Hi - was recently diagnosed with bronchiectasis. I wondered what the long term implications of the illness are - my consultant just said that it 'grumbles along' when I quizzed him about the prognosis... I was too overwhelmed at being given the diagnosis to ask him to elaborate. Can anyone help me with what I might have to face in the future?
It is really great to have a group of empathetic individuals to talk to about this problem. Thanks everyone for being there.
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I was diagonosed last sept still trying to work out what it all means and how best to cope apparently mine is extensive in both lung,s far as i know basically just have too manage it with antibiotics and physio and lots of visits to hospital not much fun but some people have a lot worse things..... xx
I have been using physio and a nebuliser without any improvement. I have my name on a waiting list for a Pulmonary Rehabilitation course which is a national programme for people with lung disorders. It is a 6 week course run by physiotherapists with a combination of exercise, dietary and lifestyle help/advise. Hope they run a course near you.
Kind regards
I have bronchiectasis and basically you have to work hard to make sure it doesn't get worse. It took ages to get my medication regime correct but now it is I haven't had a flare up for ages - 6 months. I do take a lot of medication and I have to clear my lung of gunk twice a day. I also exercise at the gym with a specialist trainer. Exercise is really important. Ringthe helpline as they can advise you on the type of lifestyle changes needed - nothing drastic. There was also a recent webinar on bronchiectasis that I suggest you watch as that was very informative.
I work full time but do get very tired. My Gp wrote a fit note to say I should work from home twice a week as I have work that I can do at home. I also have my shopping delivered from the supermarket and my best luxury is a cleaner!
Take care
Judith
Thanks Judith for your info. I guess I just have to be patient and a bit more proactive so that I get better support from the hospital. I am on a waiting list for Pulmonary Rehabilitation which is a 6 week (nationally available) course run by physios. Will contact the repiratory nurse to see if there is anything else I can try to ease symptoms.
Kind regards
Hi Swimmer
I think it was probably a difficult one for your cons to answer as although we bronchiectatics have the same disease, we are still all different and our lifestyles and preferred methods of mucus clearnance and helpful drugs differ also. However I think his comment 'it grumbles along' is unhelpful and meaningless.
Do you know if your consultant has a special interest in cystic fibrosis/bronchiectasis? Very important in my opinion. You can check this out on your local hospital website or Dr. Foster. On another site I belong to specifically for bronchiectasis we have members in their 70s and 80s and I have had bronch since babyhood some 64 years ago.
So I would say your main aim and that of all bronchs is to help yourself to prevent any further deterioration and be your own advocate. I can totally understand you being overwhelmed but believe me as you become more used to it you will become more in control of it than it is of you. Arm yourself with lots of knowledge. This way you can fight your own corner.
Make sure your consultant has referred you to a pysiotherapist who will teach you techniques to clear your lungs and gadgets such as the acapella and you can work out together what works best for you. If you have already done this, really stick to it even though it's a bit of a pain in the bum sometimes. It's so worth it so the gunk doesn't become infected.
I assume he has you on a medication regime. I don't know if you use a nebuliser to administer a bronchdilator and saline or hypertonic saline, if not, you may want to ask him at your next visit if he thinks it would benefit you.
If it's not already happening you might want to ask your cons or GP for a supply of antibiotics so if you have an infection brewing at the weekend or holidays you can get cracking with the abs, physio and nebbing. Some bronchs benefit from prophylactic antibiotics, quite often Azithromycin Mon, Wed and Fri. Many think they have experienced less infections. However the drug didn't suit me - as I say we are all different.
Sorry if I've overloaded you with stuff. Enough for the mo, but ask anything. There will always be someone who can answer and no question is too trivial - if it's concerning you that's enough reason to ask.
Good luck.
Love XXX
Thanks Cofdrop (great name by the way) for your indepth response to my plea for help. I will follow up on what you have suggested.
I really appreciate your kind and thorough help.
Best wishes
swimmer
Hi Swimmer
I concur with everything that has been written in response to your questions. I was diagnosed in March following 12 chest infections over previous year or so which resulted in two hospital stays with pneumonia! Now manage but am useless at keeping to regime because I feel so fit!! ;0))
I have also got avium intracellular mycobacteria and evidence of nodular lung disease but last CT scan showed massive reduction of the nodules in both size and number so must be doing something right! ;0)
I've just got a new job (start Sept) but don't know how to honestly fill in the medical questionnaire. I've also been diagnosed with chronic unmanaged asthma (sorted with meds now though) and gastro reflux which can greatly impede health of the lungs so am on Omeprazole for that as well as sinus wash, nasal drops (for the bloomin' sinus disease!), mucolytic drugs (to stop mucus production) and Symbicort steroid for asthma. I've still got lots of pain in the chest but it comes and goes and definitely gets worse with stress (physios tell me that stress changes the way we breathe and that this also directly affects our ability to clear mucus from the lungs so it is ALWAYS important to do the breathing techniques that are recommended - regardless of whether you feel 'gunky' or not).
I feel 'afflicted' but, lately, have been so well that it has been easy to become complacent. I guess I'm not looking forward to the autumn and winter months which have hit me particularly hard since loss of my husband to brain tumour in 2009 which is when things on my 'immune' front started going downhill.
Life, eh?
Florence
Hi Swimmer
I just wanted to say that what everyone has said here rings very true for me too. I have bronchiectasis since childhood, but it has really only troubled me for the past 12 years (I am now 38). The diagnosis (or for me, my first serious flare as an adult) is very upsetting and you have to learn along the way to manage the condition.
I am very lucky: I think I've only had one chest infection in the last 18 months and hold my company's record for least days off sick. But that is because I keep the physio up, take care of myself when there are colds about, and swim several times a week when I can. I have actually managed to improve my lung capacity in the past 12 years and my lung function has not deteriorated, so the docs are pleased with me, and I no longer routinely see a consultant.
All the different things that people here are suggesting might sound a bit overwhelming, but I just wanted to let you know that I do not feel defined by bronchiestasis any more (I did for a while), and my hope is that you will not be either.
Best wishes
Gillian
Hi Swimmer
I have had bronc since I was a baby - diagnosed at 7 years. Am now in my 60s. have 2 children, have worked all my adult life and have tried to be positive about this illness. The advice given above is crucial to you leading a 'normal' life, especially psysiotherapy. Keeping a supply of antibiotics at home so you can start them as soon as an exacerbation starts is also crucial and send off a sputum sample immediately so your GP knows the best antibiotic to give you. Ihope all goes well for you - Good Luck x
Swimmer - I forgot to add, there is a very good site for people with bronchiectasis - its really worthwhile checking it out. Its Bronchiectasis R Us x
I was diagnosed about 2 years ago and found the long term antibiotics that I take Monday Wednesday and Friday. These have helped a lot but I'm finding that the amount of secretions I need to clear has increased. Is that usual? Ive noticed that if I don't drink much they're harder to cough up. I've had physiotherapy and have a good respiratory team but would appreciate any more information. Many thanks
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