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Any new treatments available?

Posted , 9 users are following.

roberto68239
roberto68239

Hello to all. I was wondering if there are new discoveries and treatments for the Bronchiectasis issue. As I posted before, I'm very tired of the problems related with that. Everytime I cough some blood I get so scared that I'm ruining my life.

I would really like to see if there is something we all can do to eradicate this problem.

If I understood welll Bronchiectasis are a part of the bronchial that dilatated keep having infections. What about removing or clogging these parts?

Thank you for all the supporters here. Everytime I posted something, people tried to support me a lot.

2 likes, 14 replies

14 Replies

  • liz164
    liz164 roberto68239

    Posted

    Hi Roberto, I'vd recently completed a trial of a new drug for non-cystic fibrosis bronchiecstasis sufferers.  It is still only in the trial stage and won't be available for quite some time.  Meanwhile I visit Papworth, now reduced to once a year but used to be every 3 months, and keep using my puffers, flutter valve and other medications to keep me going.  Take care and have a good Christmas and a happy and healthy new year.  Lizzy
    • alouette
      alouette liz164

      Posted

      Hi Liz,

      Could you please elaborate on the info you posted here? What kind of drug is that and what does it do? Did you see any good results?

      Also, what is Papworth?

      Thanks

    • liz164
      liz164 alouette

      Posted

      Hi Alouette, the drug or the placebo I was 'testing' was called Pulmaquin.  As I have bronchiecstasis with pseudomonas but am non-cystic fibrosis I was eligible for the drug trial.  I didn't experience any real benefits so we think I was on the placebo but won't know for a while yet until all the results have been analysed.

      Papworth Hospital NHS Trust is the most wonderful hosipital in the World.  It is based at Papworth Everard near Cambridge and they are a world renowned Cardiac and Thoracic Hospital that carries our heart and lung transplants.

  • gary87083
    gary87083 roberto68239

    Posted

    Though I haven't explored all available options, I have yet to find an inhaler or medicine that truly helps me.  Lung clearing is the key for me, and avoiding triggers, like smoke, mold, etc.  BTW, an inversion table has really helped me with clearing.

    Best,

    Gry

  • sue00942
    sue00942 roberto68239

    Posted

    Hi Robert. I was diagnosed with bronchiectasis 4 years ago and was told to go away as i was not bad enough for any help. I have always thought getting in early would be the way to go to at least slow down the progression of the disease. I have become very depressed as though u are just waiting for the various symptoms to progress. I have looked at lots of studies out there. A few appear promisingie gene therayp in the USA but i suppose if that worked well why has it not been a treatment for all? I am the type of person who would have been better not knowing as although my symptoms are mild, the knowledge that i have of the disease is like a death sentance. I dont honestly think i am going to cope when things get worse, although i do give myself a talking to when feeling sorry for myself and think of the poor little children with Cystic fibrosis.  Steve wright on bbc 2 had a girl with cystic fibrosis on the radio. They have identified a gene and trials have commenced of gene therapy which worked really well for her - her lung function went from 60% to 80% in a few months. Am hopeful for them but same treatment wouldnt work for us of course.

     

    • alouette
      alouette sue00942

      Posted

      Sue, you just sound like you're in a bad place right now. Believe me, things are nowhere as grim as you think they are. Forgive me for asking, how old are you. I am only 29 and I have it far worse from you, believe me. I have an incurable strain of bacteria in my lungs and have to be on antibiotics right now. Before having the bacteria, I was always that person who coughs a little and has some lung problems, but my life was pretty much normal. And now, when I have to accept there are a million things I will never be able to do, possibly never have kids or be in a relationship again, believe it or not, I accepted it. To other poeple I look normal, I just have to do my physio and cough everything out every day and I'm good. This all sucks very hard, but there is so much to life, even being extremely limited leaves you with options. And yes, there are far worse diseases that what we have.

      So, don't despair, you will get better (morally, I mean).

    • sue00942
      sue00942 alouette

      Posted

      Thank u so much for your kind words. yes i am in a bad place but i am 59 and now feel awful that u are suffering this at your age. My partner has also been diagnosed with an illness called Primary orthostatic tremor ( a very rare disease) and can only walk so far without falling to the floor, but will not hear of a wheelchair. Pahaps that is compounding the way i am feeling right now. As i said when feeling like this i give myself a talking to as many children have CF (god love them) and at least i have enjoyed my life. Again thank u for your kind words. Can i keep in touch?
    • alouette
      alouette sue00942

      Posted

      Hi Sue, yes, sure, you can keep in touch. I'm not sure what you mean, but you can send me a private message any time or I can even give you my email.
    • HAYDON
      HAYDON sue00942

      Posted

      Hi Sue, have you ot een given an inhaler and shown how to use it? YOu can also do breathing exercuses to help keep your lungs free of rubbish.

      Ask you doc to refer you to a physio to show you how to do the breathing exercises. They will make a big difference to your lung funciton and keep infection down to a minimum.

      The breathing exrcises transformed my life.

    • HAYDON
      HAYDON

      Posted

      Without the typos:

      Hi Sue, have you not been given an inhaler and shown how to use it? You can also do breathing exercises to help keep your lungs free of rubbish.

      Ask you doc to refer you to a physio to show you how to do the breathing exercises. They will make a big difference to your lung funciton and keep infection down to a minimum.

      The breathing exercises transformed my life.

  • pomodoros
    pomodoros roberto68239

    Posted

    Stem Cell treatment for lungs has been around long enough to be taken seriously. It is practised in most countries and the stem cell are taken from the fat in your own tummy and reintroduced to the body intra-veniously. I am very excited by what my months of research have taught me and am going for my first appointment on the 17 February. 

    For us with lungs badly compromised by disease this could be a huge solution to what is now an irreversable diagnosis. 

    • HAYDON
      HAYDON pomodoros

      Posted

      I am an ex BBC film editor. In the late 90s I worked on several documentary programmes about Stem Cells.

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

       

      Stem Cells are now starting to make their way into everday medicine.

      They either use your own Stem Cells or use Embryonic Stem cells.

  • ohara
    ohara roberto68239

    Posted

    How exciting PLEASE let us know how you get on
    • pomodoros
      pomodoros ohara

      Posted

      I will keep you informed of progress. 

      I am 57 and semi permanently on oxygen. My heart beat is mostly 104 and my blood oxygen level settles around 55. I am tired most of the time but keep active. I go out with my portable oxygen system and my sister borrows a wheelchair for me from shopping malls so we can zoom around and get lots done.

      Regardless of the severe condition of both lungs the doctors have said I am a good candidate for the stem cell therapy. 

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