Need some help and support
Posted , 8 users are following.
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.
0 likes, 36 replies
loveyourlungs
Posted
Operalyn loveyourlungs
Posted
That's great news. Believe me we all get our dark times especially after a nasty bout of bronchial trouble but believe me you can live a good life if you take care of yourself. You should have seen me singing my head off at Rock Choir rehearsal last night!
loveyourlungs Operalyn
Posted
It seems you have it under control. I read your other posts in this forum, and I must say I am very much impressed by how you can handle this. I think in this case mental state is very important, as lungs always react to stress and this is how it gets even worse.
I have a little bit of wheezing, it's 3rd day now and it's not going away, yesterday I coughed out such a terrible thing, I got scared again, don't want to go to the details, but it was big, thick, green and even dried up (how it is possible???). Maybe it's due to sinusitis? I don't know. I panicked again and don't feel very good today. I know this might seem stupid... It's just I guess I'm on mu rough patch right now and I need to start handling this better.
Thank you again, you have been helping me a lot. I appreciate your time and effort x
Operalyn loveyourlungs
Posted
Don't panic - I've coughed up all sorts over the years and I have to clear my lungs every day of masses of sputum. Be glad it is out! If you cough up blood no need to panic initially and if it's a small amount. It's common with bronchiectasis. If it persists you should see your GP. Keep calm. And rest as much as you can. Xx
loveyourlungs Operalyn
Posted
loveyourlungs Operalyn
Posted
Operalyn loveyourlungs
Posted
Have a hug. I have shed bucket loads of tears in my time and have been very angry too and full of self pity. You're only human - do your best and that's all I can say.
Operalyn loveyourlungs
Posted
If serious bouts of coughing permanently damaged your lungs I would have no lungs left. I don't cough violently all the time but I've got a cough like a serious smoker. And as I said my lung damage dates back to when I got measles when I was 1. It might be a bit worse but I doubt it. I had a CT scan recently (for other reasons) and things were much the same. Don't look ahead just deal with things as they are. My bronchiectasis is considered mild and yours sounds as if it's very mild. It could get worse over the years but one bad infection, one heavy bout of coughing is unlikely to cause too much trouble. See your doctor if you're worried. X
loveyourlungs Operalyn
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loveyourlungs Operalyn
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loveyourlungs Operalyn
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Operalyn loveyourlungs
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I met my husband 45 years ago - he was a long haired DJ in a local pub - 4 years younger than me. We got together after I shamelessly threw myself at him by hanging round the Disco! We've been married 44 years next October. He knew I had bronchiectasis from the beginning - well I have a rattly cough and in those days got a lot of infections so I couldn't disguise the fact. I produce a lot of sputum too so I was terrified he would find that repulsive. He is a kind bloke and he took it in his stride. We've had no children. He was too worried it would be too much for me and I was pretty ill in my 30s. People do have children with BX. By coincidence the woman who lives next door has BX too and she has two strapping lads! I am not making light of any of this. I have been in despair and sorry about having no children . Work wasn't easy sometimes either - people weren't always kind. But I am 70 now and I am glad to be here and still happily married.
loveyourlungs Operalyn
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pam81116 loveyourlungs
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Hugs Pam
loveyourlungs pam81116
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pam81116 loveyourlungs
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Hugs Pam