chance to get some strength to fight the infections. Perhaps your doctor can recommend something similar.
My daughter who is a nurse made me make up a medication chart rather like the hospital use because my memory is not so good. It has the list of meds down one side and the time I should take it, I just have to tick a box to say I have taken it.
Good luck, make sure you tell your doctor all your problems, make a list and then you wont forget any of them.
Hi, that is a great question! I have asthma and bronchiectasis as well as several other conditions. Mine seemingly was caused by a severe case of childhood measles. I am on prophylactic antibiotics but am still having exacerbations lasting 3 - 4 weeks at a time. I generally have Haemophilus Influenza, Streptococcus Pneumonia, Staphylococcus Aeurus and Serratia Marascens growing in my lungs. The coughing is exhausting and I don't think anyone realises just how bad it is. However bad you feel, you need to eat as you need your strength for fighting the infections. Try to eat something light that doesn't involve a lot of chewing as I find I am too exhausted for that. Perhaps some scrambled egg, porridge or soup. All highly nutritious and easy to eat. I find eating toast difficult as it is dry and the crumbs/dust make me cough and choke! I have detailed below some information I have gathered but there is an awful lot more to learn. Good luck and best wishes, L A
Damaged lung cannot be repaired and so the basis of management is to prevent or at least slow down further deterioration. Management includes treatment of any underlying cause and any coexisting medical problems. Patients who should have regular follow-up in secondary care include:
All children with bronchiectasis
Patients with chronic P. aeruginosa, opportunist mycobacteria or meticillin-resistant S. aureus (MRSA) colonisation.
Deteriorating bronchiectasis with declining lung function.
Recurrent exacerbations (3 or more per year).
Patients receiving prophylactic antibiotic therapy (oral or nebulised).
Patients with bronchiectasis and associated rheumatoid arthritis, immune deficiency inflammatory bowel disease and primary ciliary dyskinesia.
Patients with bronchopulmonary aspergillosis.
Patients with advanced disease and those considering transplantation.
General management issues:
Maintain a healthy diet and physical exercise; ensure adequate energy intake to provide for increased energy demands. If the patient smokes this must be stopped and smoking cessation advice and help should be offered. Passive smoking should also be avoided. Immunisation against influenza and pneumococcus.
Physiotherapy: airway clearance techniques and exercise
Patients should be made aware of the airway clearance techniques available and, where possible, be encouraged to be independent with the chosen airway clearance technique. Modified gravity-assisted positions (no head-down tilt) should be offered where the conventional tipped position is contra-indicated or unacceptable to the patient. During an acute exacerbation or when the patient is more fatigued than usual, manual techniques may be offered as a part of an airway clearance technique regimen.
Sterile water inhalation may be used before airway clearance to facilitate clearance. The use of nebulised normal or hypertonic saline prior to airway clearance could be considered to increase sputum yield, reduce sputum viscosity and improve ease of expectoration. Inhaled beta-2 agonists should be used prior to treatment to enhance sputum clearance. Non invasive ventilation or intermittent positive pressure breathing may be used to augment tidal volume and reduce the work of breathing in those patients who are becoming fatigued and finding their standard airway clearance difficult. Pulmonary rehabilitation should be offered to individuals who have breathlessness affecting their activities of daily living.
Before starting antibiotics, a sputum sample should be sent off for culture. Empirical antibiotics should be started while awaiting sputum microbiology.
If there is no previous bacteriology, first-line treatment is amoxicillin 500 mg three times a day or clarithromycin 500 mg twice daily (in patients who are penicillin-allergic) for 14 days. High-dose oral regimens (eg amoxicillin 1 g three times a day or amoxicillin 3 g twice daily) may be needed in patients with severe bronchiectasis chronically colonised with H. influenzae. Ciprofloxacin should be used in patients colonised with P. aeruginosa. Sputum results, including previous sputum bacteriology results, are useful in deciding which antibiotic to use for acute exacerbations (all treatments are for 14 days):
Streptococcus pneumoniae: amoxicillin (second-line: clarithromycin)
Haemophilus influenzae (beta-lactamase negative): amoxicillin (second-line: clarithromycin or ciprofloxacin or ceftriaxone).
Haemophilus influenzae (b-lactamase positive): co-amoxiclav (second-line: clarithromycin or ciprofloxacin or ceftriaxone).
Moraxella catarrhalis: co-amoxiclav (second-line: ciprofloxacin).
Staphylococcus aureus: flucloxacillin (second-line: clarithromycin).
Meticillin-resistant S. aureus (MRSA): oral rifampicin plusdoxycycline/trimethoprim; intravenous vancomycin or teicoplanin.
Coliforms (eg Klebsiella spp., enterobacteria): oral ciprofloxacin (second line: ceftriaxone).
P.seodomonas aeruginosa: oral ciprofloxacin (second-line: intravenous ceftazidime or tazocin or aztreonam or meropenem).
Antibiotics can be modified once the pathogen is isolated only if there is no clinical improvement and the treatment should then be guided by antibiotic sensitivity results.
Failure to respond to an antibiotic course should prompt a repeat sputum culture.
Intravenous antibiotics should be considered when patients are particularly unwell, have resistant organisms or have failed to respond to oral therapy (this is most likely to apply to patients with P. aeruginosa).
Long-term oral antibiotics:
Patients having 3 or more exacerbations per year requiring antibiotic therapy or patients with fewer exacerbations that are causing significant morbidity should be considered for long-term antibiotics.
S. pneumoniae: amoxicillin (second-line: clarithromycin).
H. influenzae (beta-lactamase negative): amoxicillin (second-line: clarithromycin).
H. influenzae (beta-lactamase positive): co-amoxiclav (second-line: clarithromycin).
M. catarrhalis: co-amoxiclav (second-line: clarithromycin).
MRSA: flucloxacillin (second-line: clarithromycin).
Children and adults chronically colonised with P. aeruginosa: nebulised gentamicin, tobramycin, or colistin.
In the first instance, high doses should not be used to minimise side-effects.
The antibiotic regimen should be determined by sputum microbiology when clinically stable. Long-term quinolones are currently not recommended. Macrolides may have disease-modifying activity but this has so far not been proven large randomised controlled trial.
Long-term antibiotics may result in antibiotic resistance in individual patients and alternative antibiotics should be chosen depending on sensitivity results.
Some patients may respond to antibiotic treatment despite resistance to that drug in vitro. Antibiotics should only be changed if there is no clinical response.
Other drug treatment:
Mucolytics and hyperosmolar agents: recombinant human DNase should not be used in adults or children with bronchiectasis.
Bronchodilators: it is appropriate to assess patients with airflow obstruction for reversibility to beta-2 agonist and anticholinergic bronchodilators and to start treatment if lung function or symptoms improve on therapy. Methylxanthines have no routine role in bronchiectasis.
Inhaled corticosteroids: inhaled steroids should not be used routinely in children with bronchiectasis and current evidence does not support routine use of inhaled corticosteroids in adults with bronchiectasis (unless the child or adult also has asthma).
There is no evidence for a role for leukotriene receptor antagonists or other anti-inflammatory drugs in bronchiectasis.
The use of oxygen therapy may need to be considered. Noninvasive ventilation can improve quality of life in some patients with chronic respiratory failure due to bronchiectasis.
Hi peeg, thank you. I've looked at a lot of different websites and have found some good some bad some down right scaremongering. I have gathered the information from various resources and chosen the relevant bits and made up my own fact sheet. I'm still researching and I firmly believe I will be for sometime yet. All the best and keep well.
Huggs, no questions are silly, ask away - great post, look what a fab reply you got from LesleyAnne for us all to read!
Education is the key to understanding what's going on. Have you been diagnosed with bronchiectasis?
My GPs were convinced I had it, that or Aspergillosis but the CT scan proved that wrong, I'm pleased to say
Like you my asthma was diagnosed 10 years ago although I believe I had it since early childhood it sort of disappeared about age 7.
I'm also about your age. 5 years ago my lung health went right downhill and it's taken years to get sorted. I had pneumonia 5 times in 18 months, if only I knew then what I know now grrrrr, perhaps I'd be a lot better off now.
Right now I'm pleased as punch because I've only (only?) had two exacerbations this year. I firmly believe it's because A, I've got a better understanding of the airway issues and B, I've managed to build up my immune system over the last months. Good foods and a vitamin regime. (Vits B12, C, D3 plus a good multi Vit/mineral).
This eating of yours is a huge worry. Your immune system must be totally depleted and you've nothing left to fight infections and too weak for you body to work efficiently.
When I first realised something was very wrong I went to GP to ask "is it possible for Symbicort to stop working so well"? He said "No"! How blooming wrong he was!! Grrrrr
Now I too am on Seretide accuhaler 2x250 morning and night (it's given me throat thrush) plus the blue Easi-Breathe. .... I can decrease the Seretide to 125 when I'm well ie in summer.
I wish you luck and really hope you can eat a bit more, fortified soups? Little and often is the best way xxxxxx Peeg
Some great replies there Huggs. I cannot add to any of them only to agree your diet is very bad. Please see your doctor and get some prescribed vitamin drinks. They have all the proteins you need for a good diet and are high in carlories as well. There are lots of different makes so you should be able to find one you like. Incidentally cheese is a high mucus producing food as are all dairy products. In your condition best to be eaten sparingly. Good luck
Asked for explanation of COPD in search healthunlocked.com/blf/post... explained by the BLF very clearly making it simple to understand.
Thank you all so very much for replying to my question and giving such informative answers (especially you Lesley-Anne), and for everyone's practical advice. Peeg, I have not yet been diagnosed with Bronchiectasis as on my last visit my GP mentioned she thinks I may have it. I see her tomorrow about this, how I am getting on with the Spiriva and to address my appetite issues. I self referred myself to the physio department as I am in such pain from my neck which the physio thinks is due to my coughing as well as cervical spondylosis. He advised me to take Complan which I started immediately and recommended that I see a dietician. At the moment I am just a bit overwhelmed about it all and as I live by myself and very independent I do not tend to tell others too much about how I am feeling. I know this is not the best thing to do and am trying to improve!! Thanks again everyone and I will let you know how I get on.
I wish you all the best, huggs, this is a lovely site. So many friendly people, and lots of advice, sometimes we don't get answers from doctors, and need re-assuring, this site really helps. Take care, and try eat little and often, you will get there in the end.
I walked around for years with the label of asthma from my surgery. This was later changed to COPD and only later still, when they discovered I had a productive cough then an infection which wouldn't clear, that a CT scan proved I had Bronchiectasis. It was widespread so a bronchoscopy (hoovering out of the lungs!) then followed and revealed that it had become impacted and probably been there for a long time. A CT scan seems the way ahead for you. As soon as the specialist saw mine he said "You haven't got COPD". You may well need Mucodyne, Spiriva and Serertide - brilliant drugs! Good luck.
Hi, if you have memory problems about taking your meds, ask your doctor and pharmacist to blister pack your meds. They put them in a card for the right dose and date and time, so once you've taken them the blister is empty and you'll realise that when you go back to take them again, it's brilliant. Keep going. X
Thanks Claudine and need to breathe. I stated in my question that I have been on ventolin, and seretide for years due to asthma. I have just recently started on Spiriva and mucodyne which I am responding very well to. The Spiriva has made such a difference to my cough and I am so glad its helping you as well Claudine. The mucodyne is also helping. I think you are right in that having a CT scan is the next thing to do. Thanks also need to breathe for your advice in managing my medication. I had a pill box that I bought years ago for this purpose and lost it. It is really just being stubborn on my part in not getting another. I am trying so hard to manage with the least amount of help possible. Prior to my ill health I was the person giving care and it is hard to adapt to it being the other way around. I realise I have no choice and just have to get my head round everything. Thanks again everyone and you all take care. xx
I said in one or more of my replies to you all that I'd let you know how I got on after visiting my GP. Well, here goes. I have been referred to a respiratory consultant as she thinks I may have bronchiectasis. She had mentioned this before but wanted to see how much I improved with Spiriva and Mucodyne. There has been a lot of improvement in terms of coughing and a little in terms of breathlessness. My diet is appalling and so have been referred to a dietician, although I don't know how that will help as I just cannot eat. I am also getting more bloods done. There is about a months wait to see the respiratory doctor and I honestly don't think I can last that long. I am so weakened and exhausted that I sometimes cannot make my toast and there is only so much that your body can take. I am optimistic by nature but also a realist. I am at the scary stage right now and just trying to get my head round it all. Oh, and I am seeing a physiotherapist over severe neck problems which he thinks are due to posture because of my prolonged and violent coughing. I may have mentioned that I live in a village on a small island and my physio happens to be a near neighbour. He is going to refer me to a colleague of his who specialises in copd. I can't believe it (typical me of course) that I am going to be seeing 2 physios at the same time for different things.! One of the other freaky thing about all these lung and airway conditions I have developed is that I have never smoked a cigarette in my life, never been exposed to chemicals etc nor been in company for too long where there were smokers. All my life smoke has caused me to cough so I avoid it like the plague. In fact I am so indignant about it all that if I could write a strong letter of complaint to someone I would. Ha ha.
Sorry about being so long winded, but I am pretty isolated as I have no family and my friends who I would normally talk to in depth about such things are having hard times theirselves at the moment. One of them lost their lovely daughter to ovarian cancer just before Christmas. I was close to her and am still very good friends with her parents.
Again, I would like to sincerely thank everyone of you who responded to my question. From every reply I learned something and I just want to reach out to you all and hug you. I know in my previous thanks I did not mention everyone, but there were so many of you I couldn't get to it all. I am so grateful and feel more supported now than ever. Thank you, and one day if able I hope to be in a position to help someone. My goodness me, I do rabbit on!
Sorry if I am being too long winded as I realise this is a serious health forum and not a thesis for university! I hope you all keep better and get the help you need and deserve.