What to do now

Ive just got my copy of letter from consultant and to say i feel a complete fraud is an understatement!

He basically says i have "simple bronchitis" my ct xrays fev1 fevcwas normal im not allegic to animals etc (which i knew) and im to be treated with antibiotics occasional ! and do not require steroids!!! He goes on to say my fatigue is probs down to my rheumatoid arthritis ( which i agree prob has but not fully) i dont know what to do or say etc next i see him on tues ....i am now in tears as currently on both what he says not to take!!! Ive researched bronchitis and it says its upper airways ...mine is always only in my lower left lung every time . What can i say or do next. My peak flow is 200-300 max everyday since this started. My normal is 450. Im so worried now that my gp will ignore my symptoms from now on.

37 Replies

  • Telephone the helpline - click on the red balloon in the corner, I am sure the nurses will be able to give you practical advise. Good Luck TAD xx

  • Thanks TAD x ive just emailed to see when results of Alpha 1 test back and should have them in couple of weeks.

  • Its a nightmare for you especially when you feel so ill - it doesn't matter whats written on the paper if you feel ill, you are ill. I just thought as you were seeing the consultant next week it might be an idea to talk to someone who could give you medical advise. You could go back to your Doctor and ask his/her advise if you have a good relationship with them. Good Luck and don't give up, dig deep and find the strength to deal with it - it is your health!! TAD xx

  • Also, have the doctor refer you to a pulmonary nurse. They are good and down to earth. They have to deal with the awkward feelings more often and seem to have kinder answers. Hope you can do this.

  • Thanks ...no not as yet but hopefully i will get one x

  • The BLF nurse will also be able to give advice on what to raise with your consultant, what questions to ask, etc. Do give them a ring before your appointment and take some notes. Having things in writing will make sure you don't forget to mention anything. Good luck. xx

  • Good advice above from your friends hun. Agree it would help you to talk to BLF and/or GP.

    Love cx

  • Thank you ...I have emailed the Alpha 1 to chade up my results but wont be here in time for next week. Ive also emailed them to see what questions and such I should be asking. Thank you everyone xxxx

  • Oh dear I do feel for you.You must be feeling so frustrated poor thing.I suppose on the positive side,it is good getting those results,in one way.Do you think your tiredness might be due to the RA? I don't personally have it,but my friend has,& I know how whacked up she gets with it,at times.

    On the other hand,we do know our own body's, so you need to get it properly investigated.It will be interesting to see what the results are from the Alpha1 tests.

    You have been given good advice from others,so hope it helps you.

    Don't give up! You'll get your answers soon I believe,

    Good luck with it all,take care xxxx

  • Hi Judith. I know the feeling! How depressing and frustrating for you. You've had some great advice from the others and acted on it so you've gotten somewhere anyway. I don't see why doctors can't be more reassuring. It must be clear to them that the patient is very worried. I hope your consultant can come up with better answers. Dig your heels in this time and get answers. I do hope you are feeling better anyway. Let us know how you get on. Sara xx

  • I have the opposite problem, doc says I've cot severe copd, I think it's only mild because I only get out of breath going upstairs and I do'nt use oxygeh tanks

  • Thank you everyone. Im going to ask for a management plan because it is not acceptable for me to be unwell for nearly 6 months over winter ive had this for 5 winters and yes i am very happy that i do not have anything sinister and have to have oxyogen etc. However id rather have antibiotic s for autumn to help manage me over the winter so i dont get to be like this again. I know my body and within the hour of taking the steroid my coughing has eased and within 24 hrs of being on antibiotic im not coughing up as much gunk and pain in back has gone. Its just how to get this across to a consultant who is obviously well qualified and i am not!! How ive been diagnosed with asthma and treated with it for 20 yrs??? Then see him and told no and stop allinhalers and no steroids and just have occasional antibiotics.

    I believe the tiredness has been down tocombination of both and tge endless night s coughing!! Thank you to all for advice Judith xxxx

  • same as me ,my steroids work within a few minutes stop and me coughing

    within the hour of taking the steroid my coughing has eased and within 24 hrs of being on antibiotic im not coughing up as much gunk

  • Well we shall see x

  • Well Tigershay I really feel for you, you must be dumbstruck especially as you are ill, but just a thought, is not COPD chronic long term bronchitis or emphysema or both. Must be saying yours is not chronic long term then only acute. Even I'm confused at the details in your post from the Consultants letter. I would be looking for a second opinion if I was in your position, good luck with sorting it out. Keep as well as you can x

  • Haha im laughing because this was a second opinion!! Ive been supposedly asthmatic for 20 yrs .....not had any probs in that time just took inhalers. Five yrs ago at winter ive had these awful infections which go to my left lung only. I respond to antibiotics and steroids but this winter have been worse and each yime finished meds its flared up again. Ivd looked up chronic bronchitis as this is what he said it was and it basically says if symptoms ard logef than two yrs well this is five!! Im at a loss completely xxx

  • Hi tigershay1

    How can he say you are normal when your peak flow is only 200 ti 300 max? Consultants can be pillocks, you didn't by any chance attend respiratory at New Cross Wolverhampton did you?, they are good for some things but I avoid the place like the plaque when it comes to stuff to do with asthma. You see your GP again and hopefully he will refer you to someone with a brain cell.

    Best regards


  • No i wasnt there i was at RVI Newcastle whats laughable is this was for second opinion!!! But i know what im going to say as been on steroids and now back on doxyciline due to flareup so i think after 50 yrs of living in this body i damn well know how it works or not!!! The gloves are on! Thank you for your comments it just shows experts can get it wrong x

  • And here's me wondering if my con Prof Jones also works up your way as well as here inSW London!! I'm horrified for you, will reply more later xxx

  • Thanks peeg xxx

  • Hi tigershay1, I do sympathise as I also was diagnosed with asthma 20years ago and given two inhalers, my peak flow on a good day used to be 450 but now is much less, and down to 150 sometimes. I have a chronic cough with lots of infections, but I am trying to follow peeg's and TADAW's advice about looking after myself, especially this summer before the winter bugs arrive. Best of luck with your appointment, I hope you get some answers

  • Thank you knitter. You see i actually follow that advice . I have always been an active person going to gym swimming eating well etc for the last 10 years ive ridden my horses every day plus all the usual jobs looking after them . Last 6 yrs ive had a personal fitness trainer every week!! So i think ive done everything i can to keep as "healthy and well" plus all was ok till 5 yrs ago andeach winter has been the same bang infections hit. This one has been worst todate and within days of stopping ab its flared up again. The only thing i want is a plan to help keep me well over winter without having to take 5 months off work!!! Love judith xxx

  • Hi Judith ,

    So sorry you seem no nearer to getting answers .Like Katie I am particularly confused by the term "simple bronchitis " Do you think he means " acute infections " which only arise during the winter or a more "chronic" cfondition which is there all the time but just flares up during the winter months?

    I'm sure you feel like you are going round in circles after this latest lot of vague information ..As you say you have done everything possible to keep yourself well. I can't begin to imagine your frustration.

    Really really hope you get some proper and more sensible answers next week

    Cheers Coastal

  • Did he tell you why you had that pain in your side

  • No to be honest he thinks its me being "anxious" as he put it. I said well when your normally healthy and fit to be suddenly like this and your gp mentions heart failiure ........i think anyone would be anxious!!! Im down bit today as was up most night coughing so feel yuk but im by no means depressed. I just want a treatment plan for coming winter and after what he says im not to have steroids and only occasional antibiotics well im not overly happy about coming months xxx

  • I would change my GP

  • No its not my gp she is furious too. Its my consultant the second opinion one!!! X

  • We have one like that at our hospital I paid private he said to me you don't look like all my other patients your well dressed he then said he would send me for sleep ap tests and other bloods that was December 13 I had his consulting bill January but no tests with a bit of luck hes got a job with Atos, xx

  • Oh its very annoying isnt it? Oh yes good old atos haha xx thanks for your thoughts

  • If your gp is furious then she needs to tackle this. She is your primary carer and she 'buys' in the specialist help she needs to care for you.

    When you have these winter flare-ups do you have nasty, copious sputum infections? If you do, perhaps you need to have some proper chest physio alongside the antibiotic and steroid. The steroid only calms inflamation and the antibiotic will kill the bacteria, but you still need to get it all out. Otherwise you will just be re-infected. You need to do some form of controlled breathing or used an acapella.

    Also, I assume the gp tells you to put in a sputum sample before starting your antibiotic. This will tell her which bug you are growing and whether the ab she has prescribed is the best.

  • No they dont ask for sample just listen to my chest which is always ok its down on my left lung they can hear the crackles plus thats where i het most of the pain xxx

  • Thanks for that coastal. Not sure what he means he said first visit it was either chronic bronchitis or bronchiectasis. Then idiopathic bronchitis or chronic bronchitis as i have some minor symptoms in summer but can control them with steroids and winter they flare up. Both coincided with my raised liver enzymes which is all inflamation based then i was diagnosed with rheumatoid last april after tests scans etc my rheumy dr said my raised liver was all down to the vast amounts of inflamation in my body and until it was down i couldnt start my meds. It took three lots steroid injections and antiinflamatoris to get it down for july to start meds. I then had a further two injections in dec as along with this lung flare up my hands etc were all sore too. Just feel back to square 1 xxx

  • Sorry tigershay I missed this one when I replied above! Again, I would talk to your gp. She will have a letter from the consultant telling her what his diagnosis is.

  • Hi tigershay, so sorry for your,' needless humiliation', as that's how they make you feel. I'm more interested in your RA. Can I ask which drug you take for it. As a lupus sufferer I have been on methotrexate,( stopped 2 years ago.) like you I was called in for cts & X-rays, with bronchiectasis as the possible problem. Despite my repeated referral to the awful cough and chest infections I had whilst on it, they continued you prescribe it. My last ct scan was with me laying on my front. My rheumy looked up the results at next appt, and said the metho and lupus had damaged my lungs. More the right bottom of mine. When thoracic appt came, he denied the report that my rheumy had read on screen, and said as you were a smoker, it's all down to that. Diag, mild emphysema. These immunosuppressants are bad guys, and can affect your lungs. They have damaged my liver too. Unlike you, I only have lung probs when my lupus is flaring, and steroids are the only reliever. Do you not take pred all the time anyway for RA ? Sorry for going on so much but in my case, I think they have covered up the real cause, incase I wanted to take it further.(which I wouldn't), but like you, something seems amiss.

  • Hi 6161 im on sulfasalazine twice per day and no dont take oral steroids for it only injections of kenalog. Im also concerned that i may have lupus due to rash (mild) but not really being prominent untill last few weeks plus awful ulcers in mouth and nose but to be honest i cant be bothered to raise this as i need to get my lungs sorted priority plus i think they will think im hypercondriac!!! Xxxx judith

  • That is the point of what I am saying. Autoimmune conditions as well as drugs, can inflame your organs. Better control of your RA and lupus sounding condition may help your lungs. My lungs under stethoscope sound perfect at the Drs usually, but when I am flaring they are awful. So sorry for your continued worry, and it don't want to sound as if I agree with cons. I'm in the same limbo.!!!

  • Well will just have to see but it is so frustrating xxx yes i know ra etc can inflame organs but lung dr didnt agree!! No win situation xxx

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