Bronchiectasis & Tracheobronchomalacia Exacerbations

[Sued1958]

I am writing this from my hospital bed actually fuming over the decision of a younger doctor to take me off IV antibiotics and put me back onto oral. Luckily a senior doctor over ruled that decision and I am still on IV meds but for how long 😩😩

I was first admitted at the beginning of March with fever sob etc and was told by a consultant that I would stay on IV abs for 10 days but within 5 days I was told by a different consultant that as my bloods etc were improving I would be sent home on 11 day course of oral coamoxyclav.

Within a week the signs of infection were increasing but I plodded on with the prescribed meds but less than 4 days after finishing the meds I was back at my respiratory nurse and prescribed another 7 days of clarithromycin. That was last Wednesday but by Friday my Sats had dropped to the lowest I have ever recorded at 40 on slight exertion. Then my daughter came home and struggled to rouse me from a nap ! so here I am back in hospital back on IV as this post started and now facing a fight to stay on the IV for at least the 10 days so hopefully I can stay out of this horrid place.

I have also been referred to the Sleep & Vent clinic for CPAP trial as the respiratory specialist is hoping this will open my airways and allow for better mucus clearance caused by the bronchiectasis. But even though my nurse has been chasing the referral I have still had no news.

I know it's all money & the NHS doesn't have enough but if I can be given the tools to fight these awful diseases surely it would be cheaper than these hospital stays.

Am I within my rights to insist on staying on the IV antibiotics ??

Sorry for the long post but I am at my wits end at the moment. With sats regularly falling below 80 I know I am doing further harm to my body.

[Hidden]

These young doctors are the bane of our lives at times! I don't think you can absolutely insist on any treatment, but I suggest you dig your heels in & say your preference is for IVs (especially in light of your recent experience.) Also, a good tip is to say you'd like your own consultant to explain the changed treatment plan to you. That's perfectly reasonable & I can't imagine any decent consultant refusing to come & see you. Maybe the hospital has a home-IV service so you don't have to stay in?

[Sued1958 in reply to Hidden]

Thank you for your reply , if I have to fight I will definitely go down the lines you have suggested.. Our hospital did have the home -IV service but the funding has been cut 👍🏻

[Hidden in reply to Sued1958]

How short-sighted, when it costs so much more to keep someone in hospital. The British Thoracic Society's guidelines for IV antibiotic treatment of exacerbations in bronch specifically state 10-14 days, I think. I'll look it up. I wonder if there is any reason why the guidelines shouldn't apply to you.

[Sued1958 in reply to Hidden]

Thank you and I agree the NHS management teams are short sighted in their funding

[Hidden in reply to Sued1958]

Here's the guidelines brit-thoracic.org.uk/docume... the antibiotic table I was thinking of is in Appendix 2 on page 57. These were written by the foremost clinicians in the field. You'll see that where IVs are concerned, 14 days is given as the usual course. However the Guidelines are dated 2010 (they're being updated this year) & I've been told that, following further research, the recommendation is now 10-14 days, depending on how quickly your bug responds.

[Sued1958 in reply to Hidden]

Thank you very interesting and informative information

[Carnival567 in reply to Sued1958]

There is a 2015 version online try pcrs-org.uk which gives a link. Hope you are soon getting the help you need, although why we should fight for it I do not know. I had the same sort of experience and refused to talk to anyone but my own consultant. They sent for him and he was there in 10 minutes and got things sorted in five. I agree with the suggestion that you should ask to speak to your own consultant before any action is taken. Blessings and health to you.

[Hidden in reply to Carnival567]

Hi Carnival. I'd be very interested to see the updated bronch guidelines but can't find them on that website. Would you mind having a look & see if you can give me a link? Many thanks!

[Carnival567 in reply to Hidden]

Try brit.thoracic.org.uk that should give you a start to guidelines. Good luck

[Carnival567 in reply to Carnival567]

You could also try sppneumologia.pt

This seems to cover it , in Englisheven though Portuguese site

Chapter 14 Antibiotic strategies in adults with bronchiectasis

[Carnival567 in reply to Hidden]

Thank you @ Hanne62 , just what I had!

[Hidden]

Sorry to read about time having ... I would ask what clinical desion was there for taking me of IV Antibiotics.

If the was none and all blood test liver kidney was OK I would fight to stay on them.

[Sued1958 in reply to Hidden]

Thank you for your reply any suggestions I can use help !

[Billiejean_2]

I also have Bronchiectasis and if I have to go in for IVs it's always for a minimum of 14 days. A week's IVs are just not enough for most people with Bronchiectasis.

[Sued1958]

They are saying 10 days but I think I will ask for my respiratory consultant to come to see me 😷

[knitter]

I have asthma / COPD, and the last time I was in hospital with the symptoms of sepsis, I had a similar experience with a junior doctor.

Another patient insisted on treatment and refused to be discharged.

[sassy59]

You have had some great replies Sued so l just want to wish you well and hope things improve soon. You know your own body so l hope doctors listen and do what's best for you.

Take care xxxxxx

[Hidden]

I would ask what training in bronchiectasis this doctor has had. I act as a patient for all levels of exams for doctors. Even those attempting to become consultants are woefully ignorant about it and young doctors struggle to recognise it. Most often confusing it with COPD for which the treatment is very different. When I have had IV it has always meant at least 14 days and twice it was 4 weeks with two different drugs. Check that your consultant is a bronchiectasis specialist and not simply a general lung consultant with an 'interest' in bronch. Good luck. I do hope that you get answers and sufficient treatment. The stress of dealing with these people is not going to help your condition.

[dinnyrayner]

I KNOW WHERE YOU ARE WITH THIS PROBLEM XX. CPAP OR BIPAP (WHICH I HAVE ) ARE GREAT FOR KEEPING THE AIRWAYS OPEN , ESPECIALLY WHEN YOU ARE ASLEEP AS YOUR BREATHING GETS SHALLOWER , AND FIGHT TO STAY ON IV ABS AS HARD AS YOU CAN . I ALSO HAVE BRONCHIECTASIS AND HAVE RECENTLY HAD A VIRUS LEAVING ME WITH POST VIRAL INFECTION , I AM STILL NOT RIGHT , I HAD TO TAKE SPUTUM SAMPLE TO DOC TO SEND FOR ANALYSIS 2 WEEKS AGO AND JUST DOING THAT GETTING A SCRIP AND 2 ESSENTIAL SHOPPING ITEMS MADE MY SATS DROP TO 62 LOWEST I HAVE EVER BEEN , TAKE CARE XXXXX

[tomc]

I had a worrying experience in hospital.

Admitted with the same old symptoms of Bronchiectasis flare up to find out I had onset pneumonia was put on IVs Co-Amoxiclav and Clarithromycin, had ct and told , you don`t have Bronchiectasis and was discharged 5 days later.

On first appointment with consultant the lobotomist was there wanting blood for the Bronchiectasis consultant, of course, I said I do not have Bronc according to the CT and hospital Junior doctor who discharged me.

The consultant jumped up and said "Oh yes you do and she showed me the scan.

I also asked about the severe breathlessness I was experiencing and told by the hospital chap, We don`t know, It could be "" COPD, Emphysema, Asthma,OR, Your ground glass opacity... on asking the consultant she said oh yes but it`s very mild... It should look good after 5 days of oxygen, IVs, And orals ABs and two weeks later seeing you.

Point is, Junior doctors and the local coalman should not be left to make their own minds up especially with Lung issues which most good doctors will say from the outset " we don`t know, It is not a patterned disease and everyone is different "

Keep taking the pills & inhalers...

[tomc]

OH, Forgot to say, I was diagnosed with, Asthma and scarred lung in year 2000

Diagnosis changed to Bronchiectasis by Hospital senior consultant 2008 who said " I dont think you ever had Asthma, it`s Bronchiectasis

Diagnosed COPD/ Emphysema and ground glass opacity right middle lobe and upper cap + asthma 2013

Now... I don`t think you have any and if you do " It`s very mild " yeh!! try living 24/7 with the problem.

Now a specialist lung team are reviewing my case,,, HELP ,,, I could wind up with BERRY BERRY FEVER!!

[Beth1949]

I feel for you. I live in the states and it seems that the insurance company and Medicare (I'm 67 and retired) don't like paying out for preventive meds. They would rather pay for a hospital stay!! No wonder the government retirement insurance program is so far in debt!

Take care, Beth