I had an allergic reaction to Azithromycin a couple of weeks ago, but because it was the weekend I thought I would ring the NHS Direct first just to make sure it was a reaction to the drug. Symptoms were mild, i.e really bad itching all over, but it wouldn't go away even after you scratched it, and swollen eye lids. The NHS DIrect team got a nurse to ring me back, then she wasn't so sure, so she got a doctor to ring me back. The doctor confirmed it was a mild reaction but to stop taking the antibiiotics until I can ring my GP on Monday. She told me to take Piriton and not Cetirizine as piriton is faster working. Anyway after sorting all that out, the doctor asked me what I was taking Azithromycin for. I told her my hospital consultant had just changed my ab from ciprofloxacin to Azith as I have Bronchiectasis. She then apologized to me as if it was a death sentence and I am on my last legs.
"Oh, I am sorry"
Why would she do that unless she knows something more I don't about Bronchiectasis?
Little bit worried now, as I am only 41 and don't want to die just yet!!
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kirsty72
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Couldn't get through to the consultant, so went back on to ciprofloxacin straight away, as I had some left. I wrote a note to my gp to say what has happened, but not heard back from them. I'll just wait till April when I have to go back to see the resp consultant. Thank you for the reassurance tho. X
This has happened to me in the past more than once but usually they say something like 'that's nasty'. However that was in person and I felt it was more of an acknowledgement that these doctors knew the stuff I have to do to deal with bronchiectasis.
It is much more difficult by text or telephone to interpret exactly what they meant, especially if you are feeling unwell. It has obviously come across to you, as you explain, that she thought you must be gravely ill and that bronch was a death sentence. She really wouldn't have meant it in that way because it is clearly not. True it wasn't my 'phone call hun but I interpret it very differently. I would guess she thought initially you were normally well and had been given abs to which you had a reaction. On further questioning she found out you had bronchiectasis. I see her comments as a positive - she now knows you have a lung condition which she clearly understands. I feel she was simply acknowledging the difficulties and work you have to do to keep reasonably well and the complexities of your medicatiions.
She obviously knows about bronchiectasis but she doesn't know more than your consultant. I have had bronciectasis since I was 5 months old and I am now 65.
Sweetheart please don't over-think this comment - I really, truly don't believe for one minute she meant it to come across in the way it did and you have years of good living to do.
I think she was sorry over your diagnosis of broncs I never leave my doctor unsure I always ask my doc might say I bully them but it's your health so ask anything you want. Take care. X
Thank you guys, I really appreciate your comments. Yes I am a little paranoid to say the least!!
I just feel so sorry for my son (age 14), husband (age 51) and of course myself (age 41).
I have other issues too, like Asthma, bronchiectasis, osteopenia, a bleeding ovary which has to be operated on the be removed. (had a hysterectomy at age 30, but left ovaries in), endometriosis, on anti depressants, giving up smoking (on day 38 now) skint, obvious low self esteem, hormone replacement therapy, nasal inflamation which has just been operated on, to name just a few.
My son see's me breathless most days, but keeps quiet, my husband is good except for the fact he can't physically see anything wrong with me so I must be alright, and for me to go from being a very independant person to a weak pathetic ill feel like a hypocondriact kind of girl is destroying me.
Do I want to die? Some days, yes, some days no.
I wish I could just go in my sleep and not know about it!! I don't want to drown in my own mucus!!
I lost my 53 year old Dad to Mesothelioma (asbestos cancer) on the lungs, 5 years ago, my Nan dies of COPD 6 months after that, and so did my great nan.
My mum is an alcoholic, 40-60 a day smoker and venomous, violent and extremely hurtful not only physically, but emotionally too!! Why is she still alive and not the people who were kind, considerate and fun to be with?
My husband thinks I'm neglecting him as we don't have sex!!
I think we can all empathise with you hun - lots of us have other health issues to deal with - as if bronch isn't enough.
I am so sorry you have had so many bereavements of close family members and the situation regarding you mum must be very hard to deal with.
Do you think you need to see your GP with regard to your present anti-depressants? Or do you think talking things through with a psychologist would be of help?
Just wondering too if your consultant has referred you to a physiotherapist as you don't mention doing any form of lung clearance.
I've had years of therapy that's why I am so open about myself. I have nothing to hide anymore!! When I was 19, I was diagnosed with manic depression. Up on a high one minute, rock bottom the next. Been on the same anti depressants ever since. One psychologist said I'll never get off them now as I've been on them for 22 years without review. So bit scared of coming off them now tbh.
I've got an appt with cf team tomorrow to have a sweat test done just to poss rule out cystic fibrosis, then an appt for physio next week. Never seen physio before so not too sure what to expect.
Sorry about my moaning. Hopefully I'll pick myself back up again soon. Xx
If you can't moan to us and let off steam who can you go to? Just look for all the help that is available and take it. Is there a Breathe Easy group nearby that you could go to, they would be very supportive as well? Take care. Lizzy
Breathe Easy Groups are support groups in different areas all over the country, under the umbrella of the BLF. Go to the BLF website blf.org.uk, scroll down to the map and enter your post code to see if there is a Group near you. Our Group meets once a month when we have a speaker, not all health related but covering a wide spectrum of interests, and refreshments and meet others with similar lung related conditions. We also meet for coffee in a local hostelry in between monthly meetings. All very sociable and friendly. Hope this is helpful kirtsty 72. Take care. Lizzy
Kirsty it seems to me you have a very pro-active respiratory consultant. It is very positive con is giving you a sweat test to eliminate cystic fibrosis and has also referred you to a resp physiotherapist. Physios are usually really nice folks and your meeting will be pretty informal. The physio will go through various techniques and gadgets which assist with lung clearance. We are all different and you will both work out which suits you. You really should do any physio you are taught yourself every day. Yes it's a pain in the but - but I feel sure once you get your lung clearance under control along with a medication regime, it will be one problem less for you and you will feel better in yourself from a lung point of view.
Whilst with the physio she/he might show you or even give you either a flutter or an acapella, but if they don't ask about them. Physio should show you how to use them properly. You can now get the flutter on prescription from your GP. I will put up a couple of links so you can see what they are and what they do before you go.
Please don't rush out and buy one 'till you see physio. If you do need to buy an acepella eventually you can get a medical VAT exemption form from company. I have had a couple from the hospital, but when my last one broke (they're a bit fragile) I bought one from Amazon which was cheaper than the med companies even with no VAT reduction.
Don't let this thing get the better of you, death.........that's a long way off.
My wife used to think I was swinging my leg when I couldn't go shopping or when we did go shopping I was puffing and blowing like an old steam train, But you know something, that's fine, it stops me from being self pitying and keeps me trying and moving.
As many people on this site will tell you ( and there are a lot with an abundance of knowledge ) a positive mind helps you overcome your fears and doubts.
Talk to your kids and husband, I think you will find they are in need of reassurance as much as you.
Don't be backwards at coming forwards with your doctors / consultants you want facts you can understand not talk that confuses you.
If need be ask to see a psychologist to talk through anything that bothers you.
There are lots of things available to you to help manage bronchiectasis, don't be shy about finding out what help is available to you.
Life is good and I`m sure you have a lot of life to live.
am loving your positivity. Can I buy some from you please? I can't help my self pity!! Being only 41, I feel I should be in my prime, not feeling like a 91 year old!! I used to be a dancer for 18 years, now I can't even run a bath without becoming breathless. I try to sleep and all I can hear is me wheezing. I've gained weight, look like poo and deffo feel like that too. I must take at least 15 tablets a day just to stay alive!! I've really really really had enough.
I know how you feel, I was a semi professional musician, played various instrument and a singer.
Although I ain`t got the puff to sing anymore, I take some comfort knowing I can still play.( I don't perform anymore though).
The point, we may have lost one gift but we retain so many others.
I was saddened to hear your story and how it has left you feeling ( your personal life story that is ).
I think, NO! I know you can beat this thing.
The past is best left in the past cause, the best is yet to come.
Remember : you may have lost something but, there is so much more you can keep.
Take all the advice you can get, take all the help you are offered and enjoy life with your family.
Give them the time and space to adapt to your situation show them love and care ( as I`m sure you do anyway ) and keep talking they are no doubt fearful for you.
Feel like dot cotton off of eastenders!! I'm sure people think I'm a hypochondriac. I do tell people that if there was nothing wrong with me, then they wouldn't give me medication!! But if you can't see it, then you must be okay? ! I just wish people like that could be in my shoes for 24 hours, then they wouldn't complain!! Xx
I also look deeper into things as doctors have given me wrong meds before that could of killed me if I hadn't of done my homework on them first. I just like to know what I'm dealing with. Xx
Hi Kirsty you need to stop worrying what other people think and get a grip of your conditions. Once you've accepted what's wrong with you the easier it becomes. You've had to deal with lots of stuff that's also had an impact on your health stress has a lot to answer for. Please calm down take advice from the lovely people in this community and if you have questions don't be afraid to confront your doctors it's your life it doesn't matter what age you are we're all in the same boat. Take care chick. Xxx
Hi Kirsty, lots of good stuff here. Couple of things from me - we've all been in the pit of self pity at some point. Good friends and more understanding of the condition help a lot. Like cofdrop my sis-in-law had bronch from a small child and lost half a lung owing to it not being recognised and treated. She is in her 60's now, had it all that time, and STILL going strong, no thoughts of dying.
If you haven't yet managed to hear Stitch's youtube which for some weird reason isn't coming up as a link, copy and paste it into your browser - i just did that - very appropriate for all of us like she says. (Ta Stitch, id forgotten this one!)
Another thing: when i went to pulmonary rehab, the people with bronchietasis were the strongest there. I partnered with a lovely woman in her 80's who had had bronch for many years and was fit as a fiddle. If you haven't already, talk to your GP or consultant about referral to a pulmonary rehab course - its a series of exercises tailored to achieving maximum fitness and you would be with others with similar conditions, all in the same boat, and everyone starts from where they are, doesn't matter how unfit you are. Lots of solidarity and friendship there and its impossible not to get fitter
Didn't you mention seeing a respiratory physio above somewhere? Maybe you could talk to her/him about it. They would be the ones running the rehab course and certainly where I am (Kent) they can refer you themselves and let your GP know. I didn't know there were age limitations - if they get you earlier, you will benefit from the exercise training and the education which is the other main part of it, stay healthier and need less treatment and so save them money in the long run - no brainer. If you think your GP would be more sympathetic, then yeah, speak to her/him.
The physio has just rung to cancel the appt as she has a funeral to go too. So stuck again!!
Whichever comes first, a g.p visit or physio, I'll ask them about being referred to PR. You are right though about the younger you are the more benefit you should get from it?
It should be a no brainer really, but obviously the Resp Consultant was having a bad day. x
Hi Kirsty, re being too young. That's nonsense. The modern thinking is to get people to PR much earlier so they can manage their conditions, improve their quality of life and above all, educate them. I can't believe they said that to you. Knowledge is power in the lung world. You would learn so much.
Listen to all the great replies you've had And keep requesting it from every medic you meet.
All the best, Peeg
will this link work (same as stitch posted above ) using copy paste Garth Brooks, The Dance hope this is the one Stitch:
No unfortunately not, as I haven't been diagnosed with COPD. Bronchiectasis and Asthma which apparently isn't COPD???!!! Oh such confusion. Why can't medics sing off the same hymn sheet for once!!
Thank you junespoon. I will try to stay strong, although with other issues, it's very hard. But for people like you sending their thoughts my way, really does help me. Again thank you. xx
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