Feeling alone and down

[Philiwillow]

Hi all, I was finally referred to a respiratory doctor 3 years ago after constant chest infections. I am asthmatic so was used to every little thing going straight to my chest...but I was at the end of my tether with the infections and cough. Anyway my specialist said he could see the “infection” on CT scans and xrays and tried different blasts of antibiotics to try to get rid of it. He also put me on azithromycin 3 times a week but nothing was truly working. Anyway, he retired and I started seeing a new consultant in August who straight away told me I have bronchiectasis - I’d never even been told before!!! I had a bronchoscopy straight away ( obviously saw lots of muck but nothing terrible) and since then I’ve been in the cycle of infections and antibiotics from the gp. The last time I saw my consultant (jan) he gave me a new inhaler (spiriva) and put me on doxycycline twice a week to try to prevent infections. The thing is, I can go no longer than a week without an infection. It’s then back to the gp for more antibiotics. It’s wearing me out (I’m v tired) and is making me worry about work. Work have been great but I’m a teacher and I can’t have time off every week to go to the gp! I’m feeling very down and alone about it all now. I’m only 33 and am at my wits end that I have constant, constant infections. I’m getting married in August so money is particularly tight but my partner now thinks we should go private. The thing is, even just the initial consultation will cost £250 and that’s not including any treatment! Anyway I’m so glad I’ve found this group and would love to hear any advice and just start to feel that I’m not alone! Thanks for reading if you’ve taken the time - I know it’s a long post!!

[Mooka]

Sorry to hear you are having such an awful time. Are you taking sputum samples to your gp? It could be that your infection is resistant to the antibiotics you are taking. Your gp should give you some rescue antibiotics to take at the first sign of an infection (after taking in a sputum sample). This means you can manage it more yourself. You should also have been sent to a respiratory physio to learn how to clear your lungs. If your consultant isn’t a Bronchiectasis specialist you could ask your gp to refer you to one which is a better option than paying. Good luck I hope you start to improve soon. X

[Hidden]

Sorry you're having a tough time, this disease can be like that but there are good times too.

If you see a consultant privately, do make sure it is a bronchiectasis specialist and ask them to refer you back into the NHS for treatment.

[Guy_Incognito]

Hi there, sorry to hear you're down. I've been there and know what it's like. I was diagnosed in my late 20s and it got worse in my 30s. I went private for a while to try and improve things as I had insurance from work. I eventually stayed with the NHS as I think long term conditions are best managed there, and private prescriptions can be expensive. I know its hard but I'm sure you'll turn the corner soon. Some tips that may help: Rinse your nostrils several times a day with sterimar (best to buy 6 packs on ebay to save money), which I find helps me reduce the risk of catching a cold, take echinacea, listen to your body and rest when you need to, wash your hands all the time (or use handgel) and learn to clear your chest

[Philiwillow]

Thank you for your replies and tips. I got an emergency appointment with my consultant yesterday and they told me they found avium bacteria in my sputum again (atypical tuberculosis or MAC disease). This has been found once before, but they were reluctant to treat me for it unless I was seen to have it again. They think they reason I have a constant infection that’s not responding is because of this MAC infection. So I started treatment for the MAC disease today. 3 different antibiotics taken 3 times a week for a long time (12 months from when I’m clear of MAC). I felt pretty weird today after my first day of treatment but I guess it’s going to be a lot for my body to get used to. I am feeling positive that it’s not just my bronchiectasis though. Have any of you ever had treatment for MAC? Many thanks and stay well x