new consultant

[Julie14]

I had a call from my new lung consultant & he said he was unhappy with the treatment I have received it’s been 2 years since I had a face to face check up even though I have had may hospital admissions with my Bronchiectasis. I have a face to face with him next week but im worried as he said he will get me fit again & he is saying it’s mild Bronchiectasis not Chronic which it has been recorded as chronic for years. He said I'm to young I'm 56 in November & it should not be this bad. He then said he would be giving me a nebuliser to have at home. Im worried he is going to downplay my condition but yet confused he’s giving me a nebuliser. I know my own body & everyday is a struggle especially with feeling breathless & tired.

[sassy59]

Hi Julie, make sure your new lung consultant fully understands how you feel and maybe he’ll be a good person to have onside. Let us know how things go. Xxx😘

[Hidden]

Hi Julie. Having read your post thoroughly I could interpret what he said as that with the proper treatment and management you should not be feeling as bad as you do because your bronch is mild. That so far your management has not been good and so you have been having too many exacerbations. .That makes sense. With nebulised antibiotics at home he may be considering that you can keep down the bugs which keep putting you in hospital. I had this kind of treatment for years and it works. Also you need to be fastidiously emptying your lungs of the fluid in which the bugs like to grow.I think that you need a good talk to him. A proper management plan could help you a lot.

[Troilus]

Hi Julie. The consultant will have read through your notes before calling you. Also, no doubt you can have a good chat when you see him and you will be able to discuss any proposed treatment options. He may be right, maybe he can improve things for you. Fingers crossed.

As a side note Julie chronic does not mean severe - it is to do with time - it means long term/permanent. So something can be chronic and mild

[Lol1944]

A nebuliser at home really can be a blessing. I may only use mine maybe 4/5 tines a year when I feel the need, say approx. 30 days a year. It is those occasions that keep me away from the local hospital. Generally speaking gps dislike the idea but do I care. Very very prompt attention to a flare up of already damaged lungs is a priority for me. After 20 years I have learnt what is best for me.

[Alberta56]

Fingers crossed that this consultant will give you a better quality of life. Good luck xxx

[Mooka]

I would look at this change as a positive. Being on a nebuliser is a small price to pay to avoid all those infections. Hopefully he will discuss giving you iv antibiotics first to kill off any bugs that may be lurking. Good luck let us know how you get on.

[watergazer]

fingers crossed for a beneficial consultation for you. X

[Straddie]

I have found a nebuliser so helpful and now wouldn’t be without it. It really does loosen the phlegm and open the airwaves. I have used sambutomol first (to open the airwaves) and muco clear, a hypotonic saline solution afterwards. The salt loosens the phlegm and makes it easier to cough up. But I did find that I used the latter too often and gave myself a mini bronchospasm a few times. So you need to be guided by your own reaction to it.

It’s important to be positive. How wonderful to have a new consultant who cares. If he/she can cut down the number of exacerbations what’s not to like? It doesn’t matter if you are mild or severe, it’s how you feel and whether you have any faith in your new specialist. Tell him/her about why you are worried about being “downgraded”. That’s like being worried that you have been cured! We all know there isn’t a cure but we can learn to manage our illness better. Sounds like a great opportunity.

[Nottobad123 in reply to Straddie]

Can you say what kind/make you have.I bought one on line, but it's so small and the mask is the size for babies.

Am hoping it will help me with my now difficult breathing.

[Straddie]

mine is a Phillips Respironics. It was about £50. The NHS supplied mine for free, but I bought another so I could keep one at my daughter’s.

[Nottobad123 in reply to Straddie]

Sorry I didn't know you had replied to me as you just posted on your own post, so it didn't show up on my notifications. Thanks for the information, much appreciated 👍

[jhorsf]

You are lucky , he is being proactive, that will help keep lungs clear of mucus and infection. I have bronchiectasis also a few years ,no consultant one saw me in hospital when I had pneumonia,during covid. Been in a few times , the physio they asked to ring me told consultant I was fine apparently. I give up with them now.

[Patk1]

Sometimes a new approach IS what's needed.i hope all goes well whn u see him.do u use lung clearance x

[Julie14 in reply to Patk1]

I try but I struggle x

[peege in reply to Julie14]

Perhaps the nebuliser will really help loosen the 'stuff' Julie. I do so hope so ××

[Patk1]

Yes,it's not easy but is the single most important thing to do,at least 2x a day.ru on carbocysteine to thin it x

[tomc]

Hi. You have made a very important statement in your post "I know my own body"

I have said the same to clinicians very similar to "I live in this body I feel the pain and anxiety every day" I have had could be, maybe It can`t be, OH IT IS no its's not but it turns out Severe COPD

So fight for what you need to get a correct diagnosis and treatment.