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newly diagnosed bronchietasis, scared!

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david_25160
david_25160

hello, I'm a male aged 60, yes I know I do'nt look a day over 45, thankyou! recent repeated breathlessness for no apparent reason, repeated chest infections prompted firstly a chest xray which perplexingly was "clear" then after repeated visits to my gp finally a ct scan of my lungs showing the bronchietasis, which I had never even heard of! currently taking steroids and co-amoxiclav neither of which appear to help, Ive got a Symbicort inhaler as preventer and Salamol as relief, once again I have to say that neither appear to help at all which alarms me no end! Got an appointment on the 20th with a respiritory consultant so fingers crossed for some relief, Anybody else relate to this please? I'd be delighted to hear from you, thankyou. cheesygrin

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  • reg1945
    reg1945 david_25160

    Posted

    HI  Having been  given an unconfirmed diagnosis of Bronchiectasis seven years ago, still without confirmation  despite repeated requests for confirmation,  i guess if the condition is considered mild in comparison to others, then explainations are of low priority.   anyway ,my question is.    will anyone describe their own  experience regarding the onset of this  disease for them.     For myself it was literally an overnight change. maybe less than that  ,  one minute i could run  and climb  without disability  , the next  such a dramatic change  to  tightness,breathlessness  and instant fatigue,As  a builder i had just prior to this had a fall from considerable height,  and  damaged ribs  and  muscle structure.     it was with this that  asbestosis was discovered   and this whole jigsaw puzzle fell into focus.  years of mal practice with  preservative fluids  atomised by spray  ingested  ,resulting in damaged lung tissue,    double whammy.    ,  how did your experience differ from mine  ,  im really interested to know.     best wishes to everyone        
    • td3
      td3 reg1945

      Posted

      Reg1945--I was recently diagnosed with this, and while it seems to have come on suddenly with fall allergy season and the painting inside my home, I now can look back and see that it was there for some time and I just didn't recognize that anything was wrong.  The fatigue--I attributed to just getting older.  The shortness of breath--my childhood asthma and allergies must be flaring up and/or I must not be working out enough because if I were in better shape I would not be out of breath.  The cold that turned into an upper resp. infection--took me longer to get over it because I'm getting older or I should have went to the doctor sooner.  Clearing my throat because it seemed like there was always something stuck--either postnasal drip or scar tissue from a prior surgery.  You see, I always had some reason for the symptoms.  I had never heard of this, so no reason to suspect it was anything wrong, but the fatigue did worry me.  I wonder if I had not had painters in my home to exacerbate my breathing, if I would still be trucking along not knowing....
    • ruthie2673
      ruthie2673 reg1945

      Posted

      mine appeared to come on relatively out of the blue although i have had asthma since I was a child, had whooping cough and repeated episodes of bronchitis as a child and pneumonia about 15 years ago.

      I just seemed to start a productive cough, so bad that people in the street would tut and say 'you should stop smoking' which was galling as i never had.

      then i got unwell and from then on it took multiple chest infections and worsening of asthma symptoms before I finally got a diagnosis and access to the correct treatment.

  • reg1945
    reg1945 david_25160

    Posted

    ruthie and td3  thanks for your comments to my  question. Seems  the common factor in most cases is an early onset condition in childhood, maybe pneumonia or Asthma<  which is why i cant figure my situation ou,.  no  early trauma of that kind regarding disease apart from  gastro enteritis  in my formative days.  i can only assume  some toxic chemical  related to employment  created damage. resulting in this pesky disease.  moral of this story,  never take the safety of your health for granted.it maybe too late for some of us  but  i want to get the message across to the young.  that being blaise about your health is both wasteful and dangerous.     which="" is="" why="" i="" cant="" figure="" my="" situation="" ou,.=""  no=""  early="" trauma="" of="" that="" kind="" regarding="" disease="" apart="" from=""  gastro="" enteritis=""  in="" my="" formative="" days.=""  i="" can="" only="" assume=""  some="" toxic="" chemical=""  related="" to="" employment=""  created="" damage.="" resulting="" in="" this="" pesky="" disease.=""  moral="" of="" this="" story,=""  never="" take="" the="" safety="" of="" your="" health="" for="" granted.it="" maybe="" too="" late="" for="" some="" of="" us=""  but=""  i="" want="" to="" get="" the="" message="" across="" to="" the="" young.=""  that="" being="" blaise="" about="" your="" health="" is="" both="" wasteful="" and="" dangerous.="">
    • david_25160
      david_25160 reg1945

      Posted

      hey Reg interesting reading all these comments, my bronchiectasis seems to have stemmed from a hiatus hernia allowing the acid reflux back up my throat whilst asleep, and I've inadvertantly inhaled some into my lungs, there is a name for it but it escapes me right now. too true what you say, never take your health for granted, life's too short, and we are a long time dead. respiritory consultant tomorrow for me, let's hope he knows something about this damn disease, caio cheesygrin
  • cynthia61971
    cynthia61971 david_25160

    Posted

    HELLO DAVID....I found this Forum by accident...I had some scar tissue removed a few months ago from my throat...I thought tha would help me..wrong....My ENT doctor gave me the word BRONCHIETASIS on a piece of paper...I have done hours of research...I wheeze and cough a lot..worse when I lie down...I am going to my Pulmonary Doctor in a few weeks for a CT Scan to help find out if that is what I have...pretty sure I do...My ENT Doctor gave me a medicine that really helps break up the Musous...it is called ACETYLCYSTEINE 20% it is a liquid that is used in a nebulizer machine....I do it about 3 times a day...it stinks but boy does it break up the mucous..I stop at least a couple of times to spit into the trash can....it is cheap also...I am so tired of having no energy and short of breath....I am going yo try AZITHROMYCIN...I found a bottle in my drawer that the ENT gave me a few months ago...see if that will work..I do not know how long I should take it...any answers would be wonderful..I think he will renew the RX for me if needed....I so feel everyone's pain...I know I have COPD from living with a smoker for 36 years..but this stuff SUCKS...I have a hard time sleeping...I wake up most nights about 4 or 5 'oclock to Nebulize...this stuff is not easy to deal with...I will check this site often for your updates....Good Luck to Everyone....
    • BookNut
      BookNut cynthia61971

      Posted

      I am using the acytelcysteine in an OTC pill.  No smell...but maybe not as effective.  Still..it works well for me.

      Another suggestion is a plain .9% saline solution.  Sounds like it would not work....but for me it works better than any of the trepaditional asthma meds I have tried.  Also...a flutter valve and breathing exercises are working really well.  Good luck!!

    • cynthia61971
      cynthia61971 BookNut

      Posted

      I just deleted my message by mistake to BookNut...How do you get OTC Pill of Acytelcysteine?? My ENT Doctor wrote RX for the liquid I use in my Nebulizer Machine...I would like to know more about the 9% saline solution please...Can I get it OTC at a pharmacy...?? How do you use it??  I just want my wheezing to stop...but I don't think that is going to happen...I try to be real about this disease...and not have Pity Parties...but sometimes it really gets you down....
    • ruthie2673
      ruthie2673 cynthia61971

      Posted

      Hi Cynthia...sorry cut off mid-text..meant to say...then azythromycin three times a week....Mon, Wed and Fri....250mgms.
    • BookNut
      BookNut cynthia61971

      Posted

      Here is where you can get Sinatrol.  It is expensive. There are cheaper versions available that do not have all the herbals.  I plan to ask my doc if I can go for the cheaper version.  I will let you know what she says.

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • cynthia61971
      cynthia61971 ruthie2673

      Posted

      Hi ruthie...I have Rx from my doctor...just a few months old..I was having throat infections from taking Advair all these years...(yeast infection)...took 3 months to clear up..he changed me to a different antiboitic...so I never used it...then last night I found this forum and saw it mentioned on here several times...I am making an appointment with my Pulamonary doctor this week...The ENT doctor did more for me by giving me rhe Acetylcysteine 20% at least it breaks up the mucous for awhile...I am doing it right now..someone named BookNut said they take a pillof the Acetylcysteine...I have not heard about that through my readings...I am going to ask doctor for test...I think I had a CT Scan less than a year ago...Thanks for your help...
    • cynthia61971
      cynthia61971 ruthie2673

      Posted

      Hi ruthie..why just 3 times a week??  on my RX bottle it says one a day...I am going onto Web MD and read about Azthromycin again..yes mine are 250 mg...
    • cynthia61971
      cynthia61971 BookNut

      Posted

      BookNut...Thanks for the information about Sinatrol...I am going to research it tonight....The Moderator (Emis) removed the link...could you please private message me....if it is not to much trouble....I am learing so much,....Thanks again...
    • cynthia61971
      cynthia61971

      Posted

      ruthie...I went onto Web MD and checked out the antibotic...boy goes it have bad side effects...90% of the 155 people that posted had very severe side effects....i will have to think about this one....
    • BookNut
      BookNut cynthia61971

      Posted

      The moderators removed the link I posted to Amazon as inappropriate.  Have no idea why.  Anyway....you can find Sinotrol pills for sale online, and perhaps i stores that carry a wide variety of vitamins and supplements.
    • cynthia61971
      cynthia61971 BookNut

      Posted

      Thanks BookNut....I am going into Amazon tomorrow to check it out....you have been a lot of help...a lot of info to take in...I am so glad i found this site to help me...it means a lot to me everyone....
    • ruthie2673
      ruthie2673 cynthia61971

      Posted

      Hi Cynthia.......well everything has side effects, but having said that you should not start taking this antibiotic without the relevant tests. Taken three times a week only it is specifically acting as an anti-inflammatory, reducing the mucous secretion and incidence of flare-ups. It is not being used as an antibiotic.

      It is widely used in cystic fibrosis and non-CF bronchiectasis like this. To be honest I've noticed no side effects whatsoever, and I had the ECG and liver function tests which were both normal, but I am taking it under supervision.

    • cynthia61971
      cynthia61971 ruthie2673

      Posted

      Thanks ruthie....I will wait until I see my Pulmonary doctor....I had a terrible night..wheezed so loud I could not sleep...This stuff can be very tiring on the body...
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