Hello all, not been on for a while. My Mum is 92 and after long term cough and crackling in the lung was diagnosed with mild Bronchiectasis 18 months ago. She survived Covid in Jan this year. However breathlessness is worsening, xray shows nothing untoward. She is in salbutamol, carbosteine ( does anyone have skin rashes with this) and 3 weekly AB. Not under any consultant . Stronger course of AB just started as GP suspects infection ( telephone appoint). Oxygen ranges 91 to 96. Sometimes gasps for air. Lives alone and think understandably frightened. Luckily I am only 5 mins away. Any techniques or ideas to help breathlessness would be great. Awaiting cardi echogram to see if heart failure but GP not convinced anything other than age related. Is there such a thing as a private respiratory nurse who we could ask to visit and show breathing techniques too. Long post. Apologies. X
Bronchiectasis Breathlessness and Fa... - Lung Conditions C...
Bronchiectasis Breathlessness and Fatigue...any thoughts..
Your Mum is one tough cookie! There are several things which could be causing all of this. Taking into account that I am not medically qualified but have had extensive bronchiectasis for 68 years, this is what I think. It could be the results of covid or her bronch not being managed properly. Either way she needs a consultant who specialises in bronch. Respiratory nurses, GPs and most general respiratory consultants know nothing about it. They are not sufficiently trained and don’t see enough cases. Look in your area for a bronch specialist. They are usually at large teaching hospitals. Take the name to your Mum’s GP and INSIST. on an urgent referral given her age. A bronch specialist could also recognise if this is in fact damage left by covid, will advise the GP on which treatments to give and have a physio who will help your Mum manage it on a daily basis. Self management is the most important thing when it comes to a good quality of life.Don’t be intimidated or take no for an answer. This is your Mum’s health we are talking about, not the GPs ego given their lack of expertise. We have to be very proactive and vociferous in sourcing the right treatment.
My love, respect and best wishes to your Mum and Ihope that you get the help that she needs.
Thank you so much. I have asked 3 times for help with managing it and been told nothing can be done. A message was sent to a respiratory team who suggested a chest xray which shows nothing. I will persevere but feel paying privately may be only option!
The problem with bronch us that most expertise is in the NHS.A private respiratory consultant may tell you that they know about it when actually they don't. General breathlessness is not so much a sign of bronch. In bronchiectasis mucus accumulates in damaged lungs and airways and has to be expelled every day. If not, bacteria breed in the warm liquid and this results in an exacerbation. The mucus and the infection can mean breathlessness.More mucus which is darker thicker and larger quantities. Bronch can only be diagnosed by ct scan and xrays are useless in showing what is going on. If your Mum was not diagnosed by ct scan then her problem may come from some other lung condition. Either way she needs someone with more expertise than the GP. Put your foot down.
She was diagnosed by CT scan 18 months ago but was referred for chest xray this month which as you point out showed nothing. Thank you little pom x
Thanks Littlepom for your help as usual. Mum feeling marginally better at the end of a week.of Antibiotics but still breathless...spike to a different GP at surgery who has given a second week and for the first time ever requested a sputum sample! Progress. Also Cardiologist confident her heart is OK but urgent echogram due 15th June. Just awaiting Bronchiectasis specialist consultant appointment now to see where we are at and what may help. Enjoy the sunshine.
Onwards and upwards. Lab tests do't always show up the bacteria which is causing the problem in bronch as they are notoriously unreliable but worth a go. Hopefully the bronch specialist can put her on the right track. The breathlessness may be due to mucus which she is not getting rid of and she needs help to do that. Or some other element of a lung problem. If that is the case they can give her meds to help with that. Do let us know how she goes on.
Thank you. You are so helpful and supportive. Mum ventured into the garden today which is a positive..she has not wanted to do anything for 2 weeks. How are you? You always look after others!
Do you mind me asking what your initial symptoms were ? 68 years is a long time. You must be managing it very well. I have a problem with excessive mucus. Mine is whitish and foamy at times . I sometimes see green specks of mucus and I think I can smell blood. But either way it smells bad. I have had several chest X-rays it shows nothing at all. My mother died in her 40’s . Doctors didn’t know what was wrong when she was alive. But her death certificate said the cause of death was respiratory failure, bronchiecstasis. I was only ten years old. But I can remember she would be very SOB. My father would have to give her treatments every morning . He would pat her in her back and she would cough up the mucus. She also had a foul smell to the mucus. This was in the late 70’s. We sometimes think she may have died from second hand smoke. My father was a smoker. I know there wasn’t a lot known about how second hand smoke affected others. I have mentioned to my doctor about the excessive smelly mucus. I also mentioned to him about my mother having a similar issue but much worse. I have had a pulmonary function test. Which was normal. I can hear a funny noise like a fizzing sound in my throat when lying down. I have been to several doctors. They say it’s not sinus. But when I take mucinex I always see more and more mucus coming out. When this happens it attracts these tiny brown insects. Could this possibly be bronchiecstasis. I have no cough or SOB. When I exercise I feel fine.
Your question is very disturbing and requires a detailed answer. I hope you will forgive me if I come back to you tomorrow.
No problem
It doesn't apoear that you have been diagnosed properly. This can only be done by ct scan. Again, insist on a referral to a consultant who can diagnose bronch or dismiss it and will be able to diagnose any other condition that this may be.
I had several pneumonias from the age of 18 months and was diagnosed at 3 by bronchogram in 1953. At the age of 6 I was lucky enough to meet a radical doctor who started me on a lifetime programme of self management and drug therapy which is basically what we do today and gave me a quality of life.. I had years of physiotherapy, in classes and at home to teach me how to control how I breathed and to get mucus from my lungs. Also antiobiotic therapy from the early oral ones to the nebulised and IV versions which we use today. I had penicillin through oxygen twice each day for 6 years which got my lungs working again and my poor Mum used to have to lug an oxygen cylinder up the stairs every week. I was thrown into swimming pools, marched up cliff paths and forced to do sports.All that you tell me is of a condition which is not being treated or managed properly. Do you have a specialist bronch consultant? If not please find one. GPs and general respiratory consultants know virtually nothing about it. Do you scrupulously empty the mucus from your lungs every day? The smell suggests that you have a level of infection in there that is multiplying because the mucus that it breeds in is staying down there. It does seem that you are in need of a really good dose of the right antibiotic . Only a bronch consultant can decide on this and advise the GP, another reason to find one and insist on a referral.
Bronchiectasis is not caused by smoking but those who have it can be made ill by the smoke of others. As your Mother had bronch I suggest that you ask for an A1A antitrypsin test. This is a genetic condition which leads to damage to the lungs and infections which can result in bronch.
Finally, I don't know where you are leaving the mucus to attract flies but it should always be coughed directly down the toilet.
I hope that helped. I'm afraid that we have to be pro active in our own interests and vociferous in sourcing the correct treatments.
Thanks for responding. You gave me a lot of good information. Do you know if the doctor who helped you still has his practice ?
He seemed ancient to me in 1956 and is surely long gone. But the methods that he used on me have now been adopted and adapted as standard self management and treatment for bronchiectasis. You need to find a good bronchiectasis specialist.
Lol. I needed that humor. It will probably be almost impossible to find a bronch specialist here in the south. I will definitely do my homework. Thanks again!
If we don't laugh we despair!
If you can get to Southampton they have excellent respiratory dept with bronch specialist. I suggest looking on the hospital site or on the site of a big teaching hospital near you to find a name.
They are not handling it properly and are failing in their duty of care towards her. This happens so much that I get really tired of banging on about it.
Let’s hope the latest antibiotics do the trick and eases things . Did the GP ask for a sputum sample? To see what bugs her lungs have been growing therefore px the right antibiotic to clear it.
If there is no change in a few days could you ask if a sputum sample could be sent off?
Do you mean oxygen saturation levels? If so the levels aren’t bad . A fan may be useful ( handheld ones are good to help breathlessness)
There are some breathing techniques on BLF information sites. A basic one is breathing into the tummy through the nose for 5 seconds then hold for 5 seconds then blow out through pursed lips as if blowing a candle out for 10 seconds.
If breathing becomes too severe and you are worried do not hesitate to phone 111 though.
Hope things ease soon. Cx
Best wishes. Gentle breathing exercises may help. Has your mum been taught any? You can get advice from the nurses on this site.
Not been taught anything at all. Given diagnosis and left to it. Then moved on to carbosteine and ABs. Then added in inhaler. I have had more help from you lovely lot. Yesterday I contacted a private Bronchiectasis consultant. Not what we wanted to do but at 92 Mum wont have much of a quality life if her breathing cannot be helped/eased. NHS is so stretched that even if GP will refer it will be months I am sure. If consultant can help it will be a great, if he cant then we tried at least. X
Best wishes. I hope you get a satisfactory result. You're right about the time it would take to get an NHS consultation.
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