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My life with bronchiectasis.
I am 30 years old and was diagnosed with bronchiectasis at the age of 12 after having a CT scan and bronchoscopy. Before that time, the doctors thought it was asthma but became suspicious when I did not show any significant improvement on various asthma medications. As a got older i started to smoke and i have never felt worse.
As a 2-year-old I got a few infections, including RS virus and when I was 4 I got meningitis.
At first the doctors thought I had asthma since the spirometry showed obstructive signs. I had to test all asthma medications that were available without them having any major impact on lung function.
Allergy tests were also taken steadily which were negative. There was also an attempt to take a sweat test, which I only managed when I got older, this test came back negative.
Only when I was 12 years old did I have a CT scan and bronchoscopy which revealed that I had bronchiectasis.
My lung function has always been at LLN and from 18 to 26 I peaked with an FEV1 of 3.6 L and an FVC of 4.7 L.
I have always hated the lung disease and everything that came with it. As a child, it felt like 10,000 visits to the pulmonologist and far too many hours in the waiting room. Worst of all, it was psychological since I had to use a nebulizer device in front of all the children at school, I had a high mucus production which I used a lot of energy to hide. when I got older I stopped taking medicine as I never felt any difference with it, it was certainly not something that was to my mother's liking. I was very active even though I didn't take part in any sports activities, and perhaps most of all I was a mischievous boy. When I got older and started high school, there was increased pressure around drug use, which I unfortunately became a part of. I have smoked weed regularly with a particular escalation from when I was 26-30 years old.
Today I have stopped smoking, perhaps most of all because I don't feel well anymore. It doesn't take much force before I get a wheezing breath, maybe just above the force you use during exercise. This has proven to be a challenge when it comes to bringing up mucus, which drives me nuts. Strangely enough, it seems as if I have a low mucus production today, but I still feel that I am congested because I have mucus in my lungs.
Now there are 3 periods in particular during the day that are bad, when I get up, when I eat and when I go to bed, during these periods I feel very congested and try in vain to bring up mucus. I've started taking way too much ventolin to make me feel a bit better (I think). I struggle with the fact that I can't speak without getting a sore throat, I can't laugh without my throat also getting sore and that I feel a tightness in my lungs. This has put a stop to my life, I feel like I can't attend anything with friends because I'm afraid of feeling congested in my lungs when I'm not at home. oh boy did i dream of a time machine where i could go back and give myself a real slap in the face.
When I was 26 I felt a slight change in my breathing and went to take a test, there I got a fev1 of 3.6 L and a fvc of 4.7 L. It was completely unchanged from previous tests in 2011 (18 y.o) which I thought was very strange. The doctor came up with a bunch of prophecies about how my life will be if I continue to smoke, Some of them include that I would struggle with my throat, my psyche and that there was a good possibility that I would die before I turn 50 because I will eventually have a sudden development in the lower lobes of the lungs and maybe more.
recently I have been to 2 different pulmonologists, one for a short visit and the other for 3 weeks.
I have increased lung capacity by 12% both in fev1(4,06L) and fvc(5,28L) and after a bunch of tests it was declared that there was no objective reason for my symptoms. It has been difficult for me to understand as I have never felt so congested before, I have also tried to tell what the previous doctor told me but no one seem to agree with him. The previous doctor's prophecies are true to the letter, but here I sit with what seems like a miracle of some lungs that "lie" to the doctors. Now i dont know what to do anymore..
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