Newly Diagnosed. Help!
Posted , 11 users are following.
Hi all. I have recently been diagnosed with bronchiectasis (yesterday) and am looking to find out some further information. I saw a Register who told me about the condition, gave me a leaflet and told me to come back in 9 months! I was told I needed to carry out my own physio daily and that a physiotherapist would be in touch to show me how to carry out these exercises. Of course the first thing I did after coming home from work was to "google" and was hit with the words "chronic" and "life expectancy"! I really don't know what I am suppose to be doing (or not doing). Also I have a dull ache on my right hand side just under my shoulder blade. Does anyone else have this?
0 likes, 14 replies
dancing_queen amanda02556
Posted
The first to do is not panic. The websites can be very frightening, especially when you are not sure yourself how to manage the condition. I've had it for 40 years now and I'll still going strong. I'm in my 60s now.
Yes, you do need to do the physiotherapy yourself and you will manage to it. You will find lots of help on this site, it has helped me tremendously. Yes, I do get aches which can occur anywhere (for me) within my chest area. At the moment I'm getting it right in the centre and through to my back.
All I will say is listen to your body. You will learn to know when you need to rest and when things improve just get on with your normal life. Yesterday I was exhausted and had to rest, today I feel pretty much OK and much better for resting.
Keep in touch and you will learn to live this condition. Just remember, you can lead a pretty good life if you can keep it under control.
Take care and don't despair.
Anne xx
alouette amanda02556
Posted
Make sure you keep your immunity on a good level and be sure to exercise. Staying inside and suffocating in dust will not help you.
Try to find teas which support lung health. Make sure to cough out all you have in there every day.
What symptoms do you have? The condition varies greatly from person to person.
judy888 amanda02556
Posted
I also have a LONG wait to see a specialist and had to find out about this disease via the internet. Your situation is similar to mine - except that I wasn't even given a leaflet or told to do physio! ( I live in Australia )
Try not to be too overwelmed by info on the forums, but it can be helpful, especially in regard to keeping the lungs clear ( I cough so much mine must be clear
and stay active / exersize / drink plenty of fluids.
There seems to be quite a variation re the seriousness of peoples' conditions.
Best wishes
cofalot amanda02556
Posted
Sorry to hear you have bronchiectasis. I've had it since 1948 from babyhood, so please don't panic. You are doing the right thing trying to get as much info for yourself as you can, but please beware of some sites and stick to the reputable ones. Apart from this one there is Bronciectasis R Us and HealthUnlocked British Lung Foundation. The best practical info in my opinion http://www.chss.org.uk/chest-information-and-support/about-your-chest-condition/common-chest-conditions/bronchiectasis/
Good luck
love cx
kirst5 amanda02556
Posted
I am also newly diagnosed though I have been given a bit of information I am still adjusting.
Kirsten x
pinksnugsy amanda02556
Posted
Like other fellow bronchiectasis suffers have said don't panic. I'm 47 an lived with it all my life. Up until 5 yrs ago a ran 5 miles 3 times a week and I've always been active. I've had to slow down a bit since pseudomonus hit my lungs but when I'm well I live life to the full.
Most important things are:
Keep active as much as possible when yr well
Clear the mucus by doing physio at least twice a day. (Ask yr consultant for an acapella they are a great help)
If you start to feel unwell send a sputum sample off asap to see what bugs yr growing.
Accept there are days when you are exhausted & rest up if possible.
I get aches & pains in my lungs & I'm sure other people will tell you they do to. Mine are generally worse when I get an infection.
Take a spoonful of Manuka honey everyday if possible.
Eat healthily (but you can still party if you want to we all deserve a break!)
Ask plenty of questions on this forum if you need advice because there are so many lovely people on here that can help.
Take Care
Rach x
alouette pinksnugsy
Posted
cuddles1 amanda02556
Posted
Karyn
Operalyn amanda02556
Posted
Incurable sounds awful but basically (very basically!) bronchiectasis is not a disease but lung damage as a result of something else in my case measles. That's why it's not going away - the damage has been done.
Living with bronchiectasis isn't always easy but the physio is the key to everything - getting that mucus away is vital. Apart from that it's just healthy lifestyle stuff - drink lots of water, rest when you're tired and get out in the fresh air and walk if you can. I hope you have a good GP - they can be your friend. Keeping a supply of antibiotics in hand to deal with infections and mine also has a respiratory nurse who sees me once a year and monitors my condition and gives me advice.
Good luck!
Operalyn amanda02556
Posted
amanda02556
Posted
Thanks again everyone x
dancing_queen amanda02556
Posted
So pleased you're getting the information you want.
I find the cold, mainly damp, weather affects me more. We (my hubby and myself) do try to book a winter holiday to the sunshine as it cuts the winter months down and does seem to boost me up. We haven't managed to go on holiday this winter though, hey ho. A prescription for this would be great wouldn't it.
Operalyn amanda02556
Posted
td3 amanda02556
Posted
Cold, damp weather or very humid weather does affect me, but I also have mild asthma, so sometimes it's hard to say what problem is what!