Hello everyone, thank you so much for your kind messages- I'm overwhelmed at the response! I've really felt cast adrift from services as no one seemed to have any answers/info or advice and we haven't met anyone with the condition either.
Mum has the condition where she is making too much mucous. She has a suction machine at home, but has a pretty ineffective cough following her cancer surgery ten years ago. She had colomycin antibiotic via neb twice daily, takes mucodyne and we give her back tapping twice daily to help bring the mucous up ( something that we've basically taught ourselves-thank goodness for YouTube!- as the only physio we have ever seen was for a brief moment on a hospital admission).
I just feel I'm constantly trying to fight for services, I keep asking for a care plan to be put in place but nothing ever happens. I've fought to get her iv antibiotics at home- which she has had successfully- but it took days of messing about with GP visits, trying ineffective Antonio and as you all appreciate, time is of the essence in such cases. Mums condition actually significantly deteriorated after contracting pseudomonas in hospital. They took her off all meds and basically said see how it goes because they antibiotics weren't working. That was in Jan 2015. By some miracle she self healed and after ten weeks in hospital ( with MRSA, cdiff and a super bug😡) she managed to come home (at 6.5 stone😔). The admission itself almost killed her, but at no point did I know that she could have had antibiotics at home. It was never suggested.
They STILL try to push for admission now (had a recent bug after ten months clear) but I have to fight to keep her at home. She had iV meds for three days and was much better thank god.
I just feel it's a constant battle. She's under weather today so trying to get district nurse out to do bloods but to no avail. Sometimes mum can't quite work out if she's coming down with something or just having an off day, a quick blood test can check infection levels and put her mind at rest or get her on antibiotics straight away.
We've got no bronchiectasis expert to refer to, she was due to see chest consultant but someone misplaced her referral and she's only now had an appt when it was due in Jan! We knew nothing about it! I just feel like I'm banging my head against a brick wall all of the time😡 We live in Wales, do you think that would make a difference to her care pathway?
Thank you all for listening 🙏🏼