How to work with your Drs

[Paulabpa]

Not to sure how to work with my drs, i have never been ill, except when i was a kid cuts Asthma ect.

Long story short im 47,all i do is give my problems to the drs, i have asthma but only bad every 7 years or so then it goes away like i never had it,i have ABPA they have told me,but when i read things of the nett, it all could be wrong,they are no true tests that are spot on skin tests and symptoms but i only have 1 symptom thats poor breathing,i have a cough only when i take steroids and bring up loads of mucas then it goes. fatigue never, weight loss i wish and never a high temperature? I dont want to tell the Drs how to do there job,but when you go and see them they try to prompt you into saying what you want them to do so im lost abit?

Not to sure why ive put this on here but its taken 13 months to tell me,so i hope they are right has anyone else have the same problems.

So do we as patients tell the drs how to go on, in order to get the job sorted,or does this sound like im disrespectful.

[cofdrop-UK]

Hi, If your doc is asking you what you want her/him to do, I rely can't see why you telling them what you would like is disrespectful. Actualy having bronchiectasis I have learnt you have to be very proactive and be your own advocate and that this is the case with whatever health issue you have.

So I would ask you 'what is it you want your GP to do'. If it were me I would want a definitive diagnosis, advise on how I can help myself and what treatment they can offer. I find when they ask this they either are not sure themselves as it is outside their expertise or they know you well enough to know you are quite knowledgable about your own condition and will work with you.

Do you want to be referred to a consultant perhaps?

It depends largely on the docs attitude and yours too, but you should both be working to the same end. Gone are the days when people tug their forelock when in the presence of a doc, that doesn't mean a lack of respect.

Good luck - hope you get sorted.

love cx

[peege]

Hi. If you actually do have ABPA then it needs to be controlled, contained and monitored. You may only have a little of the aspergillis fungal growth so it's really worth knowing. Did you have a CT scan? This would show up any pockets of it in your lungs, I'd say it's pretty important to find out. It can be managed.

Just look at UK websites. GPs have to follow a process, I think it's called NHS pathways, they follow the process/pathways according to your answers. Unfortunately most GPs will know little about ABPA & suchlike as they are just 'general' practitioners. Mine had to look it up when trying to diagnose me and write my referral. Turns out I don't have a strong allergy to the aspergillis, luckily for me.

All the best. Peege

[Paulabpa in reply to peege]

Yes the consultant says i have ABPA,skin test and blood tests no ct scan.

For me i have been having steroids every 5/6 weeks for 10 months now,but i have seen a drop to 3/4 weeks the last 3 months.

I feel great,but over a few weeks i can tell how hard it gets breathing,walking ect until i cant walk 10 feet or lift a bag, carzy little things i cant do,then pop a few steroids and im blowing my nose the stuff that comes out over a few days im sure could fill a pint bottle.Then its a full cycle again for another few weeks.

Today ive been put on steroids for 2 months 40mg for a week 30mg for a week 20 mg for a week then 15 mg ontop of Aledronic acid and accerete D3 tablets. With a DEXA scan for bone density?

For anyone that has ABPA is this normal symptoms?

[peege in reply to Paulabpa]

I'm just not sure, I don't have it although I was investigated for it. Blood test, skin tests & CT scan. There are just a few people on here with it, some have it along with their bronchiectasis. I'd have thought a scan would be important to find out how much you have to see if anti-fungal meds are necessary. I do recall one lady member found out she had to be careful with exercise, not to leap about too much because the spores can break away & spread.

If you're in the UK could you call the help line 03000 030555 office hours, call Monday? They have trained medical people who can guide you on what to expect in the way of treatment and getting the best out of your medics.

Wishing you all the best,. Peege