Hello paul I had to give up work quite a number of years ago I used to take so much time off my two sons were a great help to me when I was very bad doing physio helping cook get in and out of the bath coping a lot better for the last 12 15 years lots of medication has really helped but I have learnt I have to rest more and pace myself more on my shopping days I rest up the day before stress makes bronch worse lookk after yourself xxx
Hi Paul - I have had bronchiectasis since I was a baby too. I am very lucky - I don't get as breathless as you obviously do but I do get very tired. I have managed to work all my life (I am retiring in summer) but I have had sit-down jobs which didn't need too much energy. And I had a lot of time off in my 30s and 40s which meant I was always being called into speak to the management about my time-keeping, even though they knew about my chest complaint.
Eileen is so right! You need to pace yourself with bronchiectasis. Good rest, early nights, lots of fluids (my local COPD nurse told me about that only the other day - you really need to keep hydrated, it thins out the sputum apparently. Boring but true! I didn't do much of that in my naughty 20s and boy did my chest suffer.
Anyway, I hope you are getting enough help from your GP and that you are with a lung specialist at a hospital. That is the most important thing in my opinion.
Take care of yourself.
Hello all........fatigue is a major problem....and learning how to cope and manage tiredness and malaise is not easy.......in fact I have just launched twelve new pages on my website www.bronchiectasishelp.org.uk including a section on managing fatigue with a contribution from the Freeman Hospital Bronchiectasis Service, Newcastle........they have conducted research in to
this debilitating symptom.....very interesting.......take care.....Robert
Ha, Ha, Ha! my doctor thought the productive coughing was acid reflux because the xray was clear; and had me on opoprozone for 9 months and told me I had to take them for life!! until I had a bad lung bleed, then the locum sorted it!
Well what do you know? CT scan; Bronchiectasis all the time.
(No more indigestion tablets, but they did cause a lot of trouble as they gave me acid reflux when I stopped them. It has taken three months to be finally free of the problem).
Kind regards,
Hi robert the help sit you put up was very helpful am going to pass it on to other suffers if you don't mind so many out there looking for information on this disease I have learnt so much as I had never spoke to any other sufferers of bronch thank you untill I went on this site and was passed on to other sufferers so thanks again
Hi dancing queen...off to the honey pot! straight away...thanks for the tip...
Hi Eileen, there is a useful site for meeting other Bronchiectasis sufferers called bronchiectasis r us ... they have some good forums to answer questions and share experiences. Kind regards, Lesley
Hi lesley have joined a couple of sites which are brilliant I have had bronch since I was very young am now 62 but thank you be well xx
I too am a life long sufferer. I am now 55 and 'going strong'. I would love to follow your site as I live in South Africa and have only met one other person with bronchiectasis. I have never researched remedies, i just somehow battle along, trying to live as normal a life as possible among the healthy!! Janine
Me too Janine - I am running myself ragged at the moment looking after my poorly 89 year old Dad! I have always taken no notice of having the complaint and kept going until one day my body says..."give up you need a rest" and I do. Sometimes!
I have actually overdone it very badly in the past and made myself ill because of it so it is not to be recommended but when you have had the complaint as long as I have, the only way to deal with it is to just get on with it.
Lyn
You are so right Lyn I have mastered the art of NOT getting stressed out knowing it lowers my immune system and leads to chest infection. I am careful to pace myself and keep myself "flat lined' emotionally - as I call it. Situations come, like my dear moms needs, and I do what I can and not more. I dare not.
Hi Robert,
Although not diagnosed with Bronchiectasis (I do have COPD though) I have found your website absolutely brilliant, and am especially pleased to learn of the 'know your numbers' pages.
Keep up the good work, websites such as yours' are worth several GPs 'opinions'
Can't turn the pages!
Sorry about that Liz......try scrolling with cursor from top right of page as if turning page ..or.. Click on thumbnail icon on menu bar and click on desired page........some computer systems are not geared up for flip page websites......hope all this works......take care....Robert
I am so pleased pleased to have found your website... and found it to be very informative.
Hi, Robert I am looking forward to viewing your website. I am across the "big pond" in the States - Florida. The lung doctor that I saw 3 weeks ago told me that the CT scan I had in April 2013 missed the bronchiectasis. It wasn't until this year 2014 after my annual sinus infection, the cough would not go away and 4 months later and several doctors (allergist, ENT, neurologist and finally a lung doctor), I am told I have bronchiectasis and that it was missed 16 months ago. I have been coughing since end of March and I am still coughing. It is very depressing. I don't know to trust this doctor because when I talked to his nurse this week she asked did the doctor tell me about bronchiectasis and I told her he showed me diagram and that was basically it. She told me to google it. I don't what I am feeling is normal or which doctor to inquire to. I am fatigued, some days extremely. There has been no mention of pysiotherapy. I was given a flutter. I don't know that I am coughing up any phlegm. All the informative sites I have found have been from the UK but I doubt my insurance company will pay for me to come to the UK but right now I ready to :-)
Hello Mary Ann - Your story is very typical of newly diagnosed bronchiectasis patients - you are sent home after the diagnosis with a brief explanation and lots of confused messages of what to do......this is exactly why I produced my website.
I have had 40 years of coping and managing this debilitating disease and built up a vast knowledge of information from health professionals and my own experience of coping and self managing the effects of this disease.
There is no cure for bronchiectasis.......however there are many successful treatments and procedures to eliminate or control the symptoms....self management is the key factor and that is what my website is for....to inform and encourage patients to take control of managing this disease. Here in Scotland encouraging patients to take up ''Self Management'' is a key priority with health authorities which is why I was sponsored by the Health and Social Alliance Scotland to produce this website.
What will be important to you is to find a hospital with a comprehensive respiratory department which has a specialist bronchiectasis service. My own hospital here in Edinburgh is fanatastic - specialist bronchiectasis nurses, doctors and physiotherapists just a phone call away - I couldn't ask for any more.
Have a good look through the website www.bronchiectasishelp.org.uk and take control....this disease can be successfully managed to give all patients a beter future and quality of life......take care..Robert - Website Creator and Director.
Went to your site and I really liked it! Thanks!
Thanks Robert! I am going for a second opinion on Monday. I am going to Shands which is a teaching/research hospital associated with one of our Universities. The doctor there has already ordered two tests and I only made the appointment today. I think this will help with the mental frustration/worries.
thank you so much robert. diagnosed yesterday, aged 67. a total shock!! been coughing and unwell for ten months. seen three docs for chest infections, then the one i see now treated me for post nasal drip, then silent reflux. got a non urgent referral to respiratory specialist cause a chest x ray i had in january came back clear. so now coming to terms with it. knew i was not well and once went to a@e they sent me away with a flea in my ear as a time waster!! also have type 2 diabetes. the diabetic forum has hugely helped and i know yours will help all us with this nasty condition. i plan to keep on swimming and walking (both very slowly). all best wishes to you and the rest of our gang>