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Scared!

Posted , 5 users are following.

trish40354
trish40354

I was diagnosed with bronchiectasis in May 2015.  My chest consultant gave me the news, a leaflet and advised me to look at the internet as it had lots of info, he would see me in 6 months! My chat with consultant was rushed as he needed to see the next patient.  I was told I needed physio, looks like a 9 week wait for this.  I did look at the internet and scared myself silly.   I am trying to take this all in and doing what I can to keep well.  I have breathing issues, cough very little, but am tired all the time. I am thinking of getting a "flutter device" to try and shift things.  On a positive note, this site has so much info and is my go to comfort blanket!  So thank you to you all.      

1 like, 16 replies

16 Replies

  • dancing_queen
    dancing_queen trish40354

    Posted

    Don't get too down with the diagnosis. Yes, you will have bad days but you will also have lots of good days (more so, hopefully). Please don't panic. You will learn to understand your body and the flutter will help enormously. People won't always understand how you feel because you look the same to them, but there is a lot of us out here who do understand, share your concerns, and will try to support you. One of the best things is to have more positive thoughts and try not to let this condition take over your life.
    • trish40354
      trish40354 dancing_queen

      Posted

      Thank you so much, you are right I need to take control in whatever way I can . . . .  think after the diagnosis I just went into panic mode and felt scared of what was happening.  I will give myself a good talking too and be as positive as I can.  Apparently I cannot get the flutter device on prescription so will have to look at where to buy one from? I did get myself a salt pot and have started using this daily, must admit no help yet but early days. Have been trying to drink more, water that is, but finding it difficult to drink the 2 litres required.
    • cofalot
      cofalot trish40354

      Posted

      Hi Trish

      I am new to this site but have had bronchiectasis since babyhood - also have asthma and inflam arhtritis.

      Doesn't sound like a very good intitial consultation - hope this improves next time.

      Not sure who told you you could not get the flutter on prescription because you have been able to for some time now, although GPs don't seem to be up to speed on this.  You can also now get the acapella on prescription.  There is only one company, as far as I can gather and they use electronic prescriptions - they send them to your GP and continue to do so every 6 months.  I am away for a few days but will try look up the paperwork when I get back.  Meantime you could ask you pharmacist as I believe they too order through this company.

      cofalot x

    • trish40354
      trish40354 cofalot

      Posted

      Hi cofalot,

      Very interesting info in your reply to me.  I was told I could get acapella on prescription then the problems started!  My GP had never heard of it, his Practice Manager was contacted by Respiratory Nurse, who requested I should be provided with a device.  Apparently a big meeting was held with Respiratory Dept at my local hospital, Physiotherapy Dept again my local hospital, my GP also and some big wig in charge of funding.  It came down to the fact no one wanted to have it come out of their budget and it was apparently coded "Red Red" which meant it  could not be prescribed on prescription.  They will look at this issue in the future but too far down the line for me!  I was told I would have to buy myself.

      It would be great if you could find me info so at least I could have another go at getting one!

      Enjoy your few days away, and thank you again for replying. 

    • cofalot
      cofalot trish40354

      Posted

      OMG it must have cost more than the flutter and the acapella put together for all these meetings!  Rediculous.

      Is there any way I can pm you on this site - I can't see this facilty at all.  Also there does not seem to be a way to lock a post to the community only.  Not quite sure if I am sticking around - not sure how to delete my account if I decide to go.  I am a member of a couple of sites I find easier to use.

      As I say I am more than happy to send a pm with this info if it is possible.

      Love cofalot

  • susan71068
    susan71068 trish40354

    Posted

    Trishaws, I understand you are frightened but stay calm and you will deal with it better, the internet is fantastic as I'm always checking things out myself but sometimes it can be alarming. My husband suffers with this, he also has COPD, TB for the 2nd time too. He has deteriated the past 6 months and our future dosent look good, don't be alarmed as my husband has lots of lung problems compared to you, I don't mean that in a sarcastic way, just want you to understand his problems are more than yours and I don't want to alarm you. He now has a bacteria called Pseudonomas which is so difficult to treat, it can't be eliminated. He now has Colomycin through his nebuliser, the plan is for 3 months and it will dampen it down, no Guaruntees sadly ! I did buy him a flutter device from Amazon, about £12 it was. Not used it yet as slightly wary as I've read it takes a lot of effort to use and he is already breathless all the time, so worried it may make it worse. I wish you well and stay with this site as you really do find such good info. Hope this helps you.
    • trish40354
      trish40354 susan71068

      Posted

      Thank you Susan.  I do hope things improve for your husband, it must be such a worry for you both.  I will look at buying a flutter device and hope I have the necessary "puff" to make it work!  This site is brilliant and its good to share things with others going thro this every day.   
  • Operalyn
    Operalyn trish40354

    Posted

    Trish don't worry too much.  I have had bronchiectasis all my life and reached the ripe old age of 67 and whose counting!  I have pseudomonas too - and couldn't use colomycin because I reacted badly to it.  I'm still here!  The physio can really help you a lot and I can't believe you have to wait so long.  Keep as positive as you can - go and see your GP if you have any worries at all.  Our practice has a COPD nurse who sees me once a year and she offers all sorts of useful help.  Find out if you have one at your practice maybe?

    Anyway.  Take care of yourself.  You will get tired.  I am so used to being tired that I have forgotten what it is like not to be!  However, if you rest enough, drink enough water, do what the medics tell you, then hopefully you will be fine.  Don't frighten yourself with the Internet either in spite of your consultant.  You can read some excellent things but there is a lot of scary stuff out there which is not necessarily authenticated by anybody.

    Take care of yourself.

    • trish40354
      trish40354 Operalyn

      Posted

      Hi, thanks for your positive reply containing helpful info.  Yes, its a long time to wait for physio, but they have a backlog of patients and I am in the queue! My Doctor says I am the only patient in his practice who has this condition and he didn't have a clue what a "flutter device" was.  I will see if they have a respiratory nurse in the surgery.  I have also found details of a local "breathe easy" group which meets once month. Perhaps I should go.   You are right about the internet, lots of good stuff but also some frightening articles I wish I had not read lol!   
    • susan71068
      susan71068 Operalyn

      Posted

      Hello Operalyn, I'm interested to see you too have pseudomonas, what a nasty bacteria it is. My husband is currently using Nebulised Colomycin we are 2 weeks into what will be  a 3month course. He had the challenge test was ok with it, having said that the last 2days have been pretty awful for him, just wiped out really, no energy, sleeping a lot, no appetite, etc. he was freezing cold on a day like today, I took his temp and it was 38.1. I have rung GP and waiting to hear back from him as out on visits. Were you affected this way with Colomycin ? Can I ask which antibiotic is being used to treat your Pseudonomas bacteria and how long you have had it ? Any ideas how you picked it up, not a clue how my husband contracted it although I beleive it can be picked up in hospital and sadly he has had 4  or 5 admissions so far this year. Sorry for all the questions, just need some guidance at times as I feel I'm not seeing the wood for the trees, seem to get one thing sorted with him and another one crops up. Thankyou in advance. sue
  • sue00942
    sue00942 trish40354

    Posted

    Hi Trish. I was diagnosed 4 years ago. Its awful when u get this news, and look everywhere for information on the conditon. I am still confused, am told it is mild, but experienced cynosis and pale complexion for the last 4 years, so i dont now know what stage im at. Some days im ok, but often get really depressed. Have just bought a salt inhaler and so far this is drying up the gunk at the back of my throat. Constantly look for medical research into the condition and praying some breakthrough will be possible before it gets too bad.Then i feel really guilty as its related to Cystic firbrosis and there are young children who have this, so i tell myself i have a lot to be thankful for., but feel like I have just got to wait for this to deteriorate.
    • trish40354
      trish40354 sue00942

      Posted

      Hi Sue

      I am new to all this, so probably can't help you very much.  I would just say, for me, taking as much control of this horrible condition as I can does make me feel I am doing something!  I don't know if I am mild, moderate or what as noone has actually said! The depression thing is understandable and I hope you have more good days than "wobbly" ones.  Great things are happening in the medical world every day so there is hope for us.  Just got to look after ourselves, be kind to ourselves and make the most of our "good" days.  I am sending positive thoughts to you. 

    • susan71068
      susan71068 trish40354

      Posted

      You seem to have a positive attitude which is really good. Maybe you need the medics to tell you exactly where you are to help you deal with it. Thanks for your best wishes and I hope you get the answers you need. Thoughts are with everyone x
  • Operalyn
    Operalyn trish40354

    Posted

    Hello Sue  - sorry you are so worried as well.  I am starting to feel like everybody's bronchiectasis auntie!  I know only too well how poorly you can feel with this complaint but no need to panic.  If you have mild bronchiectasis it is just as likely to stabilise as to get worse.  I have had no chance in my symptoms for years and my lung function tests at the hospital are almost always the same.  The professor at the Brompton Hospital who I saw in the first place told me there is every reason to suppose I will live to a ripe old age.  That may be true for you too.  The trouble is that bronchiectasis is basically damage to the lungs caused by something else.  There are lots of causes - mine was childhood measles.  That means it is never going to get better because the damage has been done. However, there is no reason to suppose it will get worse either. Take each day as it comes.  That's what I do.  I swear by my daily physiotherapy - i.e. postural drainage.  There are sites on YouTube that tell you how to do that but it's no substitute for proper information from a physiotherapist. 

    I am starting to realise how lucky I am.  I had bronchiectasis as a child when it was relatively common.  I had a bad patch in my thirties and was sent by my GP to the Brompton which is probably the best chest hospital in Europe.  I have landed on my feet with my GP practice here in Worcestershire too.  So much depends on the support you get.  I really manage my own complaint now with antibiotics permanently on hand to take when a chest infection rears its head.  That and my physio and a daily dose of Monteleukast (I suffer from allergic symptoms too - a spot of asthma and some sinusitis) and I keep the show on the road.  Some days are not good and if I get a virus I always feel really rough but most of the time I get by pretty well.

    • trish40354
      trish40354 Operalyn

      Posted

      So much great info thank you Operalyn.  My bronchiectasis came about after suffering numerous chest infections, chronic sinusitis and a bout of pneumonia.  My doc just kept giving me antibiotics and a chest xray, which always showed nothing wrong! Luckily I saw a newly qualified doc last time I went and he was on my case immediately referring me to a chest consultant for tests as he suspected bronchiectasis.  I shall be pleased to see a physiotherapist so I can be more proactive in managing this "thing". Its good to have a "bronchieactasis auntie", thank you.
    • susan71068
      susan71068 Operalyn

      Posted

      Thank you for your reply, very helpfull, it's actually my husband not me.im very interested in postural drainage and intend to check it out, many thanks, stay well x
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