Can't chase away the fear of bronchiectasis

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After 6 years that I have been diagnosed with bronchiectasis is the first time I really research some support online. 

I have been assured that is not a deadly sickness. I' m under the attention of a specialist here in US. But I'm still scared. 

It happens sometimes that I cough blood (which I have been told can happen). Sometimes I been given antibiotics to fight what maybe leads the bronchiectasis to bleed. 

At that point I really need some support because the fear that I kept inside for 6 years is eating myself. 

I saw some comments here that made me feel a little better. I hope to find more that would help me to fight not only the sickness itself but also that fear that seems I can't chase away. Thank you all!

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16 Replies

  • Posted

    Hi Robert,

    I had a lung bleed when I was first diagnosed which was a blessing in disguised as I was being treated for indigestion!! It was an infection and as soon as I had some antibiotics it cleared up.

    These infections occur occassionally and are sorted with more antibiotics. It is a good idea to read all the threads on Bronchiectasis on this forum as you can learn quite a lot from other peoples' experience.., and I feel that I am not alone.

    Blessings,

    Lesley

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    • Posted

      Thank you Lesley, I'm reading many posts about it. I think I let myself wait too much before to external my concerns. Now is difficult to chase that fear away. To be honest I researched one time at the begin and what I found on Internet was a deadly sentence, so after that I stopped to research and keep the panic inside. What a dumb choice right? smile

      I appreciate a lot your comment in support. Thanks again.

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  • Posted

    Hi Roberto

    I have had bronchiectasis for 50+ years now and have seen a GP(General Practictioner in the UK) probably a hanful of times for my chest.

    I have a 7 day course of amoxicillin put away for when I get an infection which is probaly nowadays less than once a year.I have flu jab each year and about 10 years ago had the pneumovax jab( normally at that time given to patients over 80)

    I had a nasty bleed or haemoptosis about 30 years ago in the middle of the night which was very frightening and makes you panic.For a few weeks I was frightened to cough and when driving I was always looking in the driving mirror to see if what I had coughed contained blood.I had a flexible bronchoscopy and it was a little while later that I always kept my antibiotics available.

    I work as a registered nurse and unfortunately I dealt with lots of "leg ulcers" and visited smokey houses. I felt that Iwas always picking up infections but I treated them quickly I could tell there was an infection by the way the sputum changed in consistency and taste.Sorry about the graphics.

    Thankfully unlike a lot of people on the forum I have worked always full-time and have not had time off sick for my bronchiectasis.(apart from the bleed and an episode of pleurisy before that but more than 30 years ago.I have had time off for a cold but for some strange reason I always appear to get a cold on days off.Probably my immune system is good when at work but lets me down on days off or holiday.

    Read all the books and information on here but dont always let the fear get the better of you.I started to get panic attacks after the bleed because I thought I had cancer and even now occasionally I get frightened some days but I was taught how to relax at a Cognive Behaviour Session ( I was referred because of anxiety and depression)

    I hope this helps. Good luck.

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    • Posted

      Thank you Charles! I'm scared of the bleeding. I'm always afraid that is not stopping.

      I havd a 2 years break about that, but a month ago happened again. (mild bleeding. like gums thatbleeds for cleaning the teeth). Today I saw some pink again in the saliva and I think is again that. Scared!

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    • Posted

      My bleeding was heavy frank with large amounts and probably a cup or two. So long ago now that I forget but in the night. It will stop unless you have a problem with clotting.

      The bleeding is normally a sign that you have an infection.The lungs become inflamed and inflamation results in there being more blood in the area because your body is trying to fight the infection.(If you have a wound on your hand it will be red around the edges and swollen around the edges and the swelling causes the skin to be painful.)If the same happens in your lung it is more prone to bleed.

      Do you get bleeding gums? Check with your Doctor that you havn't got a lung infection. Are you poorly with chest pain and more thick mucus? Did you mean saliva or sputum?

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    • Posted

      Sometimes my gums can bleed when i bursh my teeth. I got antibiotics a month ago because a mild bleeding fact.

      Today "blood" was coming from te mouth after I was coughing, but strangely not feeling was coming from the lungs. I wonder if some sinus drained in my throat. Was after a shower.

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  • Posted

    Hello. I had hemoptysis few months ago, that's how i was diagnosed with bronchiectasis. And I'm frightened to cough sometimes, even when i'm choked with food smile I don't have cough and I dont have mucus, so doctors can't take it to check on infections, and they don't give any antibiotic just because rare spittle of blood. (in my first hemoptysis i had antibiotics in a hospital for just 1 week). So doctor says if i've cough with little amount of blood - take Etamsylate( hemostatic pills) for few days, and Ambroxol (it's not antibiotic i guess) and wait. :D If it don't stop go to the hospital. I'm panicking very often when i remembering about it, but then i'm thinking "we are live not in middle ages right?" Even me livin in Russia hoping to get medicine help if my things get worst.
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  • Posted

    Also i had spit of blood after ice skating (the weather and air was very moist, and i have hard physical load). I heard that overly moist air giving spasm to the bronchi ... can not tell for sure. Doctors says do not go in to sauna, do not carry heavy weights, do not eat hot food or very hot liquids, and do not get over warm.

    So i try do not do all this things and i don't like moist air now)

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    • Posted

      I never been told to be careful abot moist air, sauna, and all the rest. Seems like I will not be able to do usual things I do :-(
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    • Posted

      Well i live my regular life. I never wanna become professional powerlifter anyway. I carry heavy bags sometimes, just know my limits. And i never want going to a sauna, because i don't like sweating. Ask your doctor for advice about physical activity and other things like hot drinks and food, now i'm curious what another doctors say about that. We must stop panicking too much smile Some people living with bronchiectasis over 50 years!
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  • Posted

    This is the first time I have researched for support online also.....I thought it might help to talk with others that have this problem...it sometimes sucks...like last night...but this afternoon has been better....like "Forest Gump" said "Life is Like a Box of Chocolates You Never Know What You are Going to Get"....just a little humor..
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  • Posted

    P hope you will find help and will feel more peaceful after reading about others on this group.  There are people who have lived productive lives for many decades with this disease.  There are treatments and exercises that you can do to keep your lungs clear. When I thought I had had a resistent form of asthma, I actually felt. ore down about my situation. I was always treating exacerbations.  there seemed no way to avoid the flares.  Now that I know I have B, there are non medicine ways to prevent as well as treat the illness.  I am feeling very encouraged.  this group will be so helpful.  It will be good to learn new treatments.  It will also be a great place to "rant" to people who understand.  To start with, I hope you can sign up for yoga, or massage...anything that will help with relaxation. Best of luck!
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  • Posted

    Hi Robert I am actually terrified it's all I think about is it going to kill me I cry none stop they say I have the mild Bronch but the only thing I get is breathing quickly pains in my chest and back i am so scared all I do is cry they have had to put me on anti depression tablets I should get to see air private chest specialist as my doctor referred me last Friday so hopefully it will be soon ...I just want my life back or near as it was .all the best of luck to you God bless 
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  • Posted

    Hello Roberto, read your message and I know what you are going trough....about the blood, don't worry, that can happen. It has to do with the inflammation of the blood vessels. ( I hope I write this correctly , I' m not english)  most important, exercise and fysiotherapy. You have to drain your lungs in order to avoid infections. Try to find a good fysiotherapist, specialised in patients with bronchectasie or cystic fybrosis.. A very good thing to buy is the flutter. Look it up on internet. It helps to cough up the sputum easier.... And ask the doctor whenever you have worries. Dont'be too shy to ask questions! Walk a lot and breath correctly during the walking...

    if you can't control your mind and you go on being afraid and worried, then try some meditation, that will help as well..... Good luck and hope you'll feel better! Christianne

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  • Posted

    Hi Roberto,   I'm newly diagnosed and working on my second infection.  Most of the time , I feel very grateful for all of the blessings in my life and tell myself that I could have much worse.  Other times,  like today, I feel afraid and worried.  

    I've never had blood cough,  it must be terrifying.  It's so helpful to read everyones' posts.  Good luck to you.

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    • Posted

      murphs...I am like you...I am grateful for my blessings also...so days are better than others....I try to go by "One Day at a Time"...

       

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