I am new to this site. I have asthma and bronchiectasis. I could do with some advice as to what I should ask the consultant. Please

[Ruby1949]

Diagnosed with bronchiectasis in February and after lung function tests with Asthma.

I am having a telephone consultation with the respiratory consultant on Tuesday.

I have no idea what to ask her. Could someone please help me.

Thanks

[Oshgosh]

Perhaps you could ask about treatment plans

Could ask about how 1 condition can affect the other.

You need to get pen and paper handy,write down stuff as it comes to you.

I usually find that my consultants cover most things.

I cross stuff off as we go along,then what’s left ,just ask at the end.

Hope all goes well.

[Ruby1949 in reply to Oshgosh]

Thank you Oshgosh,

I will take your advice and ask away . I will also write a list.

I’m sure I will be back on this forum again. You all seem very educated and friendly.

[Oshgosh in reply to Ruby1949]

Hi,I don’t know about me being educated,it’s just what I have picked up As I have gone on ,.others on this forum are much more educated me. However I am friendly.

Take care

[Ruby1949 in reply to Oshgosh]

Thank you Oshgosh,

I’m feeling less nervous now, my appointment is tomorrow morning.

I’m so glad I have somewhere to go to get answers.

[Hidden]

Hi. I have bronchiectasis and asthma. I'll give this some thought & get back to you tomorrow. Hopefully one or two others will be along too.

[Ruby1949 in reply to Hidden]

Thanks 😁

[Koyli]

Ask to go on a pulmonary rehab course. Get some Breo Ellipta inhalers. All will benefit you.

[Ruby1949 in reply to Koyli]

Thanks Koyli. What is a Breo Ellipta inhaler. I have a ventolin inhaler and a fostair one. I will ask all the questions that are suggested to me.

[Smyth]

Hello, could you give me your opinion on Herbal tea called Mullien , they say it is very good for helping to clear Mucus from your lungs , could you give me your thoughts on this product.

Regards

Jimmy

[Hacienda]

Hi Ruby & Welcome to the forum, As Oshgosh says, Write a list, That is what I do before Shielding, and since, on Telephone Consultations. With Time and asking Questions you will be more Knowledgeable about your Condition. We are here to support you & give you some advice as best we can. Stay Safe & Well. C. XXXX

[Ruby1949 in reply to Hacienda]

Thanks Hacienda,

Just having somewhere to get advice from is very reassuring. I only know what I have read and sometimes it’s confusing.

[Hidden]

Hi Ruby

Some good suggestions from the others there. You will need to know how to organise your daily lung emptying, which is crucial in keeping down the bacteria which breed in the pools of fluid down there. At the moment this is difficult because normally you should be able to have time with a physio in clinic to go over that. If you ask, she may be able to have the physio call you.

Most importantly, you need the consultant to explain how you recognise the signs of an exacerbation and what steps to take. Following the consultation she should write to the GP and to you, explaining which antibiotic to give you, in what dose and the length of the course ( usually 14 days for bronch). She should also tell the GP to supply you with a course of those abs ( and maybe steroids for the asthma) to keep at home as it is important that you start them at the first sign of an exacerbation. GPs know very little about bronch but they are usually our first port of call when we get poorly. Mine are very cooperative with my consultant and are also aware that I know more about my lifelong complex condition than they do.

I have had 67 years of studying it. They get an average of a week during basic training, if that.

Make sure that you have a phone number or email for the consultant’s secretary. If you have problems with the GP or the usual antibiotics not working, a call to the secretary requesting advice from the con is usually the best thing. These secretaries are usually really helpful and kind.

I hope that helped a bit.

[Ruby1949 in reply to Hidden]

Hi Littlepom, knowing when I’m having a flare up is a great worry of mine.

I hope I learn pretty quick.

The consultant gave me doxycycline for 6 days. Should I suggest 14 days?

Thank you so much for your help.

[Hidden in reply to Ruby1949]

Your consultant should know which course to give you, especially if she is a bronchiectasis specialist. I have never had doxy because it is not suitable for me but there are several bronchs on the forum who do find it useful and hopefully they will tell you what course they have. If your consultant is not a bronch specialist it is important that you are transferred to one. You can usually find them at big teaching hospitals. Find one on the internet, take the name to your GP and insist on a referral. This isn’t a personal thing against any doctor but the need to have the best and most expert care for what will be a very long relationship. With bronch a close relationship with the right consultant makes the difference between struggling along and living the best life you can.

[Hidden]

I also have asthma and bronchiectasis.

You need a treatment plan.

Ask her if and when you can see a respiratory physiotherapist so that you can learn how to cough up the mucous.

Ask her if she is going to tell your GP to prescribe a back-up antibiotic for you to keep at home in case of flare-ups.

Ask her if there is a contact number for help from the hosp. department if necessary.

Ask her to describe the symptoms you might experience that should lead you to start your back-up antibiotics.

But in general it's not as bad as it can seem at first. knowing you have the back-up and support of your GP and hospital department lowers anxiety.

[Shimmysue]

Hi Ruby and welcome to the site! I too have asthma and Bronchiectasis. The advice from Littlepom is great and I would echo that you need to make sure your consultant is a Bronchiectasis expert, as some don’t have much experience of the condition and treatments are different than other lung conditions. Mucous clearance every day helps keep your lungs clear and your consultant should refer you to physio for this and pulmonary rehab once things are getting back to normal.

I take Carbosisteine to help thin mucous, azythromycin 3 times a week to help keep the bugs in my lungs at bay, symbicort inhaler for asthma. I have a rescue pack of antibiotics and steroids in the house in case of an exacerbation but before I would start them I would get a mucous sample and send off to my docs to make sure I take the right antibiotics.

Keeping fit and active once you get control of your condition really helps, as does a healthy, balanced diet and drinking lots of water.

Good luck with your appointment tomorrow.

[Milandra17]

Hi and welcome

I have bronchiectasis and my first port of call in the event of a flare up is the local Respiratory Team. They will come out to me the same day and take a mucus sample away and let me know whether to start taking my antibiotics after listening to my chest. Of course if it's a weekend or Bank Holiday I start my antibiotics anyway, after dropping a mucus sample down to the collection box at the hospital.

It's a really useful service as it means that I bypass the GP surgery where it's impossible to get a same day appointment a lot of the time.

[Ruby1949]

Hi Milandra 17,

Thanks for replying, I have dropped mucus samples off at the hospital before. I will ask tomorrow if I can do that.

I couldn’t think of any questions now I’ve got loads.

I’m glad I came on to this site,

[Hidden]

Sorry Ruby, I forgot to get back to you, which wasn't very helpful of me! But now I see lots of others have given you good advice.

I'd reiterate that the best things you can do to keep bugs at bay are (a) daily chest physiotheraphy (b) take preventative antibiotics. So definitely put these on your list of questions.

The chest physio should clear quite a lot of the sticky mucus from your chest (but you never get rid of all of it.) Most of us do it twice a day, I do a short morning session (maybe 15 mins) and then in the eve about 45 mins. The antibiotic I take is doxycycline (can't take azithromycin for other reasons.) I take one doxy a day, ie 100mg. If you're taking it as a course for an infection, 6 days is no good, you need 14. As others have said, ask the consultant to write clear instructions to your gp.

Another thing you'll need is, what to do in case of a flare-up. Not only what drugs to take, but who to contact. Your consultant probably has a specialist bronchiectasis nurse - ask for his/her email & mobile phone no. so you have a direct route to specialist advice when needed. The nurse who helps me at such times is fantastic, and she can contact the consultant direct if needed, or at least a registrar. My gp is lovely but, like most, he's not well informed about bronchiectasis.

Usually if your asthma is quite severe your consultant will suggest a course of prednisone whenever you have a bronch flare-up. This is cos asthma is so inflammatory, it can stop the antibiotics from penetrating the bacteria. Try and limit prednisone to when you really need it, it has long-term side effects as I'm sure you know.

Also, keep a few sputum pots & microbiology forms at home. I live close to the hospital so my husband drops these off at the path lab, not sure what others do.

Not many bronchs benefit from carbocisteine (only about one-third, so my consultant tells me) but it might work for you. I have to nebulise 7% saline in order to thin the mucus. I'd much rather take carbocisteine but it just doesn't help.

I hope I'm not too late with my thoughts. Good luck for tomorrow & let us know how you get on! Your consultant will write to your gp - remember to ask for a copy of that letter to be sent to you also

[Ruby1949 in reply to Hidden]

Thank you Hanne62,

I have two sheets of paper full of questions now!

The consultant gave instructions for my GP to give me 6 days doxycycline.

I’m hoping that means I have mild Asthma and mild Bronchiectasis.

I have also looked up bronchiectasis specialists in my area. If I feel she isn’t knowledgeable enough I will ask for a referral to another hospital.

I will be back on letting all you lovely people how I got on. 😊

[Hidden in reply to Ruby1949]

She obviously hasn’t read the British Thoracic Society guidelines to bronch management if she gave you 6 days. But fingers crossed the reason is you’re mild, as you say. If you decide you need a different consultant just let us know the rough area you live in and I’m sure one of us will pm you with a name 😉