Actually, last week, but have only just got the letter he's sent to my GP.
On the appointment letter it's for the chest clinic and has two named doctors, both of which I've seen previously. So, a bit of a surprise when a totally different one calls me in. He signs himself on the letter as an 'Associate Specialist in Respiratory Medicine'. We had a chat, went over a few points and then he sent me for blood tests.
He's asked me to stop taking vitamin D while they check my levels plus, it says here, bone profile (?) and parathormone. He told me that will be a couple of weeks before he gets the results, and he will write to me then. 4 phials, I remember there being 2 purple and one grey but didn't see the other, may have been orange? I didn't have my hospital badge on so didn't get the usual 'staff treatment' of a short explanation.
The overnight pulse oximetry, done back in March, was normal he says. Despite the previous assumption that I may have sleep apnoea he says not.
He's also noted that I was just ending a 2 week course of Docycycline, and had had a week of Prednisolone in with that, so my chest was clear when he examined me. He's concerned that I seem to have regular chest infections although he was interested to hear that D3 tablets had lessened the frequency earlier in the year, when I was taking them. I explained that I had stopped taking them about 5 weeks ago only because I had run out and couldn't afford to buy more.
He was encouraged to hear that the respiratory physiotherapy sessions had produced some positive results with my breathing pattern. Previously I had been breathing a lot quicker and not as deeply, she taught me to breath through my nose more and to breath from below the rib cage. I am concious that I've slowed down and that I am trying to breathe more deeply and regularly.
I'm referred for PR, probably starting in October now, as September was already full from what I heard. He says to keep on with current medication and they'll see me again in 6 months.
In the meantime, a week later, my legs are really aching and making it difficult to walk about. I've started with a bit of phelgm in the chest again, give it a few more days and that will no doubt develop into the start of another chest infection. I'm feeling weary most of the time, no energy, can't concentrate on things properly.
I have tried going to bed a couple of times but the biggest problem is that I tend to roll over onto my front. That causes me to have chest pain all the day after, mainly because I have the pillows up high, and now a foam wedge under the pillow. When I roll over I pull my chest tight, through my head and neck being pushed up, as I sleep through it all. I tend to stay in a chair downstairs, and that is obviously not helping my legs much.
I'm going to ask my GP to change the anti-biotics the next time I get a chest infection. I've had the Doxycyclin for several months now and think they are losing their potency. I had Amoxycillin previously, but they didn't do a lot. I'm going to see if he'll try Ampicillin (aka Penbritin).
I'd love to get rid of the recurrent chest infections if I can, but everything I read about COPD suggests these are just a way of life...
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Gordon57
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Just had a look at the pillow you mention, I wonder if that would stop me rolling over in the night?
I have the council support worker coming next week, to do with 'small appliances' as they call them, aides to assist me in the house and all that. I'll show her and see what she says.
The only bit that bothered me is that it's marketed as a "Fantastic nursing and breastfeeding pillow"...
Hi Gordon, I like you had recurring chest infections a couple of years ago, and I know it really takes it out of you and it is depressing to. I was beginning to think that was what I was going to have to put up with forever. Then I saw my consultant who put me on Azithromycin three times a week, plus my inhalers and I have not had a really bad infection since, (I say with baited breathe) so there was light at the end of the tunnel for me and I hope for you to. Keep going back until they get you as good as you can be.
You say you have had Doxy for several months and I am wondering if you have put in, or the doc has asked for a sputum sample to check if the bugs are sensitive to this antibiotic. Might be an idea to ask.
Again please don't write off Amox - again it could just be the bugs you were brewing at that particular time were not sensitive to the Amox or it could even have been (as with me this year) the dose was not high enough and the course not long enough.
Regarding bloods I always ask what the doc is asking for.
If you have an infection brewing I would defo ask GP regarding putting in a sample - then you and GP will know what the culture grows and what it is sensitive to. Hopefully they will get it to the lab in time. My GP says to me the best time to get a sample is first thing in the morning. Well not if they don't collect samples until 5. Bugs will die off after a few hours outside the body. Check what time they collect and preferably do your physio to obtain a sample (more likely to get it from deep down) and get it to surgery close to collection time.
Really pleased to hear you are finding your physio breathing techniques helpful.
Good luck with the abs and I hope for less infections for you.
As yet, I've not been asked for a sputum sample. Maybe when my GP gets the consultant letter they may have a look at doing this. Or if I ask for a change of anti-biotics, I could suggest this ?
I'm not writing off Amoxycillin, just that it's been in the current 'chain' and wasn't as useful as the Doxy has been. I could talk to them about Azithromycin but have a feeling that my GP's are now being driven by the hospital consultant reports, rather than going back to their own investigations.
I am hospital NHS badged so, if my GP gave me the little bottle and bag/lab request, I can drop it into pathology myself
That's brilliant Gordon - you can take mine with you
Not sure what the protocol is regarding copd as I am a bronchiectatic, but I am sure many of the symtoms and feelings we have overlap.
I have a supply of sample pots and microbiology forms and when I have an infection, if I can, I get a sample down to the surgery and then I start on one of the abs I have at home, up the nebulising and physio. Until the bugs are cultured and we know what they are sensitive to, we're all guessing. Can't always get samples down, either feel too ill or it starts over weekend or holidays and I haven't got the luxery of time with my lungs.
The benefit of a sample is 1. If the bugs are not sensitive to the first ab of choice your doc and you know when the results come back which one to go for. 2. It lets you, your gp and your consultant see if there is a pattern to the nasties you grow.
Azith and I don't get on, but I do know of many peeps who feel they have great benefit from them used as a prophylactic.
Me too cofdrop. Always interesting to see what those samples show up! Staph aureus is my infection of choice but we rarely treat it...
Azithromycin has worked wonders for me and the bronchectatic base of my lungs.
Like others I am struggling to understand how you can just keep being prescribed doxy for an infection they have no idea of!
I am asked to regularly put in sputum samples to my local surgery (I have a collection of empty sample bottles at home). I rarely do actually put in samples but back in January I felt grim as, so put in a sputum sample and started on my emergency stash of amoxycillin. A few days later I got a phone call from the surgery saying they had put up a different set of antibiotics as the amoxy wouldn't touch it!. I know doxy is slightly stronger but they really shouldn't be giving you antibiotics for an unknown infection. My last sputum sample showed staph aureus but after discussing it with my doctor we made the decision not to treat it.
Just ask for a sample bottle and put it in. You might then get a proper diagnosis and more importantly some relief.
I'm getting the feeling that they are mixing up the potency of Doxycycline with Domestos - kills 99% of all known germs ?
I'm making an appointment to go discuss this and see why they've not asked for a sputum sample. I just trusted their continual 'treatment' as being correct.
I can totally understand a doc faced with a chest infection giving a broad spectrum antibiotic eg Amox without asking for a sample and I think this is the norm. However when you are getting persistent or frequent infections it is useful to get a sample, although best to start on one of the abs until the results come back - I know I couldn't wait that long.
Even then it's not that simple. Bronchis know that we often get back a false negative when we have a high temp and filthy gunk - because it's either not got to the lab in time or the sample has not come from the area in the lung where the nasties are lurking.
Also, (and this has happended to me this year) - my HI was sensitive to penicillin and doxy. However although they appeared to clear up the infection I was ill again within a couple of days. Consultant put me on amox and doxy (same drugs) but in big gun doses for a month at a time and then had clarith. Got an infection now though aaaaarrrrgh!
It might have been correct at that stage Gordon, but if your infections don't appear to be improving with the abs you have you might want to ask him re sending in a sample.
Let us know how you get on.
XXX
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