Bronchiectasis, Asthma, para oesophageal lymph node enlarges and Gord

[Laurapeil]

Hi,I was diagnosed with mild asthma in 20 14, but rarely needed blue inhaler. During the pandemic I fell ill with a tubo ovarian abcess which I was hospitalised for week . This made me quite ill for a few months and as a result I didn't exercise as much and gained some weight. After everything went back to normal I started exercising again but developed plantar faciitis which even prevented me walking too much so yet again gained more weight I caught covid in April 2022 but it wasn't that bad just like a cold really but noticed after that I was becoming more breathless do had my asthma drugs changed from clenil to fostair dpi. I went to slovenia in Oct 22 and got a nasty chest infection, on my return I saw GP and was given anti biotics and steroids. Since then I have had repeated chest infections with same treatment then from around Aug 23 I began having asthma attacks that took me to A and E 11 times I had fostair changed to fostair 200/6 dpi and then changed again to normal fostair 200/6 cfc spray inhaler, then got montelukast, steroid nasal spray, fexofenadine,lansoprazole, and spiriva inhaler ( this has now changed to atrovent). I was sent for hrct scan which revealed LLL bronchiectasis, mucus plugging and trapped air, and a para oesophageal lymph node that increased in size. I have had gord so bad that I now need acidex. I have now also got Carbocisteine for the mucus. I was diagnosed in December 23 and I am still waiting to see a resp specialist, a gastroenterology, and get chest physio . I have lost count how many courses of antibiotics and steroids I've had. This latest infection I had amoxicilin for 7 days, 7 days doxycycline, 14 days co amoxiclav, 14 days doxycycline and now on another 14 days co amoxiclav. The steroids were weaned down from 8 by 1 tablet every 5 days and I have now come off them. I really don't want any more as they cause even more weight gain. After the Xmas break I told my employer about the diagnosis and the occupational health doctor signed me off work for 3 months I feel this is taking my life away I had been doing martial arts for 30 years and can't do that any more at 54 years old I was expecting a fair few more years.

My breathing is a lot better with mucous thinning drugs but the weight gain has made the stage 3 osteoarthritis in my knees worse.

Also recently I have been having wrist pain, elbow pain and lower back pain.

Does it usually take this long to see a specialist?

[Patk1]

I'd ring hospital booking line, or consultants secretary to say u will take a cancelled appointment at short notice.Meanwhile on aluk website look at lung clearance techniques - acb with huffing technique + use it cpl times day to get any mucous up to reduce infections.this us the most important step of self care with bronchiectasis. You need to try to avoid viruses,as they often result in an exacerbation which causes more irreparable damage to lungs.at 1st sign of infection,you will need to start antibiotics,for minimum of 2 wks.once u begin self care,things will improve x

[Laurapeil in reply to Patk1]

Yes I have been looking at clearance techniques. I am quite worried about when I go back to work as I work in an international boarding school with 57 nationalities. There are always viruses so don't know how I can avoid them. Yes GP said 2 weeks antibiotics at first sign of infection but I seem to have been on antibiotics without much break for a year I am exhausted.

[Patk1 in reply to Laurapeil]

I'm using vicks first defence nose spray & coldzyme throat spray whn around people.Could u have cpl windows open,even on trickle vent to improve ventilation.perhaps also use an air purifier with a, hepa filter which helps remove viral particles frm air x

[Laurapeil in reply to Patk1]

Yes I have an air filter for my office but couldn't really carry it around to every room I am in. I don't go back until 15th April so could try opening windows and hope that won't cause pollen to set off hayfever. The main part of my job is in office shared with 3 others. We have had no heating in there for a while waiting for mod to repair so the cold air gasnt helped. But when the heating is working its hot air which is equally not good. The rest of my job is outside teaching Army cadets but on Fridays I am in a boarding house until 2230hrs and there's always a bug going around.

[Patk1 in reply to Laurapeil]

All u can do is protect yrself, as best u can.its no wonder Yr tired,being ill so often.i take antihistamines too,all-year round.yr work conditions don't sound great.vicks first defence+ coldyme help to neutralise viruses so may be worth considering or something similarx

[Laurapeil in reply to Patk1]

Yes I will try them, I do take antihistamines all year round too fexofenafine.

[Homely2 Administrator]

My hospitals waiting times are published online, so it is worth checking to see if you can find yours and also I can check the waiting times for my other local hospitals.

My asthma went out of control in December 2022, lots of steroids and a and e visits. So I emailed the hospital, my asthma nurse told me what to say, and was given a short notice appointment.

If you want to chat through your asthma give the asthma UK helpline a ring on 0300 2225800. The asthma nurses are very helpful.

[Laurapeil in reply to Homely2]

Thank you

[ReedB]

What a rough time and yes it can take a few months to see a specialist unfortunately. That's positive that you've managed to get off the prednisolone and I can understand not wanting anymore!Just a thought but with the worsening of asthma symptoms etc and the wrist, elbow and low back pain have you considered the change in your hormones?

[Laurapeil in reply to ReedB]

I am on HRT and have been since Aug 22

[fraid]

Jeez! What a lot to go through! 😱 Hope you catch a break soon, ailments wise I mean. I demanded an urgent referral for something else, through book and choose as year wait with nhs. He was useless but at least I found out sooner. Maybe worth a try if they still do that? Good luck. 🤞

[Laurapeil in reply to fraid]

Thanks I am just so sick and tired literally

[Gwalltarian]

I found amoxicillin ineffective for chest infections, Doxycycline was unsuitable - I walk outside daily and avoiding sunshine was a problem and it caused asthmatic symptoms. I was then given Clarithromycin for chest infections which I found very effective.

[Venta55]

it shouldn’t take this long for a referral given how many antibiotics you’ve had to have is push for it

[Laurapeil in reply to Venta55]

My Gp has sent 3 letters

[MikeWhite]

sounds a similar asthma story to mine

Given your hosp admission & frequent steroid & antibiotic use you should be a priority

I spent 5 days as an inpatient at the Brompton being assessed & was put on Xolair & permanently on Azithromycin 3 times a week with an emergency pack of doxy & pred although normally need Clarithromycin too

I'm fortunate that my work / employer allowed me to work from home so now I only have a few weeks off per year rather than months

Wishing you all the best

Mike

[Laurapeil in reply to MikeWhite]

Omg !! Yours sounds terrible. Yes I am hoping when I go back that part of my job can be from home

[Patk1]

On aluk website,read up on lung clearance techniques - acb with huffing technique is gd.do yes twice a day,til see lung physio.it shifts mucous & plugs & will reduce infections.steer clear of or protect yrself frm viral infections which often precede lung infections.lung clearance is the backbone of self care with bronchiectasis x

[Tiggertheterrier]

I am unfortunate enough to live in North Wales. Our waiting lists are a total disgrace, referral letters mysteriously get lost in the system, you leave phone messages which never get passed on. I am still waiting to see my chest consultant again ( he stupidly discharged me in March 2022.) My Gp referred me back on 31 August 2022, due to umpteen mix--ups I am still waiting in February 2024. Never been seen by Respiratory Physio either. Have taught myself umpteen useful things online.

[Laurapeil in reply to Tiggertheterrier]

I am having to teach myself too. It's terrible