how i cope with bronchiectasis
Posted , 9 users are following.
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
trish40354 amanda36284
Posted
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 trish40354
Posted
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 amanda36284
Posted
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 amanda36284
Posted
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 John_N_B
Posted
cofalot amanda36284
Posted
Look forward to seeing your posts.
Best wishes cx
Kathleen1952 amanda36284
Posted
amanda36284 Kathleen1952
Posted
takecare x
jayne24241 amanda36284
Posted
amanda36284 jayne24241
Posted
jayne24241 amanda36284
Posted
jeannie4243 amanda36284
Posted
amanda36284 jeannie4243
Posted
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 amanda36284
Posted
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 Operalyn
Posted
amanda36284 Operalyn
Posted
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 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 amanda36284
Posted
Keep on keeping on that's my motto!
All the very best x
cofalot Operalyn
Posted
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 cofalot
Posted
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 Operalyn
Posted
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
Posted
Keep being positive all
cofalot Operalyn
Posted
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 Kathleen1952
Posted
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 cofalot
Posted