So it continues 😢 input please....

[Jen3675]

Hey folks, bear with me, for those that have not come across my story

It started with a vape, woke up couldn’t breathe, felt like my lungs were filled with fluid, not sick, just hacking up a lung. Got marginally better 5 days in then 100 x worse....

7 days doxycycline, didn’t help.

Steroid inhalers. Qvar and ventolin, helped slightly.

Steroid tablets, 5 days, still hacking up a lung and crackling, breathless.

Steroid inhalers doubled

Still coughing, can’t breathe, crackling on deep breathe.

3 x clear chest X-rays

1 x clear HRCT scan (possibly mild bronchiastasis, waiting for confirmation)

Started 12 weeks ago.

Consultant opinion, caused but vaping but now resolving, fine crackles disappeared after a few breathes so likely residue phlegm. Not concerned. Switched to fostair and a mucus drug. Just over a week ago.

Bloods done last Monday as anaemic, still mildly anaemic but also raised wcc and raised neutrophils, tried calling gp all week to discuss and cough as significantly worse and feel like I can only get half a breath in. Not spoken to anyone.

Figured it’s probably another infection, due to bloods, increased phlegm, increased cough and not being able to take a full breath. Started amoxicillin (issued by gp as I was worried about travelling, to be used just in case) on Friday morning. Continued to call GP but not had a call back.

Today....cough has dramatically improved, still can’t get a full breath in, feels like my lungs won’t expand fully and sure I can feel my lung rubbing 🤦🏻‍♀️ back and ribs are sore. But the cough and breathlessness are definitely better.

Sat in Dover waiting to head out to Portugal, not really sure what to do next?

Not really sure if it was an unresolved infection all along? (I was very concerned about fibrosis due to the crackling on deep breathes and the fact I wasn’t getting better). No crackles now as I can’t get a deep breath in. But could it have been an infection that the doxycycline didn’t fix? I have been sick for 13 weeks, the cough is the best it has been, I don’t feel awful right now but I can’t get a breath in and the grating is a worry.

I am 4 hours from my own GP and don’t feel confident enough to travel but also not sick enough to go to a&e. I don’t really know what’s going on or what I should do now?

Thoughts please.

[beech]

It does sound like you could have a continued infection, or it could also just be that you’re taking a while to heal from the infection - but you’re feeling concerned that you’re not feeling well enough to travel.

So really a GP consult is needed to check it out To be on the safe side.

[Hidden]

Mild bronchiectasis is mild bronchiectasis, and if that’s present, your ct isn’t clear. You can lead a full and active life with ncfb (non cf bronchiectasis), but only if the condition is managed properly, which means the correct treatment for infections or exacerbations, for the correct duration. Infections in bronchiectasis need to be treated for at least 14 days each time as standard, and sputum also needs to be cultured to make sure the antibiotics are the right ones for the bacteria involved: in ncfb, people can catch environmental bacteria that are often harder to treat and not covered by the ‘usual’ antibiotics given out to much of the population when they have a chest infection. It’s entirely possible for anyone to have a chest infection lasting weeks if they’re not being given the right antibiotics, but even more so if you do have bronchiectasis.

It may be a little late in coming, now, but in all honesty, you answered your own question: you don’t feel well enough to travel. I hope you listened to that wise voice inside of you and stayed in the U.K. I would also advocate pushing for a definite answer on the ncfb. If it comes back you do have it, paraphrasing the words of one of our most indomitable members with lifelong bronch, find the nearest hospital with a respiratory consultant with special interest in bronchiectasis and demand a referral from your GP. Those is the know here would tell you that most general respiratory consultants don’t have a clue about ncfb, barely more than GPs do, which is to say next to nothing, so to get the right care you need to find a consultant that does.

[Jen3675 in reply to Hidden]

Thank you very much for your fabulous reply. The respiratory consultant thinks it might be but was seeking a further consult, I am still waiting to hear. I will chase up today.

We are permanently moving to Portugal, currently living in our van so it’s not just like we are off on a jolly. But I do want to get this fixed before we go. Just so hard to get anything done in a reasonable time frame.

Again, thank you for your reply 💕

[Patk1]

Infections cvn trigger inflamatio and can all take while to settle.its b triggered by yr vape and as lungs irritated badly,it will take time,unfortunately , to settle - who knows how long.. when breathes catching,use salbutamol to open airways.it sounds like consultants happy things improving so does sound like its a waiting game & a hard lesson in avoid irritants to airways at all costs 13wks is a relatively short time in recovery of lungs.id expect yr going to have to accept that

[Snackjack]

My response may be to late now but does sound like you need to see a doctor. I was given doxycycline for a chest infection 3 years ago and it did not work for me so my doctor gave me a different one, I think from memory it was amoxycillin that eventually worked for me. My doctor has on my notes now not to give me doxycycline. Only you can decide whether to go to Portugal or not but please do not neglect your health, you say yourself you do not feel well enough to travel! I do hope you can get the help you need and start to feel better soon. Best wishes. xx

[Jen3675 in reply to Snackjack]

Thank you for your reply 💕 I feel slightly better again this morning so I am hopeful that doxycycline just didn’t do the job. We are moving to Portugal but I know I need to be in better health first, in the mean time, we are in the camper van!

[Hidden]

Listen to Charlie_G. He has said everything that I would have. A clear HRCT scan with query mild bronchiectasis is a contradiction in terms. Bronchiectasis, however mild, would show up on a scan. It is the reading of that scan which is important and only an expert in bronch can read them properly to confirm or dismiss the bronch. Hopefully your scan will actually be clear and what you are suffering from is an unresolved infection caused by the vape. That would need a much bigger blast of antibiotics and huge efforts by yourself to get the residual mucus out of your lungs.

If you do have bronch you will need a programme of self management and correct treatment and only a bronch consultant can help you with that. GPs and general respiratory consultants have no idea.

If you don’t feel well enough to travel please don’t.

[Jen3675 in reply to Hidden]

Thank you very much for your reply. It seems the cogs of our NHS turn rather slowly.

On a positive note, I have coughed less this morning and can breathe better than I have been able to for the last 3 months. I am feeling hopeful.

I wouldn’t be considering travelling under normal circumstances but we are supposed to be moving to Portugal.

Thank you for your reply

[Patk1 in reply to Jen3675]

Great! Warm air should help.dont overdo it,rest up and let body heal.personally,I take varios supplements to hel promote healing.btw inflammation as well as infection,show as raised wbc. Keep yr puffers handy + have gd heath cover insurance.all the best

[Hidden in reply to Jen3675]

Oh a good sign that it us clearing up. I hope that you enjoy life in Portugal. Do keep in touch with us.x

[Oshgosh]

Hi,if you can’t get to speak to your GP,is there an out of hours service e you could go to ,so that you could be checked. It’s really draining. To be ill for so long.I hope you start to feel a little better soon

[Jen3675 in reply to Oshgosh]

Thank you 😊

[Thinkhealthy]

Hope you are feeling better. Have you access to the Portuguese health system ?

[Jen3675 in reply to Thinkhealthy]

Yeah we do but I am a a little nervous as my Portuguese is basic at best!

[Thinkhealthy in reply to Jen3675]

A good translation app ? In Spain we’ve found most doctors - speak fairly good English - but they do like it when we speak Spanish . I always spend time on relevant vocab before any medical appt. it boosts confidence against white coat syndrome ! Good luck x