Trying to get my head around my lungs not working .... was so active before!!! :(

Trying to get my head around my lungs not working .... was so active before!!! :(

Just found out I have multiple problems with my right lung only have half a lung working and my diaphragm also right side has stopped working. I have also been diagnosed with bird fanciers lung. I see my consultant in 2 weeks to put me on I'm hoping some form of medication. I've been out on steroids and course of anti biotics. I'm very low mood as I was so active I'm only 48yrs old. Can anyone give me advice on staying positive.

Thank you Andrea x

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  • Dear Andrea. You are allowed to feel low, you have nasty disease, so don't beat yourself up about not being positive. You are a member of the human race, and I'm afraid that means being a human being. Not some kind of automaton, who can smile all the time. (Incidentally, you do have a beautiful smile.) Everyone here — everyone — has moments when they curse and weep and rant about what has happened to them. But we generally find that a better mood will win through. You are where you are, there is nothing you can do about that. One little step at a time. Imagine that you are talking to a very dear friend who has found herself in your shoes. Listen to what you are saying to her. Believe it and bask in her care. I am a great believer in treats and rewards. Concentrate on what you can do, not what you can no longer do. Am I right in thinking that your disease responds well to medication? And recovery is possible? I do hope you have good GPs and consultants. That makes a big difference.

    Take care, Give it time.

    Kate x

  • Hi Kate thankyou for your message, I'm not sure what medication there is or going to be put on. I have a great doctor who has asked me to go back and discuss what my consultant says to me to make sure I get the best treatment to have a good quality of ever day tasks. I have Emphysema also. My oxygen levels keep dropping as I go up my stait's or on a uphill incline. My blood test for bird fanciers lung was 126 for people who are ok around birds it should be between 1-40. Sleeping I dread as I'm up between 3 4 am with a banging headache. This has improved with the steroids :). I guess because I look OK people think I'm OK it's this that is making me low mood but I just have no energy some days are better than others. A close person said to me snap out of it well I exploded at them verbally and it's given me a bit of a complex since these actual words where said to me. I guess it's another new chapter in my life which I have to embrace .... Andrea x

  • Just a thought, Andrea, but as you are waking with a 'banging' headache have you been tested for Co2 retention?

  • Yes they took blood from my ear lobe first 2 tests where 7.3 waiting several minutes second test 7.9. I was then put on Oxygen for 20 minutes 3rd test 9.2 fourth test still with oxygen 10.2. While on the oxygen my headache started to go away.... raised blood pressure too..... Andrea x

  • That's so heartless-"snap out of it-"-I'm pleased you exploded-I would feel down about it too. Does the close person have emphysema, asthma and bird fanciers lung too? Do you have anyone else to support you and show some empathy? If the close person shows that attitude again can you stay somewhere away from him/her?

  • Hi Andrea

    What Kate says is very true but i would add that you've​ made one positive move by looking for help on this site so well done for that

    With so many unanswered questions it must be difficult for you , however you have already made the right moves by getting medical help ......That's positive and you've moved on to your consultant in two weeks or so .. and I'm with you on this one .and hope he comes up with answers and medication to help you

    Think positive because things are happening for you

    Best wishes

    Graham

  • Thanks Graham and yes finding this site knowing that people are going through the same thing or similar thing than me. People who can answer my questions and can give you empathy knowing what your going through and how you feel. I guess my light at the end of my tunnel has gotten lighter finding this positive group. Andrea x

  • Your very welcome

    Shame i cant wave a magic wand and make all your troubles go away ....If only life were that simple

    The best of luck to you

    Graham

  • Thank you :) x

  • Andrea. I'm Bob 66 and have just been diagnosed. Your post has touched our hearts. Please continue to keep us informed.

  • Hi Bob I surely will I go to see my consultant on the 13th April for all my test results.... you to take care Andrea x

  • Hi Andrea, mood swings are pretty much par for the course.I was diagnosed over Christmas. It is very easy to fall into a negative way of thinking. The way I I look at it is OK I have lost this but I still can do this and build on that. I have changed my diet, gave up bad habits and started exercising. I am fitter now than I have been in a long while. Research what you can do to help yourself. Take control.

  • Thank you once I get my results I've got places near me that are excellent 1 which is at the top of my list is breathing space right near me. My Dr says he will refer me if my consultant doesn't it's a 24/7 life line too. Gym swimming pool it has everything. At the mo my oxygen level is very low so cannot walk very far before I'm gasping for breath then my lungs hurt. Once I'm on the right medication I'm sure I will start to be able to become more active.... Andrea x

  • I have right side diaphragm issues as well as lung and heart problems and a few other things thrown in. But I will not let it beat me I try to be a positive as I can be. As for people telling you to "Snap out of it" Tell them to do everyday tasks but only breath though a straw and see if they can snap out of it then?

    Might help if you are propped up a little more in bed as I drop 12% when flat too.

    Be Well

  • Hi I have 3 pillows and a corner pillow so this is helping. Just during the night in deep sleep I seem to go lower lol then wake up with banging head ache. Is the consultant doing anything about your diaphragm? Andrea x

  • No they are leaving it alone. Becuase of all my other conditions they feel it better left alone rather than try and pull it down. I think it is the fact it is doing nothing and moving it down will not make the breathing any better. It is the silly things like bending over to do laces etc. I cannot breath. So I only have slip on shoes now with a long shoe horn. Cant beat um join um? ;)

  • That's so me too and putting my socks on well right foot .... my heart is fine as I had echo test and my Dr said it was fine my cholesterol is 4.4 so really pleased with this. I'm no sure if my consultant will do anything with my diaphragm... will know more on the 13th April.... 😀 x

  • Good luck with it and keep us up to date with how it all went.

  • Will do :) x

  • A very warm welcome to you. So sorry you have your health issues and are down too. We generally look quite well and it will ring bells with many of us the comments your insensitive 'friend' came out with. Folks often say 'you look well' when we feel really rough. Good for you for sticking up for yourself.

    I hope things improve for you.

    cx

  • I'm quite pleased when people tell me I look well although sometimes I do point out that bad lungs don't show. Good really considering what stress and steroids can do to our looks but I would also be mad if I was told to 'snap out of it'.

    Hope you feel better soon,

    Best wishes

    Jo xx

  • Thank you Jo I don't think they will ever say it to me again .... haha :) x

  • Thank you :) x

  • Thank you I've had to change alot and noticed who is stressing me and who isn't. I've no time for these negative people they can latch onto someone else ... bye bye haha :) x

  • Bless you Andrea - it's a lot for you to take in, not helped by insensitive people telling you to 'snap out of it' - glad you told them where to get off!! As Katinka says, take things one step at a time. You're already fighting & helping yourself by reaching out - you'll find great advice, support and inspiration on this site. Things will get better - sending hugs x

  • Thank you its just a loving relief you guys know exactly how I feel on a day to day basis .... and can give me great support and advice.... great pick me up on low days ... just magical for me :) x

  • Do you have an Oximeter so that you can measure your oxygen levels? I managed to buy a very good one from Amazon. I get it checked with the one my GP uses and with the ones used at the hospital and it is very accurate. It cost me £29.95 but it is about £33.85 now I think.

    I have scarring of the lungs and at first they thought I had Bird Fancier's Lung Disease. This was then ruled out. The scarring of the lungs caused my lungs to become really stiff so that I cannot breathe out fully and cannot breathe in fully. I get really breathless as soon as I start to move and my oxygen levels drop. I am on oxygen 24/7 but I take it off at night for some of the time. If I fall asleep without it I wake up with a bad headache too.

    I find I can do exercises whilst lying flat on my bed. I can also lay flat on my pilates machine and exercise on that. Exercise is extremely important but only when you get your oxygen levels stabilised. In the meantime, while you are waiting to get your oxygen stabilised, try to do deep diaphragmatic breathing and carry on doing this as it is very good for you.

    Take Care from

    Twinkling Star Xxx

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