Need some help and support

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Hello all, I often read this forum, but now I decided to tell my story as I have been very down lately.

I have a very complicated story. I am female, 29 years old. Been diagnosed when I was 24, after a serious of wrong diagnosis and “bronchial asthma” since 2010 (only lately I found out I never had asthma).

Then my condition was getting worse, my pulmo changed meds, but nothing seemed to help. Asthma flare ups got more freaquent, mecidine - less effective every time. I was about to give up... but then I decided to change my pulmo. She immediately said I had no asthma as my tests were not showing it. She did a bronchoscopy, a CT scan and got my diagnosis - mild bronchiectasis. But it was weird then - she said there was nothing I could do, just try not to get ill??? I decided to change doctors again.

I found this surgeon, a professor that specialoze in BX. I contacted him and asked for help. Also, I read surgery sometimes is an option. So the professor took me in, performed another bronchoscopy (as, according to him, the previous one was not done properly), washed my lungs and confirmed I had a super mild case of BX. He urged me to get off all of the meds as they were not needed and go back to him in case my lungs start bothering me again.

So I lived my life for 5 years. Had no chest infections since 2013! Got flu or cold a few times a year, but never anything in my chest. Felt healthy! In spring of2017 went to the surgeon again, he checked my lungs and said everything is perfect! Until...

Until December 2017. I developed cold and started coughing. My GP diagnosed me with bronchitis. I panicked. Did it mean my BX came back??? After a few weeks of coughing and not being able to live my normal active life, I visited the surgeon again. He did bronchoscopy, CT scan and this is where it got weird.

The radiologist whp performed the scan wrote: no abnomalies, no BX in both lungs. My surgeon said: she just probably missed it. So I decided to see another doctor. I found this lung professor, showed him my tests, CT scan, he said: no, no bronchiectasis. So weird! I went to the surgeon again, bu he said: no, I see a very mild case!

So I decided to get a 3rd opinion. As I needed to know how to live my life: like I have BX or like I don’t. So I went to a 3rd professor, also a surgeon, but in my country it seems like surgeons know about this disease better! Weird also, but some of the pulmos I tried did not even know BX! Or how to treat it! Anyways, this 3rd professor looked at my tests, I went to him because he is the best in my country and he was recommended by other BX suferers. He said I have some changes in my lower lobes that could be considered as very mild BX. Also, that I probably had it since childhood and I have not yet developed a so called bronchiectasis disease. Basically, as he explained, changes my lungs are so little that they should not be a big problem for me, this is why I had not had an infection for 5 years. It just means I have  a weak spot and I should keep in mind not to run in winter time, etc. And that I shouldn’t worry, as this kind of BX is not prone to progress. I was so happy! I finally started sleeping at night. Weeks passed and my lingering cough went away, my health was perfect again. BUT

Last week I got flu, 39•C, really bad case! Of course it went to my lungs... my GP prescribed me anthibiotics again as she suspected another bronchitis. I want to her after 4 days, she said my lungs are clear and the caugh is from sinusitis. And I got really confused.

Was it sinusitis? Or was it so called flare up? But if, according to docs my BX is so mild, how come I got second bronchitis in 2-3 months? I am really confused. And depressed. I feel like this time it’s not going away and I am stuck to feeling like this for the rest of my life. Is it possible my BX progressed in only 2-3 months?

I know my story might seem weird, but I am really scared. I think of the worst possible scenarios. And I get down and feel alone.

Sorry for my long post. I hope you all are feeling better than I do.

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  • Posted

    Hi,

    Please don't worry smile

    Sinusitis is very common and nothing to worry about. You might have mild allergies - many of us do - and this causes the sinus infection, which normally clears up on its own and no antibiotics are needed.

    Everybody gets colds and even bronchitis now and then. This definitely does NOT mean that your BX is getting worse.

    I worry a lot too, but what is really helping me is meditation and mindfulness. It stops the worry and I'm able to accept my imperfect life and even embrace it for what it is. It's very freeing and I highly recommend it.

    Relaxing your mind goes a long way in relaxing your body, which promotes much better health.

    So; that's my prescription; Meditation and mindfulness and if you want to go further; Buddhism. Its sets you free and you are able to enjoy life - whatever it brings you.

    Best, 

    Ida

     

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    • Posted

      Hey Ida,

      Thank you for your reply and positive message. I hope you are right and I will try your advice as well. 

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  • Posted

    Sorry you're so down. I wish more doctors understood bronchiectasis better. It seems your last specialist understood best. Bronchiectasis is lung damage caused by lots of things. If it's very mild that's absolutely great but you will get ill like anybody else and because you have this weakness you may get an infection or a cough. Sinusitis goes with bronchiectasis (don't ask me why - no doctor has ever explained it to me convincingly) and it can flare up from time to time - its a bit miserable but it's not serious. Just treat your respiratory problems as part of who you are, but not all of who you are, look after your health by eating properly, drinking plenty of fluids and resting when you're tired. You can live with this. I have for nearly 70 years and I have had plenty of good times along the way. Good luck!

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    • Posted

      Hello, thank you for your message. I guess I just forgot I have it for the last five years and now when it's back, my panic is back as well. I do hope I will manage my worries as I don't think it's good for my lungs to worry as much as I do. Basically, for the last two weeks I have been worrying and having bad thoughts... Thank you again

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  • Posted

    Hi there. My name is Sue and I live in north Wales. I was diagnosed with very mild Bronchiectasis 6 years ago. I was also told to go away and come back when it is worse. I am seeing some changes now. Coughing a little and struggling with inclines. Are you in the UK?

    Where do you find these Consultants ? I have never heard of a Bronchiectasis which doesn't worsen.

    How do you get to speak to Surgeons? Do u go private?

    ?I feel like I have just been left to wait for the big life change as symptoms become worse as does damage to my lungs.

    ?I too get depressed. then I feel guilty as some of the forum users really have it bad.

    ?I am constantly looking for therapies. I registered with Bronchiectasis news weekly. I recommend you register. There are a number of stem cell trials the latest of which comes from China. I worry that as it is only at trial stage will it be a therapy recommended within the time it takes to become really poorly ( I also think about these people on the forum who are really poorly).

    ?My moods fluctuate daily- sometimes I am ok, others feel like I am in a big balck hole which is only going to get deeper.

    Sorry you fel bad at the moment

    ?Register at Bronchiectasis news, I sometimes feel hope when I read about new therapies.

    Hope you feel better son.

     

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    • Posted

      Hello Sue, thank you for your message. Do you mind me asking how old are you? Or how old were you when you were diagnosed? Why do you feel like it's getting worse? 

      I am not from the UK, I found these consultants basically googling and looking for specialists who did any academic work related to BX and these people did, also, some of other patients recommended as well. 

      Let's be strong together!

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    • Posted

      Sue I have had bronchiectasis since I was a year old and it was worse when I was young - possibly because I didn't take good care of myself like all teenagers. However my condition is really stable and every time I go to see my specialist the lung function and blood oxygen etc.are more or less the same. My lungs are colonised by pseudomonas too. I get infections of course and have days when I am terribly tired but basically I live a fairly normal life. You don't necessarily get worse as you get older. I may live to eat those words but my spirometry tests have been more or less the same for over twenty five years. I do my physio every day, take the antibiotics when I need to but that's about it.

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    • Posted

      I can only report my own experience of course. And things change but I am 70 and live a good life. Hope you do too - you will get bad patches. I have had a few in my time! But keep on truckin as we old hippies used to say!
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    • Posted

      What I need to do now is to learn and manage my emotions. I seem to overpanic everytime and that does not help my mental health or my lungs. I learn strenght from you, thank you again.
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    • Posted

      Yessmile

      I have mild bx as well and my problem has always been my fears and worries that the worst will happen.

      I'm learning how to deal with my worrying thoughts through meditation and mindfulness and it's helping a lot. It takes a while to learn, but the results are so worth the effort.

      Maybe check out some youtube videos of Tara Brach or join an MBSR program.

      Best,

      Ida

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    • Posted

      If it's mild and your symptoms don't change your have every reason to live to a ripe old age. My professor told me that and I'm 70 now and not planning on popping off just yet!

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    • Posted

      Sue I am so sorry to hear this. I hope you are getting proper help and support and have been referred to a specialist. Help is out there - I have been a patient at the Brompton Hospital since 1989 and the help I have received has been invaluable. I wish you all the very best and hope your condition stabilizes with the right help.
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  • Posted

    I was diagnosed with BX when I was 25, I'm 69 now. But I have been able to leave a full life, and still do. I cycle and play tennis regularly. My health fluctuates, but what seems to happen over time is that the anti-biotics I'm prescribed become less effective after a few years. My consultant then changes the ABs and I am relatively well for a few more years, with about 2 or 3 infections a year. Last year this increased to 6 infections so I was persuaded to take a low dose AB daily. I started this three months ago and so far I have been clear. So I think it's important to have your condition monitored and your medications adjusted as necessary.

    In the 40 years I've lived with BX the treatment has improved considerably. My lung capacity has actually increased since I started taking one puff of Spiriva each morning. This medicine appears to dry up the mucus secretions, thereby increasing lung capacity. It is alarming that there are so many different medical opinions and treatment preferences for BX. I live in London and am fortunate to have good GPs and and access to excellent hospital based specialists at UCH, London.   

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    • Posted

      Hey John! Thank you for your reply.  Another positive message. I hope I will be able to manage my condition better as well. Thank you!
      Report

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