New shock diagnosis

[Salks]

Having previously been fit and healthy I have Just been diagnosed with bx after 3 emergency admissions in 2 weeks. Can only keep breathing with steroids every time they stop them I can't breath again. Had lung function tests today and they were pretty good FEV 86% and oxygen saturation 98% on air but I still feel I have to work hard to breath. I'm panicky and frightened. Can anybody out there give me any encouragement?

[skischool]

Salks,i can certainly encourage you on your FEV levels and sats both enviable statistics that most of on this site would excuse my pun die for.Please try not to get anxious as this will only increase your breathlessness but obviously seek medical advice from your gp and respitory team if you have one to investigate the problem.Try simple breathing control exercises for now to try to alleviate your immediate needs but once again your vital stats are very encouraging.best wishes mike

[Salks in reply to skischool]

Thank you for your prompt reply it's great to know I'm not alone. I know my lung function isn't too bad and I think anxiety is playing a part in my problems so I will take your advice and try some breathing control exercises.

[Roessner541 in reply to skischool]

Anxiety medicine and Del arrest might help I also had a nurse coming to my house for physical therapy and to monitor my condition I have COPD that was in pretty bad shape for a while I'm okay now but it took a lot of work

[Lyd12]

Can you tell me what bx is, never heard that before. Wishing you well. IRs x

[Salks]

Sorry bx my shorthand for bronchiectasis

[Lyd12 in reply to Salks]

I am slow, should have worked that out. BX ismy complaint, notmuch fun but jog along. Get fed up with seldom feeling well, husband must get sick of hearing me say I don't feel well! I seem to feel different one day to the next, often thinking a cold is starting, I think it is the wretched mucous always bugging us.

[mrsmummy]

Hi, you have some great advice above. Welcome to the forum.

[Salks]

Hi Lyd. You're the first person I've had contact with who has bx too. Have you had it long? I can't believe that I had no idea that anything was wrong until I started with a dreadful exacerbation 6 weeks ago. Three hospital admissions and continuous steroids ever since. Feeling much better now but I get terribly tired, is this normal? My husband must get sick of hearing my say how tired I am!

[Maximonkey]

Hi Salks, I too have bronchiectasis, it wasn't much fun before diagnosis but since then I have been on Azithromycin and I have been really very well indeed. Slightly more tired than I would like at times but hey I thought I was dying so anything is better than that. Do you have a consultant? If you do not ask to see one as you are struggling with your symptoms and need help. If you are struggling with multiple infections they should have sent you to the hospital for help anyway. I am now on an Azith holiday for 3 months to see whether my body can cope without this med. I also have a dedicated asthma nurse at the hospital who I can phone for advice if my breathing is ever really bad, you too should have this. As for being on the steroids, I too have been down that road, please try and stay calm, difficult I know when you feel every action is a mountain to climb but anxiety is your worst enemy as this will make your breathing worse. Do please ask your GP to refer you to the hospital you are obviously not coping very well and staying on the steroids will give you bone damage eventually, so do not delay. Good luck and take care. Please let us know how you get on. Maximonkey

[Salks in reply to Maximonkey]

Hi Max, I do have a consultant who has put me on reducing dose of steroids. When I was admitted (3 times in 2 weeks) they just gave me 7 days at 30 mg and stopped it. 2 days later I couldn't breathe again. Down to 4 a day now and doing ok. I'm now waiting for apts with respiratory nurse and chest physio. I have also been put on duoresp. I hope with the combination of all these things I can keep well. Thank you for all the info I will keep it all in mind as I try to adjust to this new situation.

[Maximonkey in reply to Salks]

Hi Salks, I am so glad you are being looked after. You will calm down when you get used to the idea of bronch, I was very grateful it was not terminal and could be controlled. Could I just suggest that in between appointments you keep a daily diary of how you feel and how your life is, it sounds daft but I found it invaluable. My consultant was delighted as he could read how the disease was affecting me day by day, he could also read what my needs were. I also needed immunology help as my immune system had closed down, this consultant did not even have a letter from my consultant so he was delighted when I produced my diary file for him to read. He was great and I am very thankful that after a very expensive injection or two I was well on the road to recovery. Good luck and take care. Maximonkey

[Salks]

Thanks Maximonkey that's a great idea I will start that today. What are the injections you speak of. I'd like to know as my blood tests show my immune system is not coping well. Thanks for all your advice it's very gratefully received and is helping me to come to terms with things. If you get similar message to this it's cos I did it twice but one seems to have disappeared! Thanks again.

Salks