Newly Diagnosed. Help!

Posted , 11 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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

Report

14 Replies

  • Posted

    Hello Amanda,

    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

     

    Report
  • Posted

    Bronchiectasis is not so bad if you manage it well, jut make sure not to get infected with a chronic bacterium. Now, that's serious.

    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.

    Report
  • Posted

    Hi Amanda

    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 wink and stay active / exersize / drink plenty of fluids.

    There seems to be quite a variation re the seriousness of peoples' conditions.

    Best wishes

     

    Report
  • Posted

    Hi Amanda

    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

    Report
  • Posted

    Hi

    I am also newly diagnosed though I have been given a bit of information I am still adjusting.

    Kirsten x

    Report
  • Posted

    Hi there

    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

    Report
  • Posted

    I also get pains in the chest, bad if I have an infection. My speciaist told me , you have incurable bronciectisas and handed me after visit summary and said see you in six months. I have learned from this site and then asked to get acacpella, and also asked about setting up the sputum and rescue meds plan. My primary doc has been very willing to help, though she does not know much about the disease. Seems you need to do the research and push for what you need.

    Karyn

    Report
  • Posted

    Amend I am 67 and have had bronchiectasis since I was 1 year old. I worked until I was 66.

    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!

    Report
  • Posted

    Thanks everyone for all your replies.  You are a very informative bunch!  I feel tons better now I actually have some information.  At the moment I feel well. I'm 44 years old with 3 boys under 12 so they keep me active! Also I try to run about 5 times a week so I think this helps keep my chest clear.  I think I do need to improve my diet though, and take on the advice about drinking plenty of water.  I haven't spoken to my GP yet, but I have had the same GP for 20 years so I have a good relationship with him. Does anyone feel the weather affects them? Probably like most people I tend to feel unwell in the colder weather. Good excuse to book a holiday in the sun. Maybe that should come on prescription!

    Thanks again everyone x

    Report
    • Posted

      Hi Amanda

      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.

      Report
  • Posted

    Funnily enough I am at my worst when it's very hot. I simply can't breathe. When it's very cold and dry I find it a bit tricky but damp weather is OK. Good job with the weather we've been having this winter!
    Report
  • Posted

    Amanda, I started taking a vitamin regimen and I think that has helped me with the fatigue.  (along with keeping the lungs clear, of course)  I swim and do yoga and walk,  but it seems the swimming gets the gunk out the best.

    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!

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up