Bronchiectasis - the good and the bad

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I had never heard of bronchiectasis until I was diagnosed as having the disease in both lungs at the ripe old age of 51. The consultant was very good and explained what the disease was and then dropped the bombshell that there was no cure!

However he went on to say that it was treatable and I have been on a regular regime of steroid inhaler, daily postural drainage, physiotherapy and oxgen therapy ever since i.e. for the last four years.

In addition to this he has also placed me on a short three day course of anti-biotics every month for life, to help minimise the risk of chest infections.

Whilst I still get breathless during exercise and still cough a lot and still tire easily, I am far less prone to infections than I used to be.

The thing I have found most annoying is the attitude expressed in some quarters towards bronchiectasis. For example I have seen it described on some web sites as just a 'embarassing' disease because of the phlegm coughed up. To those of us who suffer from the disease it is far more than this. It is dibilitating and can have a major impact on our quality of life.

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  • Posted

    Hi Paul,

    I am sorry that you were diagnosed with Bronchiectasis. But you seem to be managing it extremely well. I too am on antibiotics for three days a week (Azithromycin). Unfortunately I haven't been able to trial it properly yet because since December, members of my family keep bringing home colds and I keep catching them. But I can give if a fair trial during the summer months.

    I was talking to someone at the British Lung Foundation the other day and we were saying exactly what you have said. Mention Emphasema or asthma and people nod and know what you are talking about. Mention bronchiectasis and they look at you blankly. Most people think it is just a bad bout of bronchitis they don't realise it is a chronic lung disease which does alter out quality of life.

    I cannot doe postural drainage because of the damage to my lungs, but I do have oxygen. How often do you use your oxygen or are you on it all the time?

    Take care

    Tessa

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  • Posted

    Hi Tessa

    Sorry to hear your family keep sharing their colds with you! But hey that's familys for you! They always want to share things with you, good and bad!

    Seriously though I hope you start to benefit from the anti-biotics! It must have been terrible for you to have been diagnosed with bronchiectasis at such a young age?

    I'm not on oxygen all the time no, I just use it when I need to. I have a machine in the house which I use about three to four hours a day and I also have a small portable cylinder which I can carry around with me when I go out for a walk as I find I get quite breathless during any kind of exercise.

    It's a pity you can't do postural drainage as I find that really helps with clearing some of the 'gunk' from my lungs.

    I really do hope the anti-biotics help and that you improve a little during the summer but whatever happens always remeber to keep your pecker up.

    Look after yourself and keep smiling.

    Paul

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  • Posted

    omg i need help i`m 37 years old and was diagnosed with mild bronchiectasis four years ago unfortunately i`m so ashamed that i have smoked pot for the last twenty two years and i`m fighting a constant battle with myself to give it up before i do more damage ...any words of advice or encouragement would be deeply appreciated and might just save my life !
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    • Posted

      I have the same problem I am 22 years old I have smoked pot since I have been 15 - I loved smoking and got diagnosed with this 2 years ago  I have carried on until recently I have cut down a lot because of my job but my boyfriend and bestfriend smoke and my best friends from my home town who I grew smoking with and everytime im with them I end up smoking saying its the last time I always think it will be. Im scared everyday im going to grow enphasimia or COPD or cancer if I carry on but really struggling with cutting all together and scared for my life too. Im just glad to know others are struggling with this did u find a way to help the temptation?
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    • Posted

      Hi Charlotte,  I didn't smoke pot but I smoked cigarettes from 16 yrs until I was 35.  I got horrible pharyngitis which is simply an infection of the pharynx deep in the throat and it's terribly sore.  At 35 I thought OMG what if I had cancer of the throat, wouldn't that be awful and it can be avoided just by quitting.  The pain was so bad probably like strep or worse.  When u are sick like that you can't smoke so I was off cigarettes for maybe 2 wks.  AND I JUST NEVER STARTED AGAIN.  It was that easy for me.  Keep telling yourself that you CAN get emphysema or throat cancer or possibly worse from smoking!  Do you think you could quit your pot smoking by imagining yourself getting very ill?  Emphysema you talk about develops over time as part of COPD, not narrowing of the airways but something to do with the cells inside your lungs making it real hard to get air out or breathe in.  I don't have that but it's not something I want to get.  I'm so glad I quit smoking when I did and that was many years ago.  I do hope you can find the strength to just say no to the pot and maybe convince your boyfriend it would benefit your health if he could quit too.  Or can you convince yourself to not hang out with your old friends because you need to look after yourself first and foremost?  Does the patch work for quitting pot smoking like it does for cigarettes?
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    • Posted

      I have smoked cannabis daily fof 50 years and along the way, i have developed bronchiectasis. I am very familiar wkth this disease as I had an aunt who succumbed to the disease back in the 70s. She was a no-smoker but had several bouts of pneumonia throughout hef life. While I personally witnessed the ravages the disease had on hef health, and it is very likely I too will succumb to it eventually, my life-long psychological dependency on pot prevents me from stopping. "Live by the sword, ..." etc.

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  • Posted

    If pot is the same sort of addiction as like nicotine then you could try some new tablets that havent long come out.Not sure the exact name but think its someting like \"champix??\". Ihave heard some good reports.Failing that...... try ALLEN CARR book- the easy way to quit smoking\" its absolutely a must for brainwashing your mind that any type of smoking is horrid! Last of all use your will power its the probably the best way and its free! GOOD LUCK
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  • Posted

    Hello Gooner 37

    I had to give up smoking pot because of Bronchiectasis about 30 years ago. You can still enjoy it though by eating it. This might make it easier for you to stop smoking.

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  • Posted

    hey...just thought id share my problems too..i also have bronchiectasis, was diagnosed a few months ago, im 20 years old, and ive had this problem since i was about 12. im not taking the extra oxygen, nor the 3days antibiotics. i did a 2wk course of strong ones, i didnt cough once for 4weeks but now its started up again, even worse this time!

    its terrible i have exams now, and im constantly distrubing everyone and myself in these exams.

    not many people know what it is, and always assume im just ill all the time. i hate that.

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  • Posted

    Hello, I must say you right about having BX I have read alot on this Forum about peoplle saying you can still have a good quality of life how can that be when you cough and spit every 15 to 30 mins every day,and they say I have Mild BX well I feel real bad for all those that have it worst I can't imagine what you all must be going through,SORRY !

    I.m going on 3 years now with this,using Nebulizer with Sodium Chloride,followed with Albuterol and of course Inhalers plus trying A;ternative Meds also,but I must saying this forum has helped more then any of these doctors.

    Is there ant doctors that anyone knows of who has BX ? that would be a great help to hear from HE or She,

    Amazing that we can put a vehicle on MARS and can't find cures for our bodies,but of course cancer is a $300 Billion a year biusiness what would happen if they found a cure ! and with DNA & Gene studies there has to be a gene we could put through the neblizer which could beat this BX,I should also say I'm sure they are trying,so we wait and cough i the mean time.

    Also wondering if any one has this new machine for COPD called Airnenergy made in Germany if it works for BX also got to be worth a try,Please Advise.

    Best Regards,

    Charlie

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    • Posted

      Charles,

      I agree, why can't the medical field find a cure for this miserable condition.

      I think one reason is because most doctors misdiagnose the illness as asthma or copd (like me), The difference is that with brochiectasis there is the added weakness of the walls of the airways that doctors overlook (a CT is needed). More and more people are diaginosed correctly in the pass few years and there are specialists in that field now.

      I live in the states and at the end of December, I had stem cell treatment for my lungs.  They take some of my blood and bone marrow and remove the stem cells and reintroduce them into my system, The stem cells migrate to the damaged tissues in my lungs and start to repare the damage. I have since take meds to help the process. I won't be able to tell for about 3-5 months. It should help with inflammation and improve lung function. It won't help with the weakness of the airways.  So the medical field is taking notice.

      I think that if it was my grandparents time, chances are most of us with this illness wouldn't have lived this long (I'm 66).

      I have not heard of this Airnenergy machine.

      Stay healthy, Beth

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    • Posted

      Hi Beth. 

      Have you noticed any changes at all since your stem cell treatment?

      I had my first consultation appointment for this same cell treatment and really need to know if it will be big money well spent. Any comments will help.

      Well done brave lady

      Janine

       

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    • Posted

      I had it done in late December, they said it would take 3-4 months to notice an improvement.

      My goal ths winter season is not to have a bronchoscopy.  For the previous two years I have had to have numerous ones (last year winter season alone was 5). 

      I did have to be admitted into the hospital for a short stay this past Sept and in Oct. Had a touch of pneumonia. In November, I came across this website forum. I learn alot, like taking Manuka Honey and turmeric everyday and had the doctor put me on a low dosage long term antibiotic.

      Since then, I have had to go to the ER once, in early Feb, because of shortness of breath, due to the change of climate (we had just come back from a month in a warmer climate).

      I still have an issues with shortness of breath on a daily basis, and am hoping that this treatment will help with improvement of lung function.

      At this point, I can't say if the treatment is worth the money, but both my husband and I felt that we needed to try it, if nothing more than to slow down the progess of this illness.

      I'll keep everyone posted, Beth

       

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    • Posted

      Interetsed to hear how your Stem Cell treatment goes.

      I have edited a few programmes on Stem Cells for the BBC.

      We had a lady who had been in a wheelchair for five years walk again after Stem Cell treatment.

      As you know you can use your own Stem Cells or sometimes they will use Embryonic Stem Cells.

      They started trailling them in the late 90s.

      Now they are starting to make their way into everyday medicine.

      Look forward to reading your sollow up postings. 

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    • Posted

      With this treatment, they use my own stem cells.  It's been 2 months since I had the treatment, so this spring, I'm hoping to see an improvement.
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    • Posted

      Elizabeth,  I hope this works for you and can't wait to hear the results. My mother was diagnosed with bronchiecstatis and pulmonary fibrosis about 18 months ago.  We are hoping that she will qualify for the stem cell treatment at the Lung Institute in Pittsburgh and this will bring her some relief.  May I ask where you had your treatment?  And, hopefully you won't object to my remembering you in our prayers and that you see some positive results!
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    • Posted

      Terri,

      I had my treatment in late December at the Nashville clinic.  I was treated very professionally. I opted for the more aggressive treatment, the additional use of my bone marrow, which was $3,500 more. I'm also taking the recommended meds to help the growth of the stem cells.

      We've had a mild winter, I don't know if that a factor, but I have been doing better, compared to last year at this time.

      We are moving 400 miles, to be closer to our daughters, at the end of this month. I'm hoping my health won't intervere with the move.

      I hate not knowing how I'll be feeling at any given time in the future.

      Keep in touch, Elizabeth

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    • Posted

      Thanks, Elizabeth.  My mother will be going to the Pittsburgh clinic.  So far they have been great as have the folks here in Tampa where I live (my parents live in WV).  I look forward to good news on your front. I can't imagine the uncertainity. Praying that your health improves and that you will move smoothly and easily! 
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    • Posted

      Pomodoros,

      I came across this for some reason. It was posted a year ago.

      Since I've had the stem cell treatment (Dec 2015), I have moved to a better air quality area (April 2016).

      And for the past 5 months I have felt the best. I haven't had a hospital stay or bronchoscopy since the treatment.

      My breathing tests have improved over the past year, my specialist said 2 months ago, that I'm amost to the normal person range. I have very little shortness of breath. And I have been able to decrease my predinsone and nebulizer treatments.

      And I walk and exercise regularly. In April, we were in Ireland when we both got a cold that was going around the tour bus. We stopped at a chemist and she gave us meds that really helped. When we got back to the states, I still didn't feel 100%, so my doctor put me on antibiotics. That was all it took. Two years plus ago, it would have gone into pneumonia and I would have ended up in the hospital.

      So those are the facts, Beth

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