Can I have your input please?

Posted by narelled23 @narelled23, 2 days ago

History of Bronchiestases and COPD. I have been sick for 3 of the last 4 months...and almost continually for the last 2 months. Started as cold like for couple of weeks...get better for a couple of days and then come down again. It developed into a severe sinusitis type infection. Early nasal swab and more recent sputum showed nothing sinister.
A course of Azrithromycin was followed by Amoxicillin and then 2 rounds of Amoxicillin-clavulanic acid (because of a skin infection I also had). While initially these seemed to help they didn't kill whatever is ailing me.
Just this weekend I tried the 'on call Dr' at my local clinic and he said I needed to switch antibiotics and put me on Cefuroxine, gave me a referral for chest xray for today to rule out Pneumonia, and a referral for ent scope of my throat area...because one of the symptoms I have been experiencing is the feeling of my throat closing and stopping my breathing.
I woke this morning with laryngitis type symptoms and shortness of breath on walking...!!
The Xray is meant to be being read as urgent today, in case Pneumonia is developing - the on call Dr should get report today and I have asked him to contact me when he gets it.
The pulmonary rehabilitation program I have been doing had suggested that nebulising hypertonic may be causing some of my excess mucus problems and so I did cut down to 2 or 3 times a week for a while there, but back to once a day now. Doctors are keeping an ear on.my chest and no reports of chest noises.
Can anyone give me some direction please? Am feeling a bit desperate.

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maryjanechilds | @maryjanechilds | 2 days ago

Just one suggestion-maybe a steroid pack (prednisone) to get the inflammation under control is in order.

Sue, Volunteer Mentor | @sueinmn | 2 days ago

@narelled23
Let's start with your (sudden?) shortness of breath - it is an uncommon and potentially serious side effect of cefuroxine - call the doctor or clinic now.

The fact that "...Early nasal swab and more recent sputum showed nothing sinister..." may mean a full culture needs to be grown out, even if the first test showed "No AFB" but most labs toss the sample at that point and go no farther with the test.

Then I have a question - who has been treating this lingering illness? If it is not your pulmonologist, please contact them promptly. If the pulmonologist is at a loss as to next steps, it may be time for a referral to an Infectious Disease specialist who is familiar with Bronchiectasis, NTM/MAC, Pseudomonas and the other "nasties" that plague us.

Finally, if the x-ray shows evidence of inflammation, @maryjanechilds may be on the right track. Although not typically used with bronchiectasis, sometimes a steroid can calm an ongoing infection enough to let tje lungs heal.

Are you seeing a pulmonologist at one of the Bronchiectasis specialty centers? If not, this might be the time to switch.

narelled23 | @narelled23 | 2 days ago

In reply to @maryjanechilds "Just one suggestion-maybe a steroid pack (prednisone) to get the inflammation under control is in order." + (show)

@maryjanechilds
Sorry, forgot to add that through AI research last Friday I got approval from my GP to commence a 5 day course of Prednisolone, 2 a day for 3 days and 1 a day for next 2 days ... due to finish tomorrow ...however my sleep has been affected by this and I am wondering if that is having a negative effect on my getting better.

narelled23 | @narelled23 | 2 days ago

In reply to @sueinmn "@narelled23 Let's start with your (sudden?) shortness of breath - it is an uncommon and potentially..." + (show)

@sueinmn

Thank you, Sue.

I did speak to the on call Dr today to learn that my chest xray was clear. I mentioned that I woke this morning with laryngitis type symptoms and on a walk was seriously out of breath. He didn't comment on that. However he gave me a script for a blood test to check for infection if I felt I needed it.

I have been seeing my normal GP or PCP I think you call them. I saw a private pulmonary specialist 4 times earlier in the year...however I was not impressed with him. I may try to find someone else I could feel more confident in. I don't think the recent sputum was tested for NTMs.

narelled23 | @narelled23 | 2 days ago

In reply to @sueinmn "@narelled23 Let's start with your (sudden?) shortness of breath - it is an uncommon and potentially..." + (show)

@sueinmn
May I ask if what I explained sounds like it could be 'NTM/MAC, Pseudomonas and the other "nasties" that plague us.'

I had congratulated myself that I had avoided those problems.

scoop | @scoop | 2 days ago

I can only comment on the bronchiectasis part since that's what I live with.

I've never heard of nebulizing hypertonic saline leading to excess mucus, but rather just the opposite. The nebbing rehydrates the sticky dry phlegm so we can cough it out. When we are ill, it's often advised to do more clearance than less.

Perhaps resubmit sputum culture?

Are you controlling any silent or pronounced reflux you might have? By sleeping upright on a wedge and not eating or drinking 3-4 hours before sleep? Taking an alginate product before sleep I find helpful.

I hope you feel better soon.

maryjanechilds | @maryjanechilds | 2 days ago

In reply to @narelled23 "@maryjanechilds Sorry, forgot to add that through AI research last Friday I got approval from my..." + (show)

@narelled23 insomnia is always a problem for me with prednisone but getting the inflammation under control will allow you to get better sooner.

blm1007blm1007 | @blm1007blm1007 | 1 day ago

Hello
So sorry you are having such a hard time in so many ways.
I know you are not here in the U.S. When I went to NJH in Denver and then to Tyler in Texas to see two highly qualified doctors in Bronchiectasis they always did a battery of tests to rule out all possible other problems that can be related to causing and being in conjunction with Bronchiectasis. If you would like to know the typical tests they do when patients go to them for Bronchiectasis, I believe they show on one of their website areas the different tests they do.
I wonder if you have something they have not tested you for that might be causing all you are going through.
If you feel O.K. when nebulizing and after nebulizing do what you feel is best for you and seems to help. My two cents.
I have a neighbor who's husband had Sarcoidosis and Bronchiectasis together. She moved into the neighborhood a couple of years ago just about the time I was diagnosed with Bronchiectais and was shocked to find someone who knew about Bronchiectasis. So few, until recently, had/have ever heard of it.
Do I remember correctly, are you in Australia?
This is not fun for you at all and so frustrating I would imagine.
Barbara

narelled23 | @narelled23 | 1 day ago

In reply to @scoop "I can only comment on the bronchiectasis part since that's what I live with. I've never..." + (show)

@scoop
Thank you Scoop.

It has been suggested to me by several (pulmonary and physio) that because I cough so much during nebbing that I may be creating a vicious circle causing more inflammation and irritation which causes more urge to cough and more mucus. I did find that the mucus volume reduced after dropping to 2-3 nebs a week.

However it was just after this that I developed the infection!! I am now back to once daily nebbing. Fortunately sputum usually white/clear...despite a lot of green/yellow when I had the sinus infection mainly from sinuses.

I haven't been able to submit further sputums because I am on antibiotics...but if this continues after this round I will.

I do have reflux and have been doing what I can...probably should have another scope done as it is some years since the last.