Mum with bronchiectasis

[kimmyb_83]

Hi, I'm on this forum on behalf of my 67 year old mum suffering with bronchiectasis. The support we've had from NHS has been pretty poor, so I'm on here just looking for some peer support and advice on how best to manage the condition.

We've had some pretty scary episodes over the last 18 months, where mum has been very seriously unwell with chest infections. My mum had cancer over ten years ago, is peg fed as a result and has literally been to hell and back. Despite this, she tries to live her life to the fullest and has 4 little grandchildren with a fifth on the way in Sept! Her recent diagnosis of bronchiectasis (due to the repeated infections and lung damage) has really changed her quality of life. She wants to 'do' but it just holds her back, it's like she's trapped in her body because of it. I feel that health practitioners have somewhat given up on her, as she has so many health problems, but prior to her chest problem, she had a very full and active life (even being peg fed!). She's only 67 and has so much to live for, so any help or advice would be gladly appreciated 🙏🏼

If you've managed to read this far- thank you! 😀💗

[skischool]

Kimmy.The fact that your mum has to be fed by peg tube will mean that you should have a care plan registered with your gp Go directly to him and demand that her care plan encompasses all of her medical conditions and that she has access and consultation with all within the NHS that can manage and give her a decent quality of life.Easy said i know but i have been there and done it over the last 4 years and you will really have to fight your mums corner head on.Good luck and best wishes to your mum...skis

[cofdrop-UK]

Hi kimmy and welcome. So sorry to hear about your dear Mum's health issues. Does she have a consultant with a special interest in bronchiectasis - very important. S/he should refer your Mum to a respiratory physio and arrange a management plan.

I've had bronch all my life but I have in my later years developed other health issues and I know how difficult it can be when you have other things to deal with.

You say the service you have had from the NHS has been poor - could you expand on that. Just wondering if it is your GP or the consutant side of things which are problematic.

Please let us know if there is anything specific and there will always be someone around who can help and/or support you.

Does your GP take sputum samples. The reason I am asking is the lab will report what bugs the sample has grown and what antibiotic it is sensitive to.

We are here for you and your Mum.

love cx

[Hidden]

Hi kimmyb and welcome. I can't really add much to cofdrop's excellent advice except to say that bronchiectasis is very complex and needs a combination of specialist expertise and treatment together with self management. With this it is possible to live a full life. I am 67 and was diagnosed with extensive bronch at 3. I have had a full and busy life and still seem to do more than some of my 'healthy' friends when it is behaving itself.

It is crucial that your Mum has a bronchiectasis specialist, you can find one closest to you on the internet, usually at big teaching hospitals. She should then be under their care and they will explain to her how to recognise when she has an exacerbation ( infection) coming on and also the physios will teach her how to empty her lungs every day. The specialist will also write to her GP telling them how to treat her. Many GPs do not know much about bronch and tend to treat it like COPD. Insist on the referral to a bronch specialist.

Doing as much gentle exercise as she can ( walking is great) will keep her lungs working, help to loosen any mucus, keep her strong and lift her spirits.

You are a great daughter to be trying to help your Mum.

I hope that helped a bit.xxx

[Sparkywoo]

I think they've said it all. Having a specialist and a physio manage my condition has made such an incredible difference. It seems to be a condition that is still not thoroughly uunderstood in general practice. My consultant wrote to my GP with a care plan for me and if I have any problems my GP now rings the consultant direct. You really need to push for specialist care and a plan to manage the Bronchi alongside your Mum's other conditions

[sarcoid1234]

I don't think you mention if the bronchiectasis means she has phlegm/mucus on her lungs.I have a different lung condition that causes me to have a lot of phlegm on my lungs. I have just started a Pulmonary Rehabilitation course and there are two people with bronchiectasis on the course. Your mother could ask to go on a course, although there might be a bit of a wait until a place becomes available - mine lasts 9 weeks. If she has trouble with breathing she could ask to be visited b a Respiratory Nurse

One of the people on the course I attend who has bronchiectasis says he has lot of mucus in his lungs and takes two capsules 3 times each day prescribed by the doctor which helps clear the mucus.

Also, there is a lung clearance (cough up phlegm/mucus) technique, taught to me by a respiratory physio which I do every morning and at bedtime to help me cough up the mucus. Look on the internet for Active Cycle of Breathing Techique (ACBT). I have been told if mucus/phlegm is not coughed up it might cause lung infections.

[kimmyb_83]

Hello everyone, thank you so much for your kind messages- I'm overwhelmed at the response! I've really felt cast adrift from services as no one seemed to have any answers/info or advice and we haven't met anyone with the condition either.

Mum has the condition where she is making too much mucous. She has a suction machine at home, but has a pretty ineffective cough following her cancer surgery ten years ago. She had colomycin antibiotic via neb twice daily, takes mucodyne and we give her back tapping twice daily to help bring the mucous up ( something that we've basically taught ourselves-thank goodness for YouTube!- as the only physio we have ever seen was for a brief moment on a hospital admission).

I just feel I'm constantly trying to fight for services, I keep asking for a care plan to be put in place but nothing ever happens. I've fought to get her iv antibiotics at home- which she has had successfully- but it took days of messing about with GP visits, trying ineffective Antonio and as you all appreciate, time is of the essence in such cases. Mums condition actually significantly deteriorated after contracting pseudomonas in hospital. They took her off all meds and basically said see how it goes because they antibiotics weren't working. That was in Jan 2015. By some miracle she self healed and after ten weeks in hospital ( with MRSA, cdiff and a super bug😡) she managed to come home (at 6.5 stone😔). The admission itself almost killed her, but at no point did I know that she could have had antibiotics at home. It was never suggested.

They STILL try to push for admission now (had a recent bug after ten months clear) but I have to fight to keep her at home. She had iV meds for three days and was much better thank god.

I just feel it's a constant battle. She's under weather today so trying to get district nurse out to do bloods but to no avail. Sometimes mum can't quite work out if she's coming down with something or just having an off day, a quick blood test can check infection levels and put her mind at rest or get her on antibiotics straight away.

We've got no bronchiectasis expert to refer to, she was due to see chest consultant but someone misplaced her referral and she's only now had an appt when it was due in Jan! We knew nothing about it! I just feel like I'm banging my head against a brick wall all of the time😡 We live in Wales, do you think that would make a difference to her care pathway?

Thank you all for listening 🙏🏼

[carolg1]

Hi I am just the same as your mum but at the age of 61. Is it her breathing that holds her back so much as well as all the fatigue and rubbish or is she like me and constantly having to bring up gunge, you are so right the medics just seem to scratch their heads and say it's the nature of the beast !! Which does not help, I know for sure this site has saved my life without a doubt any questions just ask and someone on here will give you sound advice, good luck and she is so lucky to have you batting for her xx