Bronchiectasis/Brittle Asthma

[Blue58]

I am new to this forum and will give some background. I am a chronic brittle asthmatic with a colony of psuedomonas in my lung and I have steadily deteriorating bronchiectasis. We moved house to a different area and it has been a struggle to get a proper care plan together at my new hospital. To be fair to my new hospital I have been admitted every 3 months for IV antibiotic clean up as I am unable to take oral antibiotics. They have also tried tobramycin nebulizer but these have had to be stopped due to severe tightening of the chest and worsening of asthma symptoms. The main problem I am experiencing when admitted with chest infection is premature discharge before the infection is eradicated. Is there anyone out there having the same problems and what can be done about it. I'm constantly being sent home with the same infection as I've been admitted with. This leads to a number of emergency admissions within the 3 month period for further iv antibiotic treatment and a living hell at home in the meantime with constant breathlessness.

[cofdrop-UK]

A very warm welcome to you Blue. This must be such a difficult problem for you. I can empathise somewhat as I have had brochiectasis since babyhood and later in life asthma and am also intolerant to so many (most) of the oral abs and many other drugs. I do have about 3 I can use but only 2 of these are suitable for gram negative bacteria. I don’t tolerate Ceftazadine even by IV. Like you I have tried nebuised abs, both Colomycin and Tobramycin, both made me incredibly breathless and my GP sent me to A&E with the former.

I have had IVs both in hospital and done them myself at home. It is a shame they won’t allow you to do them at home, as it is so much better on every level.

Our consultants no longer give IVs as an ‘insurance’ because of resistance but I can see you have so few options.

BTW I also have hiatus hernia and reflux. I also have IBS, SIBO and bile malabsorption, so medications exacerbate, although sometimes abs are used also in SIBO.

It is so frustrating when you know there are medications out there which you know people with the same condition find so beneficial but which you cannot take.

Please let us know how you get on.

Best wishes

Cx

[Blue58 in reply to cofdrop-UK]

Thanks for replyng. It's good to know I'm not alone although I wouldn't wish this on anyone. I have chronic reflux disease which I've already had one operation for and that's why I was told IV abs only. The brittleness of my asthma means that once the abs start stirring up everything up in my lungs my asthma can become critical very easily hence why I have to be under hospital supervision and I'm not a candidate to receive them at home. Like you I've tried colomycin and tobramycin nebulisers but found they made my chest so tight I could hardly breathe. They were first started in hospital and I thought I was able to tolerate them but when I got home I became so tight and couldn't understand why but then realised I was also having morphine for pain relief as an inpatient and I think this was masking the effects as I've since learnt that morphine assists with breathing but I don't want to spend my life constantly under the effects if morphine. Regards, Blue

[cofdrop-UK in reply to Blue58]

I really do feel for you and I wish I could help in some way. Do you nebulise a bronchodilator and can you tolerate saline to help with lung clearance?

Love cx