So I saw the GP last friday. He said that after my 3rd lot of amoxicillin I should have been moved on to something else. He has put me on 200mg of cefixime twice a day for two weeks. I asked about going to the RBH and he said that it was down to my current consultant to make that referral. He said that GP's can't really step on their toes and that it should come from the hospital. The problem is I don't see the consultant until 17th June. We spoke to consultants secretary yesterday who was taken aback when we asked if he would refer me on to the RBH. She went away for ages then came back and said what were we hoping to gain out of moving to which we just said that it was a specialist hospital, leaders in their field with someone who was specialised in my condition. She said that the consultant would review my notes and either she would let me know before my appointment or it would be something we discussed at my next appointment. From my point of view i'm worried that waiting 5-6 weeks will be more harmful to me but I just don't seem to be in a position to do any more. This is so frustrating and 6 days in to my antibiotics things don't really seem to be changing. I still bring stuff up about 4 -5 times a day and although it's changing colour it's still really sticky and quite lumpy which i'd have thought would have got better now. I just don't know what to do x
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hollybobs
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Totally empathise with your issues with HI. As you know I have been colonised now for over 2 years. I am lucky enough to have a cons who is a Lead Clinician in CF along with 2 other proactive CF consultants and because I am intolerant to many abs we are struggling. I feel you have a much better chance of getting rid of this pest given the right treatment.
You main issue presently is to sort out this HI infection. You don't say if your 4/5 times of getting stuff up is due to physio or if it is spontaneous, or indeed if you normally have lots of gunk, most of us do but there are some dry bronchiectatics. I feel you should go back to your GP for your meds to be reassessed and maybe a chat about taking prophylactic meds once this infection has cleared up.
It is difficult with regard to your consultant but I would check out her special interest - if that be respiratory industrial disease, asthma or copd, I would have thought that was reason enough to change. You could check out with BLF if you can self refer, but you will need to bear in mind if you need to go in 5* as an emergency you will probably find you will be at the hospital you already attend with the same consultant. If your last visit was your first she didn't do too bad, although I think there are a few things she perhaps should have covered, which she may have done at your next visit. Below I have copied my quote from your last post just to save typing it out again.
['Your new one has done the right thing in referring you to a respiratory physio and indeed to ENT. I would just add has your consultant a special interest in cf/bronchiectasis - check him/her out with your local hospital or Dr. foster. Believe me it does make a difference. Putting the HI to one side for a mo, I would have thought he/she might have discussed giving you a sweat test to eliminate cf. I would have also thought con would have discussed a medication plan. Are you on any inhalers? Did he discuss any mucus thinners or whether nebulising saline either 0.9% (same as amount in body tissue) or hypertonic saline 3%, 6% or 7% which would help to draw the fluid into your lungs whilst doing physio. Lastly I wondered if he mentioned taking an antibiotic (not as a treatment but as a prophylactic) i.e. many folks with lung issues take say Azithromycin 1 3 times a week or one a day.']
Just do what you feel is right - you deserve the best treatment. Maybe see if your 'phone call has had the desired effect and she goes through all the things you would expect her to at your next consultation.
Hi, what category of Bronchiectasis have you got eg. Cylindrical bronchiectasis is the mildest form and reflects the loss of the normal tapering of the airways. The symptoms may be quite mild, like a chronic cough, and usually are discovered on CT scans of the chest.
Saccular bronchiectasis is more severe, with further distortion of the airway wall and symptomatically, affected persons produce more sputum.
Cystic bronchiectasis is the most severe form of bronchiectasis, and fortunately it is the least common form. This often occurred in the pre-antibiotic era when an infection would run its course and the patient would survive with residual lung damage. These patients often would have a chronic productive cough, bringing up a cup or more of discolored mucus each day.
Not 100% sure on your problems but if the gunk is getting lighter that should be a good thing as it is likely improving the infection. I have been amazed how much you can shift in a day.
The problem is I don't know what type of bronchiectasis I have. I've never been told. I don't even know what is my normal baseline as i'm never clear long enough of H.I to find out. I literally just come off antibiotics and then 10 days later off we go again During the 10 days or so after antibiotics I have had spells where there is no cough and no sputum at all.
I do physio twice a day morning and evening and sometimes that will get something up sometimes it won't. Yesterday for example I did it in the morning and got a small light coloured lump up. Then by about mid morning I could feel that it was there so took myself off and did a cycle and out it came. The next time was about tea time and again I could feel it there so did my cycle then I did the cycle again at bed time and nothing came out. That's generally how it is day to day except when i get an infection it starts off really dark green and very lumpy/sticky and a bit more often. I don't cough all day at all, just cough when I know it's there.
I've tried googling my consultant, tried looking up the hospital but I can not find him anywhere. My mother in law works at a different hospital and she got their consultants to do some research and they couldn't find him.
I don't have a medication plan. I literally just take antibiotics when i get an infection (all the time at the moment!). I don't have inhalers, I don't have nebulisers, I don't have anything else. I just do my breathing cycle and take vitamin c, zinc and fish oil every day. I've read a lot about people taking antibiotics 3 x a week but that's never been discussed. My consultant sent me to see an ENT specialist but he has written back saying that from looking down my nose with a camera he couldn't see any signs of a post nasal drip or any problem at all that would be a contributing factor. We are waiting on the sinus ct scan results but he didn't seem to think that would show any problems. So that rules that out.
It's a right pain and just don't feel like it's being managed at all. I last saw the consultant in december, and that was my 2nd appointment with him. The one in 5-6 weeks time will be my 3rd appt. x
Personally I don't feel the knowing the category of bronch you have is a priority right now apart from routine elimination of cf. Wish you luck in sorting out the 2 probs you are dealing with.
Offcut we are all different and many bronchs, including myself, bring up copious amounts of gunk, some less so. The problem is although the meds are giving he impression of having an effect on the HI i.e. it becomes lighter - the pests are not being evicted and the infection is back within days.
Hi Hollyhobs, I too have Bronchiectasis and like you have been in this position. Have you been told to send sputum samples to hospital before you begin your antibiotics? If not you probably will have to wait until you next appointment to see the Consultant and ask for his/her guidance on how you are managing when you fall ill. If you do send samples - have the results reached your GP. In the last 6 months things have been very iffy with the labs in my area and samples have been lost. This of course results in the wrong medicines being prescribed. I hope this has not happened to you. Can you speak to your asthma nurse? My nurse if fabulous and is very helpful. Have you tried speaking to her? Good Luck and let us know how you get on. Maximonkey
Yes I always send sputum samples before starting antibiotics and they all come back to the GP. Sometimes a little later than normal but I've been phoning the consultants secretary to get the results from her. They all come back as Haemophilus Influenzae I've phoned the consultant and asked for a referral to the Royal Brompton Hospital so I'm hoping they will agree!
Hi hollybobs
I am new to this sight, registered 2 weeks ago, although have been ill for several years. No-one had thought to point me in this direction! Anyway, your story almost identical to mine and it gave me confidence that I am not alone. I have emphysema diagnosed in 2007 and was not doing too badly until Feb.2013. Hospitalized with pneumonia. From May, like you have had monthly infections, not always the same one. Eventually after scan was told, in November I had Bronchiectasis. Put on Amoxillcillin for 6 weeks . Returned to Con. 3 minute interview in which he said stop all antibiotics and go and see Nell. She turned out to be a physio. In meantime was very poorly GP just said "I don't now what's wrong with you." I put the phone down. He did ring back and gave me Augmentin Felt better went to Spain and ended up in hospital, pneomonia. They told me I was being treated badly and that if I lived in Spain there was a lot more they could do for me. This gave me confidence to start fighting for more. I changed my consultant went for first visit privately as wanted something done quickly. He's put me on azithromycin 1 3x a week, Seretide accuhaler and kept me on an inhaler that the Spanish had given me. Incidentally my doc. and pharmacist didn't know what it was so I had to contact manufacturer to sort it out! This has taken 6 weeks since saw Con. and just started all the meds so not sure how will be.
Do you get depressed? I do, but am hoping things will improve now as have read good reports. You must take things into your own hands and keep nagging. I don't think GPS know much about bronchiectasis. I live in a small town and have been told it is rare and only one other patient with it here.
I hope this has been of some help to you and I know it had been a great help to me to hear from someone who is the same as me. Good Luck and remember you can ask for a second opinion. The second one I asked to see is in the same hospital as the first and they both share the same secretary, but the difference was unbelievable.
Let us know how you get on
Love S
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