New to Bronchiectasis - so many questions

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Hi,

I am in Florida, USA. I am 48. I was diagnosed 3 weeks ago but the one thing I cannot seem to find is how do you know how severe it is?

Went doctor he told me hospital missed it 16 months ago on a CT scan and that it was not life threatening. Everything else I have learned has been here. Called doctor's office about the fatigue and nurse said I most likely have sleep apnea. Don't see doctor until December. Then I read here that fatigue is a common symptom. So why didn't doctor's office know this??  I am beginning to think I need to find a new one and I haven't even seen him twice. 

Have so many questions but don't know who to ask and/or who to trust.  How do you know if it is cystic fibrosis or non cystic fibrosis? Did they check babies 48 years ago?  He didn't order any tests or another CT see if it was worse or same? So how do you know how to treat? Very depressing and frustrating.sad

Thanks for any input/help/advise/support!

Mary Ann

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13 Replies

  • Posted

    Not sure how the US system works. But a CT scan should give your doctor an idea of the severity of the disease together with your symptoms.

    You need a good chest specialist who has a special interest in bronchiectasis. Treatment consists of daily Chest physio exercises and the appropriate antibiotic in high dosage when necessary.

    In the UK you would usually be managed by seeing a hospital specialist every 6 months or so and your General Practitioner in between. Ideally you would be taught the physio exercises at diagnosis and your sputum tested to see what your standby antibiotic should be.

    It is not as bad as it seems and can be managed if you get sufficient support from your medical carers.

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    • Posted

      Thanks Katherine!

      I have decided to get a second opinion to comfort my mind.  This second doctor is already ordering tests which the first didn't even do. So whether the results are the same or not I think this second doctor will ease my worries.  I have a CT scan and another pulmonary test scheduled for Monday.

      Thank you for responding to my discussion.  I have yet to find a place like this on the US sites.

      Thank you !

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  • Posted

    Glad you are sounding more positive. There are certain rare conditions that need to be excluded with blood tests so I guess that is happening now. 

    Good luck with it all...

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  • Posted

    Hi Mary Ann, I'm really sorry to read that you are yet another sufferer of the awful disease. First of all, Bronch is a VERY serious illness and anyone who tells you otherwise is totally ill-informed. 

    The fact that you are fifty eight tells me that you have had the disease for a long time probably as a result of a childhood illness like measles or pneumonia. Bronch was once seen as an 'orphan' disease ie., lost in the mists of time and probably misdiagnosed. Fortunately doctors are finding out that far from it being obscure or outdated, it is much more prevalent in the general population than perviously thought. This new approach is encouraging new research and new treatments.

    When you think about it, your lungs are damaged and there is lots of puss and other things lurking usually in the base of them so it is no surprise that you are feeling tired and quite unwell. The suggestion in the absence of further investigation that you have sleep apnea is ridiculous. I'd take what this woman says with a pinch of salt in future and you should limit your contact with her apart from bloods and minor tests. You pay for your treatment in the US so there is no need to put up with misdiagonosis or shoddy treatment.

    At your age, it is virtually certain that your bronch is not caused by CF, you'd have been considerably more ill over the years and to be frank, living to 48 would be quite an achievement!

    I suspect the very humid climate in Florida will not be helping things so I would make sure the aircon is switched on and the dehumidifier settings on high.

    Please take care of yourself and know that you are not alone.

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    • Posted

      Hi, Supercough

      Thanks for the support! Hanging out at the hotel until my appointment with a specialist. Have read so many things on the web and yes more research is being done. And will definitely stay away from that nurse and/or doctor.

      I have read research in Canada where it is being advise to test for cystic fibrosis in older patients. There is something called mild and/or atypical cystic fibrosis where the gene is mutation and symptoms are milder than full blown cystic fibrosis.

      I dont know how doctors keep up with what is what. So many have the same symptoms.

      I just want to have a day where I dont cough my head off. i guess if something was coming up I'd be somewhat better with it but this dry hackeystuff stinks. Saw mulanku honey lozengers that another person in another discussion mentioned but I will wait to see how things go today.

      I am glad i have all of you for support and to listen and talk to.It is lonely when folks here have no reference. Still waiting on my husband to realize it....maybe after today since he will actually be with me and hear everything doctor says.

      thanks again!!!!!

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  • Posted

    Oh does anyone also have issues with hoase voice? I sound like a frog to me and if I talk alot I start to lose my voice. the two weeks i was on antibiotics voice was okay but since the 14days the hoaseness seems to be getting worse.
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  • Posted

    Interesting appointment. Bronch specialist believes all my coughing is due to sinus issues and not bronchiectasis because it is a dry cough and I am not coughing anything up and have had no lung infections. However I am suppose to get ahold of my lung CT from April 2013 (even though I was told not to bring anything older than 6months when I made the appointment) and bring it at my next appointment in 6 months - March 2015.

    However he does want me to see their Ear,Nose and Throat doctor (ENT). So I guess I will be traveling to doctor again. In the meantime I have a stronger inhaler, stay on the two nasal sprays and omeprazole. At least I was told I should feel better in 6 weeks. I hope so because 6 weeks will be November which means I will have coughed most of the year for "nasal drip" p*ss poor medical care!!!! Not very confident in medical folks in my hometown right now!

    But very thankful I found this site for next year's appointment and if even these doctors are wrong too!

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  • Posted

    I have had this disease for over 40 yrs and now my voice is gradually getting softer so that I think I am talking loud enough but people tell me to speak up.  Does anyone else have this problem
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  • Posted

    Hi. I was diagnosed 3 years ago and was as good as told to go away as it is "hardly there". I have looked on websites and am also confused as some of the symptoms i experience (pale skin, and cyanosis) are given as moderate, yet i am only just starting to retain mucuc.
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  • Posted

    Hi Mary Ann. I had a simply sweat test to see if I had cystic fibrosis thankfully came back clear, I have bronchiectasis and have had it for over 60 years, i had a right lung lobectomy when I was 7 but it didn't stop it from spreading.your hoarseness may be due to acid reflux, the acid could also be causing your lung infections, something to look into. Not all doctors have the answers and I have found these forums helpful and self help also. I hope your beginning to feel better now. 
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  • Posted

    Hi get on the Internet and find the best consultant that knows about bronc. Travel if you have to and make sure he/she has your scans. Any good consultant will tell you where you have it in your lungs and how bad it is. I was diagnosed with it ten years ago in the UK when I had two bouts of flue. I took no notice of diagnosis and didnt have a problem for 5 years when it flared up. I was given more scans and a different consultant said there was nothing wrong with me. Paid to see top man at royal brompton hospital and he confirmed the size and position of the damage on wvery scan I ever had!! You have to see the best consultant you can. They should offer you advice and Physio which you need to do regularly and energy antibiotics and then apart from staying away from people with infections, dust and smoke you carry on living your life. Good luck.
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