I have been diagnosed with this in the last couple of years after suffering recurrent infections for years that were diagnosed as different things and eventually ending up in the tropical disease department!
Well that is a whole other story.
The thing I wonder is do other people see a specialist regularly? I have had two appointments since being diagnosed. I was offered 'pulsed Arizothromycin
I think it was called it effected my hearing straight away - I never knew the they can make you deaf!
He told then more less hard luck if I couldn't take them and he would write when I had another appointment that was about a year ago I feel I am worse and wonder what treatments other people are getting.
I have been taking Vitamin D and some herbal cough medicine and Antibiotics when I get a bad infection.
Sounds as if you are being given short shrift! If you are bringing up a lot of gunk you need to take a specimen of it into your gp for analysis to get the right antbios for that particular infection. You should also ask for a referral to a physio who will give you exercises to do to help you clear your lungs. If you feel you can take talking to a lung specialist again then ask for a referral back to see what else they can offer.
BLF helpline are very useful for advice and open 10 - 6 weekdays 03000 030 555
Hi Tyiesha, I have asthma as well as Bronchiectasis (only just been diagnosed with B) I have a Consultant for Asthma who has been brilliant and I now have an Asthma nurse. As soon as I feel unwell or start to cough consistently I send a specimen into my doctors and notify my asthma nurse. Unfortunately the sputum has been negative so far and until they find the right e-coli etc they cannot treat me. So I keep on going. I cannot complain I have had great care.
You should go to your doctors and demand to see a consultant, you do not have to be nasty just tell him/her you cannot go on this way. I was desparate last year and because I could not wait 6-12 weeks for an appointment I chose the consultant and went private. I cannot say I felt I got much value for money as I was still at the diagnosis stage, however, the consultant was very concerned and did help me. I have seen him every 4 months ever since and I have also been referred to other consultants inn order to rule other problems out. It has been a long journey and at times I have felt very depressed and alone (even thinking I had cancer at one stage), however, looking back everyone has done everything they could for me, but if I had not asked for help I do not feel I would have got it.
Good luck and if you cannot afford the private fee ask to be put on the urgent list so that if there are cancellations they think of you first.
Maximonkey
Hi folks, i too have Bronchiectasis. I was diagnosed 14 months ago, after years of suffering with pluerisy and pneumonia. I have a great GP and Respitory consultant. The 1st thing that should be done once you are diagnosed, is to refer you to a good physiotherapist, to teach you have to clear your lungs every day that well, get full of gunk, if the gunk is not removed every day, it will lead to infections and each infection could worsen your condition. There are various medications and inhalers that can be used and are of great benefit - daily gentle exercise is a necessity - it seems that most people see their consultnt dependant on the severitry of their condition. Although mine has installed a telemonitoring system into my house - each morning i put on a oximeter on my finger and it gives a reading of my oxygen saturation levels and pulse to a team of triage nurses, if the readings or too low or too high, they contact my doctor or community nurse who calls out to see me and check me out. There is a really, really excellent site called Bronchiectasis R Us, that anyone can go and look at, you dont have to join,there are over 2,000 members and what they dont know about Bronc isnt worth knowing. All have Bronc., and even tho they would advise you on any aspect of Bronc, they always recommend you consult your GP before thinking of embarking on any course of treatment. There is a drop down menu on the site, at the top of each forum board, which has extensive information on all aspects of Bronc, e.g. medications you can take, physio you can do, where to get help, how to do chest clearance, what is Bronchiectasis, the list is endless and full of factual content, it really helped me, as not too many doctors know about Bronc. so if you learn as much as you can about your condition then the more help it will be for you. It really is like an adult form of cystic fibrosis, a lot of the treatment for Bronc. is the same as for CF- IF You get time, i urge you to look at the site. when i was first diagnosed i was on oxygen 16 hours out of 24, with the help of the site, my wonderful gp and consultant, i know only need to use oxygen 4 to hours a day, have been infection free for almost 8 months (i had 7 infections when first diagnosed as i didnt know anything about Bronc., until i foud the site) so there is a lot that can be done. Hope you both get the help you need, kind regards ljc xxx
Thank you for all the information I have booked an appointment with my GP the earliest is 4th of next month and I will ask for a referral to a different specialist (there are two hospitals near my home). I am getting worse all the time and no one is helping or indeed it seems interested. I visit a herbalist and that is about it. If I get an infection I either ask for antibiotics or chance the walk in centre. I haven't seen the specialist or a nurse or a physio for around 18 months.
I just want to stay as well as I can and do as much as I can and can't find a way to do it by myself.
Thank you again
Sorry forgot to ask Maximonkey how much was the private treatment and does that mean you have to pay for all treatment if it was within my means it might be an option as I dont know much about any of this or what I am supposed to be doing I have been taking my grand daughter's inhalers as when i asked at the hospital about inhalers the nurse said Doctor will have given you everything you need which was nothing!
I will not repeat the excellent advice above which I would absolutely back up, but I must comment on something you have said:
" I have booked an appointment with my GP the earliest is 4th of next month." !!!
I admit I have to wait a week for an appointment with my GP (though if it is urgent I can see her or one of her partners the same day), but three weeks? Also I see my consultant every 2-3 months - every 2 weeks at one time - and she always reports back to my GP. All this is NHS.
So I think you are not getting the treatment you deserve - and need! Even with chronic lung disease, life can be so much better with the right treatment. So please, I wish you the strength to pursue better treatment on the NHS, which you are entitled to. Hope you'll be a lot better soon.
Hi Tyneisha, please, please ask your doctor if he/she meant to give you any inhalers as I'm sure this can't be right and have a look on that site ljcurley recommended, I'm sure you will find some helpful hints. Good luck.
Thank you all I am going to go to the doctors armed with all this information I have found out on this site. I felt so lost for information and abandoned sort of. I have no appointment for the specialist and haven't seen him for well over a year.I am going to ask to be referred to another one. I have no regular contact with anyone and was just trying anything and drinking bottles of cough medicine for England.
I am going to ask for some help I feel so much worse than the last time I saw anyone I have no idea how to go on with this disease or what to expect. I looked at the other web site and feel more positive than I have for some time I had to some extent given up.
Thank you again I know what I am aiming for now and that I should be getting some help.
Tyniesha you are being short changed. You really need to get you assertive hat on. You have bronchiectasis and should be monitored by a respiratory consultant. Before you go to the gp check out online the consultants in your area or beyond, or through Dr. Foster. You not only need a respiratory consultant but check out one who has a special interest in cf/bronchiectasis. When you have chosen the consultant ask your gp to refer you to them.
Presumably you've already had ct scan etc. Don't be alarmed if consultlant wants to check you our for cf with a sweat test, it's not a big deal and the fact it has been requested should give you confidence in them. The most important thing as well as sorting out a medication regime is that cons. refers you to a respiratory physiotherapist who will teach you invaluable mucus clearance techniques and many gadgets eg. the acapella. We all have our own preferred techniques and you will work out what suits you best. The most important thing is that you do it regularly. It's a pain but if the gunk is cleared out of your lungs you are more likely to keep infection at bay.
Curley has already mentioned Bronchiectasis R Us. I am happy to say I have the privilege to be one of the 2000+ members. It was started by a wonderful young woman we all love called Angel and Curley is right - what they don't know about bronchiectasis on BRUS is not worth knowing. Information, support, friendship and sometimes a giggle. By the way there is also a recommended consultant topic which could be useful to you.
You have had some good info from you friends on here Tyniesha and I hope it has given you the knowledge and strength on your journey to find a very proactive, supportive consultant.
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