Posted , 13 users are following.
HI im a 44 year old lady who has has been told I have bronchiectasis ,I have felt unwell for 2 years ,and had test after test,Im feeling a bit overwhelmed and a little upset ,has anyone got any good advice and tips how to keep well and healthy as possible
1 like, 28 replies
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dancing_queen Jockeys
Posted
Hello there,
Look on the positive side, you have now been diagnosed so the next thing to do is allow yourself to get used to this and the next step will be to see how you can help yourself.
I've had this for 40 years now and still learning all the time.
Everyone is different with their symptoms, but you will learn how to cope with them. When you are feeling exhausted try to rest. If you are working this isn't always easy.
If you cough up a lot of phlegm, as I do, I find using a salt pipe (15 minutes a day) helps to loosen it up and then I use an Acapella to help me cough it up. The Acapella works like someone doing cupping on your back.
You will have good days and bad days so when you are feeling well make the most of it.
There are an awful lot of us about and you will get some great advice from this site. Adapt some of it to suit yourself.
Most of all, carry on enjoying life. Don't let it get you down all the time (we all have those kind of days/weeks). You will learn to live with it.
Take care, Anne xx
Anne xx
Jockeys dancing_queen
Posted
Joanne x
dancing_queen Jockeys
Posted
Hi Joanne,
Didn't mean to sound harsh but we both know that it could have been a worse diagnosis.
Anyway, I think the salt pipe is a definite. If you look online (we can't mention brands) you will find some. They're very economical too.
I use an Acapella as I find lying down helps to bring up the phlegm. I lie on my side on my bed with a couple of pillows/cushions under my side so I am tilted with my chest lower than my legs (this helps me to cough/huff up the phlegm a little easier. I used to use a Flutter but had to sit up to use it but the effect is still the same - personal choice I think. I do this every day and if I've developed an infection and I'm on my antibiotics I do the routine a least twice a day. It does make me feel much better. As there are no side affects with these it doesn't matter how much you use them.
I also find damp weather makes me worse so I try to stay in when its raining.
xx
Jockeys dancing_queen
Posted
dancing_queen Jockeys
Posted
Jockeys dancing_queen
Posted
x
Russell27NOLA dancing_queen
Posted
DQ, Russ here. Hope you are well as it seems by your letter. I have question for you. You have had BRX for 40 years. I have had it, at leasted diagnosed for 10. I'm 69 and have not really had much trouble except in the past year and a half. In fact I wasnot aware that I really need to do anything special to keep myself healthy. I can not explain that way thinking with any sort rational thought.
The quation is that I had been having frequent infections (as I think you have read) before starting AZ.
The thing is I am beginning to feel sort of sick again. or maybe it's really more fatigued than I have had since beginning the AZ.
I use my NS nebulizer 2x daily and have begun to have more asthma so am also using Ipratroium 2 to 3 times daily. I use my staionary bike to exercise 3x per week and also do stretching and lite weighs in the mornings..
Im wondering if you have any ideas for me. One thing I am thinking is that I might need to change my diet, maybe completely.
Glad you are seeming well and thanks for your inspiration .
Best
Russ
lisajane1964 Jockeys
Posted
Hiya I'm 51 and had all my life . I don't know any different. Keep warm especially in winter as if cold gets on your chest .. rest alot when tired. Apart from that you can lead a normal life .. keep well x
Jockeys lisajane1964
Posted
take care
lisajane1964 Jockeys
Posted
Yes definitely a juggle job.. I got 3 children ( well all grown up left home now ) so I know how hard it is.. when I was poorly I used to stay in bed (. Sometimes they had day off .yes I'm naughty ) but seriously as long as you rest and as soon as you feel poorly get to doctor for antibiotics. Try and deep breathe to stretch your lungs .. take care too x
jenny92570 Jockeys
Posted
I've had it all my life too. Don't worry too much, at least now you know what the problem is. The main effect I think it has had on me is tiredness and of course coughing, I really don't mind or notice the coughing.
But for tiredness, let yourself rest, go to bed at 6pm as soon as you get through the door if you need to or all day if you have to and you can and never feel bad about it.
I have never been able to have a full time job because I get too tired, when I realised it was never going to work and I stopped being so hard on myself things were better all round. So maybe you'll have to make some adjustments to your owrk schedule, now or some time in the future.
Having mentioned resting, one thing that worked amazingly well, and made me feel more normal than I ever have in my life before, energetic even, was the NHS rehab program. They do one hour of information and talks, and one hour of exercise, twice a week. As a newly diagnosed person you will probably benefit greatly from the information, you will get a chance to talk to a physio who knows about lung conditions, though they might not be an expert in bronchiectasis.
Then the excercise class itself is great. I was expecting somethng like light aerobics but it's just like having your own personal trainer, they make you work as hard as you possiby can and get your heart rate up with lots of cardio as well as recommending weight machines. I was nervous as I knew I would be exhausted the rest of the day and the whole of the next, and that did happen but miraculously after a couple of weeks I was just tired directly after, and felt so much better.
So please ask about that, try and get your specialist of GP to refer you, there is a bit of a waiting list usually.
And I second the use of a salt pipe, I use a nebuliser for saline, it does the same job. I found it appallingly hard to do my physio until I got that and it really helped.
xxx
Jockeys jenny92570
Posted
charles97600 Jockeys
Posted
This is overwellming at frist but you will be okay, when you get it under control,all the advice you have gotten is great,we all hve been there so read all the past forums to learn and to try,such as the nebulizer,I use Sodium Choride ( which is Saline ) and if need be after that to help open your airways Albrutrol 3.5% followed by Symbicort twice a day,ask your Doctor first about all that you read that we all try first as we say we are all different.
Also if you read about Azithromycin which alot of us are using has been a big game changer for alot of us,but as always ask your Pulmonary Doctor about it first as I did mine and what made them give it to me is I printed out alot of the response on this site for them to read.
So you will be fine by just keeping it uder control stay well.
Regards,
Charlie
Jockeys charles97600
Posted
take care Joanne
jenny92570 Jockeys
Posted
Just a quick caution about the azithromycin. It is an antibiotic and I wouldn't rush straight into taking a long term antibiotic for the rest of your life without seeing how you go first.
It has been very helpful for some people but for me it produced side effects I didn't like and I wasn't too sure of its efficacity. You can also become resistant to it so maybe save it in the arsenal for later.