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Bronchiectasis

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Guest
Guest

I have Bronchiectasis and i am only 20 sad i cant except that i have it and i have to leave my job beacuse of it sad i just need someone to talk to who has the same problem as i have cos i dont know anyone who has Bronchiectasis

Thank you Jen x

6 likes, 180 replies

180 Replies

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  • reg1945
    reg1945 Guest

    Posted

    hi jen..  after being diagnosed with asbestosis and    Bronchiectasis  i have found a formular that  has both got rid of my cough  and      serious  periodic infections,,  antibiotics to keep infections at bay  ,but fresh air  and    real exercise  to loosen collected sputum. allows me to lead a normal life with few restictions..   avoiding damp  atmospheres  helps  as does     periodics inhalants of olbus oil  or simply  .steam   deep breathing is essencial to keep   chest free of  infection.. hope this helps         never="" really="" exercised ="" but="" now=""  =""   ="" i=""  ="" cycle="" everywhere ="" and="" swim="" frequently=""  ="" ..="" breathing="" was="" difficult="" at="" first="" but ="" my="" body="" has="" adapted=""  =""  =""   ="" i="" have ="" a="" short="" course="" of="" antibiotics="" to="" keep="" infections="" at="" bay ="" ,but="" fresh="" air ="" and=""   ="" real="" exercise ="" to="" loosen="" collected="" sputum.="" allows="" me="" to="" lead="" a="" normal="" life="" with="" few="" restictions..=""  ="" avoiding="" damp ="" atmospheres ="" helps ="" as="" does=""  =""  ="" periodics="" inhalants="" of="" olbus="" oil ="" or="" simply ="" .steam=""  ="" deep="" breathing="" is="" essencial="" to="" keep=""  ="" chest="" free="" of ="" infection..="" hope="" this="" helps=""  =""  =""  ="">
  • eleena100
    eleena100 Guest

    Posted

    Walking and exercise certainly help. But one must not strain himself / herself.

    Never over exert your self.

    Has any one on this group tried the Vest, Electro Flo and other similar equipments.?

    What is others experience on the use of Mucimax 500 and saline inhalers?

  • sdawoolsey
    sdawoolsey Guest

    Posted

    Hello,

    I was diagnosed with bronchiectasis about 17 years ago. Like some of you, my doctors mis diagnosed me throughout my childhood. During my 30's, I was fine with it & lived my life. But I am finding it is now starting to interfer with my life & I have had to make some major changes.

    Exercise & good diet are a key however it would be nice to meet other people who are dealing with this disease on a daily basis.

    It is scary sometimes when I get tired or sick & don't know what to expect next. I have the greatest doctor but nobody can truly know what's going on in my head or fully understand what I am afraid of next.

    Reading these forums has been interesting, I did not realise so many people suffer from this & I would like to see awareness of bronchiectasis increased because I appear to have suffered this from a childhood injury. Who would have known!

    I am in Sydney Australia & would love to chat with people...............can you image a bronchiectasis illness group who can exericse together? Who else would know & appreciate why we cannot climb hills or talk when exercising...

    Regards, David

    • lesley05714
      lesley05714 sdawoolsey

      Posted

      Hi sdawoolsey,

      I am in England and there is a group, through the physiotherapist, that meet to chat and do exercises together. I think you have to book to belong to it as the numbers are limited.

      Perhaps your doctor may know of a group, or someone who could help start one? There are so many of us with this complaint, and so few GPs who let us suffer, not seeming to know the symptoms. My doctor thought that if the Xray was clear then it couldn't be a lung problem...oops,

      Lots of walking is good, when the weather is fine. I hope you manage to get a group together.

      Kind regards,

      Lesley

  • kevin75637
    kevin75637 Guest

    Posted

    Yeah. With you all the way. I'm 41 years young and been diagnosed the same. Life sucks balls. Im not your average guy. I thought t was invincible. Well, I still am! Denial is not a word per,tinted in my home of wife & 2 daughters
  • lesley05714
    lesley05714 Guest

    Posted

    Hi Kevin,

    Welcome to the forum...and yes, brochiectasis is a challenge that requires study and management of antibiotics; it is a good idea to read some of the letters on this forum to get a picture of the kind of problems that may crop up and how to deal with them. All the best, let us know how you get on,

    Blessings,

    Lesley

  • joy23863
    joy23863 Guest

    Posted

    I have had bronchiectasis for 62 years, it was diagnosed when I was 7 after having whooping cough as a baby. I had a lobedtomy on my right lung but the damage was already done to my left lung, it has holes where the disease is. Postural draining is important to stop the plegm from becoming more infected and not getting over tired. I try to avoid people with colds even babies. It's a tough disease to live with and an understanding partner helps especially when your feeling unwell, all my family suffered when they were growing up but they learnt to live with it and me.having regular check ups and taking antibiotics when you have an infection is vital. I have always tried to live a normal life but it's tough going. Keep as well as you can, eat well and drink plenty of fluids.
    • reg1945
      reg1945 joy23863

      Posted

      hello joy  great to see your post   .. to have  someone spell out  how a long term contract with  bronchiectasis can be managed is an inspiration to those newly diagnosed  ..compered to you  i have had it easy   because my  disease is in the early stages and relatively mild, so at  69 i feel  kinda lucky  at its late onset   even though  similar to yourself  i have endured major surgery on lungs and pleura through asbestosis..... although at times very debilitatiing. it can be controlled in the ways you describe  and most can lead a relatively normal life       good luck to you,         
  • joy23863
    joy23863 Guest

    Posted

    Thanks reg but never under estimate how hard it is to live with, lungs don't like being handled so the surgery would have made your lungs irritable like mine and causes asthma, I was on a nebuliser for years taking salbutamol through it until a chest consultant told me it would make it worse and I would be less wheezy not taking it, how right she was I don't wheeze and I sleep all night without coughing, first time for years that I now sleep a whole night through. Take care of yourself and do your best to keep well, I admire you
    • reg1945
      reg1945 joy23863

      Posted

      nice to read this kind of comment   ..positivity is part of the process of dealing with  this illness. I have just returned from a 5 mile walk in the most beautiful countryside feeling rejuvenated,    .Iam convinced that  good quality sleep   .  sometimes rigorous exercise.... can alleviate much of the symptoms associated with  pulmanary problems . and obseving the golden rule of avoiding those conditions that may exacerbate  and promote a downward trend in your condition..  good luck  and be as well as you can to all those sufferers reading this and take heart.   it can be controlled  
  • Kathleen1952
    Kathleen1952 Guest

    Posted

    i have had bronchiectasis since i was 7 i am now 64 i have had a full working life till last year i am under a consultant but my main problem is clearing mucus even with my exercises carbocistene i use a prophaltic antibiotic as infwction do re occur  can cope with it during the day but night time is the worst as i am unable to sleep any ideas would be welcome

    Although my husband and family are very supportive its hard for them to understand the condition and the regime i have to go through exercise is a problem as i have mobility problems as well it is so good to be able to talk to people who share this condition as they know the problems, despite having this condition i survived open heart surgery so i feel very sorry for jen who feels it will ruin her life i have had 2 children and am now a grand mother so ther is a life with this condition just dont let it beat you . mine came feon double pneumonia which was an after effect of measles as ther were no vaccinations in 1957

  • sdawoolsey
    sdawoolsey Guest

    Posted

    Hi there,

    My name is David and, after being quite ill throughout  my youth, I was disagnosed with bronchiectasis when I was 30. It was linked to having pneumonnia when I was an infant (from child abuse) & I was told I'd need a double lung transplant by age 35.

    Does anyonoe use a 'Flutter Valve' or heard of one? This is a small instrument you breath into, which will shake any mucus loose allowing you to cough up more easily. This can be used in addition to posutral drainage.

    I believe exerice, a healthy diet & remaining positive are important keys to managing this illnethess. Yes bronchiectasis sucks eggs but I always think that there is someone out there worse off than me.

    I know exercise is not easy for some but I think there has to be ways fot it to work, at some level. I walk 30 minutes per day and visit the gym for light weight training 2 or 3 times per week. I would never have believed walking would be important but, after doing this for 12 months now, the results speak for themself. I sleep easier, I breath easier & my cardio has improved.

    Granted it is different for everyone with bronchiectasis but we have no choice but to find what works for us. It is great to read comments from people aged 50+ because that gives me hope, I was initially told I'd be dead by 40 but I am 50 in April and I plan on living until I am 80!

    Guest, I can understand how frightening this is for you at age 20 but I hope some positive comments from this forum help you somewhat. You must find a specialist who can help you manage this disease.

    • lesley05714
      lesley05714 sdawoolsey

      Posted

      Hi, well I am in my 70s, and doing quite well...I have tried the flutter but find that half an hour on my back after lunch moves things around and gets rid of the mucus better than the flutter.

      I just pace myself, did an MA recently, looking forward to some good weather as I can't really trust my lungs out walking in the cold. Although I do go out in the car shopping etc.

      Blessings,

      Lesley

    • jojo40
      jojo40 sdawoolsey

      Posted

      good morning to everybody on here and i hope you're feeling well i've just been reading people's comments and i just want to say in my experience acapella flutter i don't find very good i tried to do it on my own just with the drains but i have heard this weekend that there is a new machine that has been brought out 4 people with bronchiectasis the name of it Is aerosure medic breathe easier. it is expensive i think around £179.but i think if it works i'm people find it hard to bring up mucus and it's worth every penny i am going to see my consultant this friday and i'm going to ask her if she's gotten opinion on it does anybody else know about this machine i have read the writer ups and they all seem very positive just wondering if anybody else has one anyway i think you're all very positive on hear and thank you how you all gave me hope and surport .
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