Bronchiectasis is diagnosis clear cut?

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Mandy Posted: 12-04-2009 1:04 PM

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I am just wondering whether anyone here has dilated bronchi without thickened walls and mucus plugging.  I had a CT scan in 2007 after asthma symptoms and chronic cough with mucus production not improving despite lots of meds.  My local hospital radiologist said it was bronchiectasis bilaterally but when I was referred to the Brompton shortly after the Consultant said as the walls weren't thickened and plugged with mucus he was not so sure even though his team were telling me it was and wrote it on chest x-ray forms etc.  I told the Consultant that I got a lot of pain in he left lower lobe especially when I had an infection and then was told there was something there and in a discharge letter he said the appearance was suggestive of bronchiectasis. 

Is there anyone on this forum that doesn't grow bugs like me.  The Consultant did say the infection may be lower down after I had a bronchoscopy.  My airways are hypersenstive and I get a lot of infections 4 to 6 weekly.  I gave up with the Brompton about 18 months ago as the Consultant was secretive, pompus and spoke to me as though I was about 5 years old, lol.  My local hospital want me to get a second opinion at another London Hospital but am so dis-illusioned with Doctors, (on (uesday was sent up to A & E with tachycardia and low blood gases and got three different causes who I am expected to believe?)

Am at the stage where I say sod it I'll manage it myself, lol!.

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SusieQ replied on 12-04-2009 1:34 PM

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Hi Mandy,

I was diagnosed with Bronchiectasis a few years ago after a winter of many infections - that apparently is what caused it in me.  My understanding is that normal tubes get saggy with infection and should then spring back once infection has gone away;  mine never got a chance to spring back and are now saggy and wonderful mucus traps - in the lower lobes on both sides.

My diagnosis came after XRays and CT Scans - almost by accident.  It was my annual scan to check progress of Emphysema and lo - Bronchi was discovered as well.  Not sure about thickened tubes as no one as ever mentioned that to me - the explanation I was given was saggy one.  I do get a lot of mucus, which I have to clear as best I can with breathing exercises and also Mucodyne from the Doc - mucus thinning stuff, which seems to work. 

Problem is that the mucus filled tubes are wonderful bug traps and they love to get in there and breed.  I am very careful about infections - stay in and rest as the first feel of something not quite right and, if it becomes infection, then I hit the antibios immediately.  The more infections the more the damage to the lungs.  My doc has given me an emergency supply of antibios to take and trusts me to know when to down them.

Wonder if a final visit to another consultant might help - it would be good to know what the hell was going on, wouldn't it and it certainly sounds as if there is something.  Brompton is renowned for its chest and lung stuff - as, I believe, is the Hammersmith.  Might be worth sharing your concerns about pompous consultant etc, with the referring body, i.e. hospital and/or GP and see what happens.  Might even be another consultant you could see at the Brompton.  How about exploring all avenues before making up your mind on the next step?

Good luck whatever you decide to do. 

Post moderated / edited by June 17.44 hours 04 December 2009

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michelle replied on 12-10-2009 9:10 PM

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hi mandy,

i go to brompton for bronchiectasis. i see dr wilson, i am not too keen on, although when i had to see him about transplant referral he was brilliant, didnt hide anything told me straight. must say muc h prefer is assistant dr abdul i think his name, lovely man. i lost touch with brompton for many years cos i didnt like drs. so i agree go else where if you can. or be straight with them and tell them your not happy.

regards michelle

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Mandy replied on 12-15-2009 12:37 PM

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Hi Michelle,

Do you still go to the Brompton?.   I've yet to meet a patient of Dr Wilson's who hasn't found him patronising and arrogant, lol and have heard that his Assistant is very nice but you have to be well controlled  before you can see him and didn't get to that stage.  

I know I'll have to go to a specialist centre but Dr Wilson has really affected me badly and have lost confidence in Doctors as earlier this month I went to my GP with another infection and was told I was very tachycardic at 160 and oxygen was a little low my GP said due to infection and was sent to Casualty.  Saw a Registrar  who said tachycardia was due to nebuliser,  even though hadn't used it for days, then saw a Consultant in General Medicine who said it was due to Phyllocontin and has ordered a 72 hour ECG.  Who the hell am I supposed to believe, lol.   My trust has deteriorated even further but will discuss it when I go to the Chest Clinic in January.

Do you grow Psuedomonas with your bronchiectasis as I know that is the most common bug?.

Kind regards

mandy

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michelle replied on 12-15-2009 10:09 PM

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hi mandy,

i do still go to the brompton, i was put back in touch by consultant at m local hospital because he though it best to be treated there. dr wilson actually apologised to me, he had just taken over from professor coles who i used to see many years ago. dr wison was a young doctor trying to establish himself and i felt he pushed some of professor coles patients out. i got disheartened and stopped going. i am back there now but mainly see his assistant as i am quite stable. i think if you tell dr wilson straight that you are no happy he will be ok. you should contact him now while you have an infection if you are not satisfied with gp. i m quite lucky in that i dont grow any bugs. do not wait until january, give them a ring they will advise the best antibiotic to take. they always give me orelox. dr wilson swears by it.

regards michelle

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derekbailey replied on 03-08-2011 4:24 PM

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Hi to you,

I was diagnosed with Bronchiectasis some four years ago. But the more I learn, the more I think that it has been there virtually all my life, now 65yrs. My understanding is that each time you get a severe infection your lungs are damaged a little, and that damage never repairs itself. I continued to have a roughspell for a couple of years, with many admissions. I have been on nebs. colomycin for four years now because of persistent pseudonomas. Have been infection-free now for virtually a year! But is this because I am now on full time oxygen with a concentrator. I now have liquid oxygen for getting about with.

I would be interested in any thoughts on oxygen through a cannular. I am basicaly a mouth breather, not so happy as when I am using the mask.  So when away from home I find that I am always glad to get back to the house.

Also I am now finding it more difficult nebulising my drugs (through a mouth piece) than I did six months ago. I cannot find out if it 'is me' or if my mouthpiece is getting tired. I have changed the nebulser with a replacement from the hospital, but cannot get the mouthpiece changed 'like for like', the hospital can only give me a shortlife disposal type, which is a disaster!  I wonder if it could be me now, just not having enough puff to do the job.

I have been using a 'Flutter' to help clears the mucus, but can now only do one huff at a time, instead of the many which I used to do. Postural draining is difficult now, I just do not have the huff.

Spontaneous clearing does happen, also I do tend to easily clear (just one load) straight after eating.

It will be good to hear from others, but we do all seem to be so different. This must make it difficult for GP's to advise.

Derek

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Ian replied on 03-08-2011 4:51 PM

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Hi, Derek Bailey  when you are using LOX do you have a conserver unit or is it constant  flow that you are using if you are only shallow breathing this could be a factor in how much oxygen you are getting. Do you have an oximeter to check your sats when you have been on the cannula and see if it is working for you, this might be an issue you could raise with your respiratory nurse.

Welcome to the forum and if you enter questions into the search box you may find information on your other questions or call the helpline 08458 505020 between 10am and 6pm to speak with the very helpful staff.

al the best

Ian

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harry replied on 03-11-2011 7:11 PM

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derekbailey:

Hi to you,

  I have been on nebs. colomycin for four years now because of persistent pseudonomas. Have been infection-free now for virtually a year! But is this because I am now on full time oxygen with a concentrator. I now have liquid oxygen for getting about with.

Also I am now finding it more difficult nebulising my drugs (through a mouth piece) than I did six months ago. I cannot find out if it 'is me' or if my mouthpiece is getting tired. I have changed the nebulser with a replacement from the hospital, but cannot get the mouthpiece changed 'like for like', the hospital can only give me a shortlife disposal type, which is a disaster!  It will be good to hear from others, but we do all seem to be so different. This must make it difficult for GP's to advise.

Derek

Hya Derek,

four years with same tired  mouthpiece ?  sounds like a Derek and Clive sketch, dont mean to sound flippant but I was doing similatr only just washing O2 tubing In soapy water

disposable ...is the ONLY safe thingy, need to be changed regular, but what would I know,  I suggest you phone the helpline for confirmation etc   

because persistent pseudonomas love somewhere damp and warm to be safe in nebulising and oxygen mouthpieces, masks   etc.