Consultant appointment after bronchiectasis diagnosis

[Treed12]

Hi! I haven't seen my consultant since before my bronchiectasis diagnosis back in March. A CT was ordered after my first appointment, i guess this is my follow up, in person anyway. I've had a second ct and bronchoscopy and am now on azirythim(?) I want to get the most out of my appointment, my gp has no idea how to deal with me and im very much still learning. I read about others having physio and more help/support, about doing chest clearance etc and exacerbations. I have no idea. I have severe asthma also so i feel the line is a bit blurred. Any suggestions as to what i should be asking? Researching online has only lead to more uncertainty, so i wanted to get real opinions please 😊Many thanks

[RoadRunner44]

Hello, I too am a sufferer for many years. Basically you should be asking the consultant what will be the plan for the future, In the meantime why not ask yourself what you are unsure about and questions should come from that. Jot your concerns down on paper. It doesn't matter how silly they may sound to you, it's your health that matters and these uncertainties need to be addressed. . Also, the more information you can acquire the more confident you will become at managing your lung disease. There is a lot of information on line as well as this group. Why not tap in online QUESTIONS TO ASK MY BRONCIECTASIS CONSULTANT. You may get some ideas from there. Good luck and let us know how you get on.

[Caspiana]

This is definitely a question for Hidden . I hope you don't mind me tagging you Littlepom but this is your expertise. xx 😘

[Hidden]

As starters, your consultant should be offering you an appointment with a Respiratory Physio, who in turn will show you techniques for clearing mucus from your lungs and breathing techniques. You will probably be taught postural drainage first, have a look on YouTube.

Your consultant should tailor medication to you and your conditions, I too have asthma and bronchiectasis so we don't always have the same treatment as someone with bronchiectasis only.

Think about people you regularly associate with that have lung issues, ask your consultant when you shouldn't be together, ie if either of you have some infection etc.

Write your questions down, you will forget them in the consultation ! Your resp. physio will also be able to answer questions so don't worry about that question you forgot to ask ...

[Hidden in reply to Hidden]

There is a misconception that bronchs can infect other people, particularly other bronchs. This is definitely not so and recent research has proved it. The confusion arises because some with cystic fibrosis and colonised with a certain pseudomonas can pass it between themselves if in very close contact.

[Hidden in reply to Hidden]

I have personally experienced transfer of bugs with friends with cystic fibrosis.

[Hidden in reply to Hidden]

Cystic fibrosis is not bronchiectasis. They have a whole different set of circumstances in their lungs. As I said, they can pass a certain strain of pseudo between themselves.If they passed anything to you it was more likely to be a virus which anybody can pass to anybody.

It is very unfair to suggest that a person with bronchiectasis can pass the bacteria which colonise their lungs to other people. I have brought up 2 children, have five grandchildren and numerous friends. I have never passed anything on to them but they have donated plenty of their viruses to me.

[Hidden in reply to Hidden]

I appreciate you reply and understand CF is not bronchiectasis. Maybe you could share your response with the 3 consultants of the 3 people involved in my situation as they do seem to think differently and have individually advised us accordingly.

[Hidden in reply to Hidden]

My information is based on scientific evidence and is the opinion of my consultant who is co chairman of the committee which wrote the current bronchiectasis guidelines. She is one of the formost experts in bronchiectasis in the country and I think that is sufficient. Maybe your 3 consultants would like to check with her.

[Hidden in reply to Hidden]

Sounds like you need to advise the NHS on behalf of us all.

[Hidden in reply to Hidden]

The NHS ? No just those who are not as experienced in bronch as true bronchiectasis specialists and tend to give advise which is neither helpful to those living with the condition or based on scientufic evidence. As I said, they can obtain the correct protocol from those who are truly versed in it. I am not going to continue this conversation as despite evidence to the contrary you have obviously decided that we bronchs are nasty germ spreading individuals who should live our lives in isolation. Thank you very much. It is hard enough living one's whole life with a debilitating ,anti social condition without having someone wrongly adding another layer to the difficulties.

[Phil40]

Yep, definitely request Respiratory Physio.

I think it is supposed to be offered in every area and provides information, support etc so you can make informed decisions and sort your care plan out.

Regards

[Patchpoppy2]

Hello Treed12. You need to ask your consultant to send you to a physio. They will show you how to clear your chest with exercises, called huffing. They can recommend you use a flutter valve which helps by opening the airways, they can also refer you to pulmonary rehabilitation which teaches you breathing exercises and general exercises to help you be able to breathe easier. I've had asthma since birth and bronchiectasis since 2000. Hope this helps.

Take care

[GintyFerguson]

Dont bother with the internet! According to that I should have been dead 10 years ago lol! Bronchiectasis r us is a good site for info. Ask to see your xrays or scan and be talked through the severity of your condition. You need to ask for rescue antibiotics to have at home and be referred to physio for clearing chest advice. Stay hydrated and eat well, exercise as much as you reasonably can. Rest well too. Dont stress. Doesnt help. Good luck.

[Bella395]

Treed12 - having severe asthma along with bronchiectasis complicates matters somewhat so it’s good that you have a consultant who referred you for ct scan. A big trigger factor for asthma is infection and people who have bronchiectasis are prone to them. You therefore need to minimise the risk of infection as much as possible. Good hygiene, keeping away from folk who have colds etc will help. Ask your consultant about the preventative vaccines eg influenza, pneumovax, haemophilus. Azithromycin might help prevent infections so hopefully it will be useful for you.

Regular lung clearance is key so see the physiotherapist for advice. Mucolytics and devices may be helpful. Keep your asthma under good control if possible because bronchospasm might hinder clearance.

I would agree with the comment about having a care plan because from experience of looking after my OH when exacerbations occur it can sometimes be difficult to know if it’s the asthma kicking off or an infection. These days it’s usually an infection that triggers the asthma but he has intrinsic asthma so doesn’t have any particular allergies. Above all, you know your chest better than anyone so don’t be fobbed off by medical staff if you think there is trouble brewing.

[VELoce21]

Hi Treed12 I found this website to be very helpful. You don’t know what to ask at your first appointment. I had physio (chest) and found it really useful. I improved after taking Azithromycin. I haven’t needed a biopsy so can’t comment on that. Good luck with your bronchiectasis.

[Smoggy1990Boggy]

Ask if the consultant will refer you to pulmonary rehabilitation it’s beneficial in so many ways and very popular

[Dream1]

Definitely ask for a referral for respiratory physio. 👍🏻 I still feel like I’m bumbling my way through it and it’s now a year since my diagnosis of bronchiectasis.

[Cateran]

Is there a bronchiectasis support group near you Treed12? They can be a great help in so many ways, including the regular companionship of fellow patients in the same boat as yourself, especially with their knowledge and experience of consultant appointments.

[Hidden]

Hi Treed12. You have had such good advice from the lovely people on here. Particularly those who also have severe astma, which as they say, complicates matters. Do check that the consultant whom you are under is a bronchiectasis specialist, not a general respiratory consultant. This sounds like nit picking as they all put themselves across as knowing about lung conditions but most general respiratory consultants are only trained to a very basic level in bronch and owing to its comparative rarity compared to copd, have very little experience in it. This can be crucial because bronch is very complex, the treatments very diverse and everybody who has it is different. As you have already discovered, GPs know nothing about bronch and are way out of their depth from the start. They need the bronch specialist to inform them of the treatments that you are to have. Most of my treatment comes directly from the hospital. So, if your con is a bronch specialist, that is a good start. If not, look for one in your area. They are usually at big teaching hospitals. Pluck up courage and insist that you change to the bronch specialist. It will be the best thing that you ever do for yourself. Then you form a good relationship with their secretary through whom you will have access to your con if you have a problem.

Learn as much about your condition as you can and listen to your own body. You will soon recognise when an exacerbation is starting up and you need an antibiotic other than the azithromycin which you are taking and which hopefully will keep these to a minimum.

The very best advice which you have had from everybody is to get the help of a physio to learn to empty your lungs of the fluid in which the bugs just love to party and breed. Most bronch specialists have a chest physio in their clinic.

I hope that you have a good specialist in asthma who will cooperate with the bronch consultant because as you know, asthma is a specialism of its own and requires intensive control.

Final advice. You are not an invalid. Live your life to the full and have fun!

[Treed12]

Thanks for all the great advice. Love this group, always very supportive. I've got a list of questions ready, feeling hopeful my consultant can help 😊

[Treed12]

Had a very helpful appointment today. Feeling positive. I was referred there and then for physio. Just finished my first try and im shocked at how much gunk came out! Blood too but i guess im getting the hang of things. He wasn't too worried about the bronch for now but he said its early days and will be monitored and gave me some antibiotics to cover me for now. Had a blood test for my immune system to get some answers about all these infections. Hes more concerned about my asthma tho so has added phyllocontin. He said im not eligible for the injections because of my allergy markers and im too young for long term steroids yet. Got lots of advice and feel very supported 😊 one thing he did say was that he was surprised i was working, pretty much full time teaching. Hes not the first to say it. In fact my last docs app i was told to look into early retirement. Im 33!! Not an option and i don't want to. Work is sooo hard tho, it exhausts me. Can anyone share their work/life balance? Thank you!

[Bella395]

It's good that you are now feeling so positive. OH was on Phyllocontin for some years. Aminophylline is an effective bronchodilator but doesn't seem to be used as much these days. Many years ago I took OH to the GP and I remember him giving IV Aminophylline. It worked like magic, suddenly the wheezing stopped and he could breathe - it was amazing to see. Anyway, onwards and upwards. Hopefully you will be able to keep yourself as well as you can be. On the subject of work, you will probably know when the time has come to reduce your hours or stop but try not to push yourself too much. Be alert to your body and your health needs.