New diagnosis

[Fennella02]

I’ve just stumbled across a new diagnosis of Bronchiectasis on my Patient Access record. I have UCTD /lupus and bronchiolitis already. Will anything need to change for me ? I take Trelegy and immunosuppression (Mycophenolate and pred) and keep as active as I can.

Feeling a bit scared of this new label xx

[Bkin]

I'd say it depends on your symptoms, if you have increased mucus that you need to cough up for instance you will probably benefit from taking carbocisteine, and always drink plenty of water.

If you have not noticed any change in your symptoms just drink plenty of water any way.

If your mucus production gets severe and you have repeated chest infections you really need referral back to specialising respiratory consultant.

Your emergency pack may need adjustment. regarding antibiotics type and duration. If you get a chest infection best if you can provide a sputum sample for testing before starting antibiotics. Ask your GP surgery for a sputum sample pot to have at home.

Nothing to be scared of, remember we are not the illness we just live with it.

I always think attaching to the label is not a good idea psychologically.

Good to keep active

Best wishes

[Fennella02 in reply to Bkin]

That’s really helpful, thank you. I have lots of symptoms that led to the new ct and subsequent diagnosis. I also think I may have some chronic low level infection. I don’t have a rescue pack and my surgery don’t advocate sputum samples, they tend to dose promptly with antibiotics. I took a purulent sample in last year and was told by the receptionist that the nurses find it the very worst job that they have to do 🤮.

I’m on the go and outside as much as I can be but have noticed that my O2 levels and peak flow have dropped in recent weeks.

Your reply is very reassuring, thanks so much c

[Bkin in reply to Fennella02]

I would say request referral to a respiratory consultant who I am sure will have something to say to your surgery about a rescue pack and sputum samples. Once you get to have telephone contact with respiratory consultant or team at the hospital you can discuss these things.

Chest infections should not go untreated as they can cause more serious complications. They need to be treated soon as.

For further information contact the BLF helpline.

blf.org.uk/support-for-you

Best wishes

[Fennella02 in reply to Bkin]

Thank you, you’re a star x

[wheezyof in reply to Fennella02]

I have bronchiolitis obliterans and bronchiectasis.

I've tried several times to get mucus samples tested. Each time I was treated as though I'd committed a crime.

In hospital in August I asked a doctor why they had not tested to find out what 'bug' I was suffering from. He explained there protocol :

Blood samples are taken, infection markers checked, a wide based antibiotic given, very high dose followed by a high dose (my infection was obvious and very bad, Oxygen at 76% and struggling to breathe)

Frequent blood samples are taken at intervals and the infection markers checked. As the markers return to normal they know it's working.

I also ashed "As we may have more than one infection at a a time, how do you know the antibiotics are killing the bugs in my lungs, not the bugs elsewhere. My lungs are a mess and I can't afford to hang about"

He just told me they would know.

It took 16 days in hospital and a long course of antibiotics at home to fix the infection.

I would still prefer them to start with a broad spectrum antibiotic but do the sputum test so they can be a bit more specific. However, they got me well so their way works.

[tomc]

Last year , early this year, I was never out of hospital with infections so much so they were sick of the sight of me, Literally!

The hospital told me don't hang about if you think you have an infection use your rescue pack and then we`ll see"

Meantime GP says DON'T use your steroids, Hospital says DO use your steroids

Under COVID, I phoned doctor recently and said my sputum was slightly yellow again, He was a bit short with me and told me to go to hospital A&E...... ?

I understand that every part of the NHS is running flat out, so I didn't take the hump as he must be stressed out and he is normally a very patient and understanding man.

Really, if you think you may have an infection use your rescue pack , If you don't have a rescue pack ( home antibiotics ) ask for one!

Never dilly or dally if you are feeling Badly, take the meds and then see your doctor, or consultant.. if you haven`t got a consultant GET ONE.

As has been said on here before, IT'S your body and you know it better than anybody, doctors included....