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how i cope with bronchiectasis

Posted , 9 users are following.

amanda36284
amanda36284

Hi all ive been suffering with the illness since the age of 10, im now 42, its on both of my lungs, i had  just over half my left lung removed in 1991,Im on nebuliser and tablet antibiotics, inhalers,the advice i can give to others is take up light exercise, drink plenty of water, try eat healthy if u can,in the early days i was really ill with it, but ive had so long now i know when to rest, it does knock the stuffing out of u, i live with a wheeze everyday but seems worse when i have an infection, only certain antibiotics help depending on what type of infection, plz feel free to reply id love to hear from u all takecare

6 likes, 26 replies

26 Replies

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  • trish40354
    trish40354 amanda36284

    Posted

    Hi Amanda

    I am new to bronchiectasis and your  advice is so positive, so thank you.  It has taken me a while to get my head round this disease, and I count myself as very lucky as usually suffer with minor symptoms. Although,   I have been suffering more in the hot and humid weather .... as have most I expect? 

    So all advice is welcome, and I am learning new stuff every day. 

    Take care x

     

    • amanda36284
      amanda36284 trish40354

      Posted

      hi trish

      hope you dont mind me asking how long u have been suffering with it , i find seasons can cause diffrent symptoms,i was having trouble with  light headedness and my breathing. i started with panic attacks im doing ok just coping day to day if there anything you need to know and i can help please feel free to contact me x

    • trish40354
      trish40354 amanda36284

      Posted

      Hi Amanda

      I was diagnosed in May 2015 but had been suffering for several years with many  chest infections, sinus problems etc my GP prescribed antibiotics plus several chest xrays, which were all clear.  I was quite poorly Sept 2014 to March 2015 just couldn't clear my chest and luckily I saw a temp GP at my surgery who sent me to chest consultant.  I also suffer with "overbreathing" and am trying to sort that out as it makes me lightheaded.

      I am thinking of going back to the gym again.  I gave this up a while ago as couldn't cope as got out of breath too quickly!  I too think exercise is good, so do try and do a little something every day.   

      Panic attacks are horrible, so I am pleased you are doing ok.

      Thanks ..... will chat again x

  • John_N_B
    John_N_B amanda36284

    Posted

    Hi Amanda,

    I'm sure that being positive has helped you cope with the illness for so long. My condition is not so severe. I have between 60 and 70% lung capacity, and can live an active life. I usually get a couple of infections a year since I've been taking Spiriva. Before I was sometimes getting 6 to 10 infections each year. I do struggle to maintain a healthy weight though. I'm 5 foot 7 inches but only weigh 10 stones. Is your weight a problem? Like you I try to eat well a d drink lots of water, but I would like to put on a few pounds and not be so skinny.

    Best wishes

    John

    • amanda36284
      amanda36284 John_N_B

      Posted

      since ive started regular exercise and taking arythrimycin 3 days a week i too get the odd infection, mostly in the cold months, i suffer with sinitis and hayfever which can be a pain esp with bronchiectasis, im over 11st  for my height of 5ft 3in  thats why i go the gym few times a week it helps so much and also with my breathing,
  • cofalot
    cofalot amanda36284

    Posted

    Hi Amanda and welcome.  I am fairly new to the site too, although sadly not a newby when it comes to bronchiectasis and asthma.  Had bronch for 67 years from babyhood (at the start of the NHS - so seen many changes over the years).  I had a partial lobectomy when I was 15, even though my bronch is and was diffuse (Idon't think they would do that now in the same circumstances).  Like you I nebulise bronchodilators, hypertonic saline - do physio and also have 28 days on and 28 days off nebbing Tobra.My problem is I am intolerant to so many drugs including abs, so maintenance can be problematic, but hey ho everyone has their probs.

    Look forward to seeing your posts.

    Best wishes cx

  • Kathleen1952
    Kathleen1952 amanda36284

    Posted

    I am the same and your right you have to accept you have it and use all the medical advice and resources you csn but after being on thise site i find that some people don't have good gps or consultants i am lucky i have if you accept the condition and manage it the best way you can you are the best judge then it needn't spoil your life
    • amanda36284
      amanda36284 Kathleen1952

      Posted

      your so right kathleen its just learning to cope with the illness, staying positive helps me, but i understand that when u are first diagnosed, u want to know has much about it has possible and it can be very scarey, ive never thought about looking on internet for forums, im so glad i joined

      takecare x

  • jayne24241
    jayne24241 amanda36284

    Posted

    Dear Amanda I was diagnosed with mild bronchiectasis they told me I had it very mild and the doctor told me I shouldn't have any problems but I have had breathing trouble tightness in my chest did you get these symptoms when you were first diagnosed.
    • amanda36284
      amanda36284 jayne24241

      Posted

      i was only young 10, they wernt sure if id had from birth,when i was diagnosed jayne, my lungs were that bad they were ready for collapsing, i get tightness and short of breath, hot & cold sweats,cough lots of mucus up, sickness but this is mostly when i have infectio, im really lucky to have a great gp and specialist at the hosp x 
    • jayne24241
      jayne24241 amanda36284

      Posted

      Oh goodness you were young bless thank you for the info look after yourself x
  • jeannie4243
    jeannie4243 amanda36284

    Posted

    Gosh Amanda must have been hard dealing with it from such a young age. But i have noticed on  this page how many people have had to cope with this awful ilnness and they do, every one seems quite resiient in the face of it and they all have a positive happy attitude its amazing. My husband is 76 and has it i worry about it more then him lol. He keeps gettin infections had one a few weeks ago 100mg doxycline and it seemed to clear it u, a few days later got another infectionsample showed needed doxyciline again this time not seemed to have worked that well last tablet today, so back down with another sample tomorrow. Hope you are doing ok

     

    • amanda36284
      amanda36284 jeannie4243

      Posted

      hi jeannie

      it was very hard dealing with it from a young age esp when other children didnt understand, but its made me have a more possitve attitude, hope they can sort the right antibiotics for your husband, it all depends what it grows and which antibiotics is needed, im the same when i have infection. i too like you didnt realise how many of us have had this from a youngg age,, i always got told it was a older persons illness, my was caused by having a trachea tube in from the age of 2m to 10 yrs, got colds and lots infections, had low labectomy in 1991, have on both lungs but coping.

      both takecare chat again xx

  • Operalyn
    Operalyn amanda36284

    Posted

    Hello Amanda - it is nice to read such a positive post.  I can beat you - I am the granny of this forum!  I have had bronchiectasis since 1950.  I was a baby of 20 months old.  I have it in both lungs and chronic pseudomonas too.  It is mild, however, and I have been able to lead a normal-ish life, treating myself by doing my postural drainage every day and taking antibiotics when I have an infection.  I am thinking of having saline nebulising next winter because I produce a lot of sputum, quite thick, and this is supposed to thin it out a bit.  I tried nebulised colomycin but it didn't suit me.  Wheezing is a nuisance in summer especially - my specialist always worries about me in the winter but I am often better.  There are more bugs about of course which is a nuisance.

    I too use two inhalers and take montelukast which is an asthma drug but suits me for some reason.

    Light exercise is great (if I remember!) and when I was young I was the first on the danceflloor and the last off - even if I had to go to the loo several times to clear the sputum off my chest.  Sometimes I get fed up - I thought I had finished a course of antibiotics and that my chest was clear last Friday but I woke up on Saturday and it was obvious I hadn't.  I did a bit of swearing and cursing and having a tantrum.  Did me the world of good!

    Keep on Keeping on all you bronchiectasis people.  Amanda you are obviously doing what I do - taking no notice, doing your treatment and getting on with your life.  It isn't possible to be like that every day but every other day will do.

    • Kathleen1952
      Kathleen1952 Operalyn

      Posted

      Hi operalyn i have had this since 1956 when iwas 5 from measles like you i clear the mucus take the antibiotics fpr at least 14 days but they recur i am hoping to go on azithromycin i have been put onthe nebuliser ventolin followed by the hypertonic saline and what a difference it mskkes in clearing the mucus like you i have learned not to let it spoil or control my life keep positvve all and make sure you get the correct tratments fivjt for them if need be
    • amanda36284
      amanda36284 Operalyn

      Posted

      hi operalyn

      i defo take no notice ooops! im doing ok at the moment , ive never thought about looking for a forum page before, but so glad i have, never thought there were so many people out there that have had it since they were young like us, i too have pseudomonas, it was awful when i was younger trying to cope with, other children wernt so simpathetic,so was bullied sad i didnt blame them tho because they didnt understand, all that mattered was close family and friends, i lead a normal life but when i do have an infection it can knock me off my feet for a while, im so glad your coping

      takecare xx

    • Operalyn
      Operalyn amanda36284

      Posted

      I was bullied at primary school too. I was called Snotty nose because of my sinus trouble. I used to miss so much school with being in hospital and having chest infections at home it was hard to make friends. I had lots of love at home though and made friends in my teens that I still have now.

      Keep on keeping on that's my motto!

      All the very best x

    • cofalot
      cofalot Operalyn

      Posted

      Hi Operalyn

      I totally empathise with the probs at school.  I spent most of my childhood in hospital from 1948, as at 5 months old I had whooping cough and double pneumonia.  Tfhere are huge gaps in my education because the teacher at the hospital was more interested in telling us about how many medals her daughter had - teachers were not accountable as they are now.  Even though my Mum liaised with my head teache at school and brought books in for me, it was very hard to catch up when I got back to school.  Thank goodness schooling within hospital has changed now for the better.

      I hope the saline helps you.  Most of the time I use hypertonic 7% but if my asthma is playing up I will then use isotonic 0.9%.

      I had the same reaction from Colomycin, although not at the assessment - ity came on gradually and as I eventually became so SOB I couldn't string a sentence together my GP sent me in on blue.  I now nebulise Tobramycin, a month on and a month off, and I wondered if your con might consider it to be beneficial for you.

      love cx

    • Operalyn
      Operalyn cofalot

      Posted

      Your story is so like mine cofalot! We were born the same year too.

      School was a bit of a nightmare. I was always coming and going. I was in hospital and convalescent home in Malvern between the ages of 5 and 6. We had a good school at Malvern. I was quite bright and passed my 11+ but I was off sick so much I ended up having a bit of a breakdown and had a few months at home before going to a comprehensive. I always say I educated myself by reading and listening to Radio 4.

      Thanks for telling me about the meds. I will mention them next time I see my consultant.

      Cheers!

    • Kathleen1952
      Kathleen1952 Operalyn

      Posted

      I was the same with being off school and to add to the problem i also had a club foot tkat meant i was in hospital a lot although not discooverediscovered till i was 50 i had a hole in the heart plus the veins in and oout of the heart were 3 on one side and one on the other all from birth had open heart surgery to fix it 10 years ago

      luckily i was blessed with a good brain passed my 11 plus and went to grammar school i was able to self teach if in hospital although not fast at spport loved to play ay tennis annd dance

    • Kathleen1952
      Kathleen1952

      Posted

      I have made the best of my life and will continue to do so much easier these days with my vetolin. and hypertonic saline nebulising

      Keep being positive all

    • cofalot
      cofalot Operalyn

      Posted

      OMG we might even be twins!  

      You did very well passing your 11+ after so many stays in 5*.  I am so very sorry you experienced a breakdown - that must have been a struggle.

      Love radio 4 - is there another station then!

      Good luck with your next consultation.

      cx

    • cofalot
      cofalot Kathleen1952

      Posted

      Oh goodness Kathleen you have had so much to cope with.  Great you have come out with such a brilliant positive attitude.  It's sink or swim and I quite like swimming.

      I can't have been blessed with a good brain, common sense yes, but brain no.  Failed my 11+ and went to a secondary modern, where you were considered a failure.  I was top of the B stream but only the A stream were allowed to take GCEs.

      Do you still manage to dance at all?

      Glad you are finding things easier of late.

      cx

    • Kathleen1952
      Kathleen1952 cofalot

      Posted

      Still try at home used to love singing but medication ruins yiur voice loved singing to my records cds stil manage ti look after my grandchildren and alsi being able ti decorate biy i sew and knit love watching football and tennis
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