Hello, and welcome to the group.

Your history sounds a lot like mine. I also was always told that my repeated pneumonias and other infections were caused by my asthma. At the age of 9 I was told that I'd have the heart and lungs of a 90-yr-old by the age of 30, so I didn't expect to live long either. I also had a lung puncture at the age of 5...nowadays the scar has faded but it pulls when I lay in certain positions and hurts sometimes.

Like you I've been diagnosed with bronchiectasis, but have very low IgE. I have even been told at times that I didn't have asthma despite my history. Because my IgE is so low I repeatedly get told that I don't have allergies despite the ridiculous numbers of reactions I have.

I'm glad that you've found us and that you are getting some answers.

If it doesn't bother you to talk about it, how did you get your lung puncture? I was in a 1974 pinto station wagon and my mom was driving. I was sitting in the front seat and the seatbelt buzzer kept going off because back then the minimum weight to make it stop was much higher than my weight. It was rush-hour traffic and the buzzer was driving my mom nuts, so in frustration she told me to get in the back. The back seat was down in the cargo position, and in that model, a black metal post stuck straight up out of the back of the seat. Moments after I got in the back, mom had to slam on the brakes to keep from rear-ending someone and I went flying and landed on the spike. I was very lucky because it missed my heart by an inch or 2, and by the time the doctors in the emergency room saw me my lung had started sealing itself. My mom still tortures herself over it.

Mine was a really bad lung infection that was again untreated and so the inner lining of my lung leaked air into the space between the inner and outer lining of my lungs! Yikes! That's when I was diagnosed with cf, but nothing ever came of that diagnosis. With the CVID/bronchiatsis diagnosis I realize that my lungs were probably really scared up even then and so that must have had something to do with it. Thank goodness that it hasn't happened again!

It's pretty common for us to be checked for CF on the path to CVID diagnosis. You were actually diagnosed with CF though? Was it a sweat test or the genetic one?

I've been tested 3 times, the first 2 were sweat tests, and the 3rd was a genetic test, which ruled out CF for me.

I've never heard of an infection causing a lung puncture, that's good to be aware of. I've had pleuratic effusions a few times, but I think that's different.

As far as I have been told the drs told my parents that I had cf, but there was no follow through with that. I do remember having a sweat test but after I got out of the hospital cf was never mentioned again. I did just get retested last week and have not heard anything from the pulmonologist. (Some day I will be able to spell all of these words!) I actually had a numothoroax? which which was later described to me as a punctured lung. My parents thought that my being sick all the time was in my head and I guess that the build up in my system was too much. Isn't this all just a little crazy? I'm glad that I found you guys to chat with because you all have been there and understand. That has been a huge support for me and I don't feel like I am alone in figuring this all out:) What is pleuratic effusions?

A pleuratic effusion is normally called Pleurisy, but sometimes doctors get snooty about it and say that Pleurisy is just lung pain whereas pleuratic effusion is where fluid builds up between the lung "linings" and can collapse a lung without proper care. I understand that it's a form of pneumonia. I've had it at least 3 - 4 times. It's intensely painful and can be treated with antibiotics.

Glad you found us :)

Princess - I have had pleurisy a few times too. Intensely painful is a good description LOL. Im like huh? Isn't that for old people in like the 1800's hahaha! It was described to me once as like a secondary infection - like AFTER you get bronchitis or something. Not sure if that's accurate or not but I am so thankful that I don't get bronchitis anymore because of pleurisy

sounds like me too.
now my new immunologist and pulmonologist are recommending me for national jewish in colorado.
i have a phone interview today actually. they will most likely send me to the infectious disease department there.


i had to get another pneumonia vaccine because i was told i was unresponsive to my last one which means the last one i had was a dud or something idk but this previous one i was responsive too but not by much or something like that

> He recommended that I go with IVIG like I was told but did not
> jump on right away.

interesting. why?


> As I told him my history and that I had always been told that I just
> had asthma and that no doctor ever had red flagged me for

This is a familiar story (probably for everyone here). I was misdiagnosed with asthma in 1998. Everything related to my coughing/breathing issues over the next 13 years simply got blamed on "asthma". Blue puffers (bronchodilators) did nothing, and brown puffers (corticosteroids) did "a bit", but mostly nothing.

Result: if I had not been diagnosed with asthma, I might have gone down a very different path ... they might have found that I had CVID back then. But this is common; according to my immunologist, most people with CVID suffer with it for ~10 years or so before an accurate diagnosis.

I didn't jump on the cvid diagnosis for a few reasons. I thought that it was just asthma, like I had always been told and I had never even heard of cvid! Then I was scared and in denial, ("someone elses blood in me? I don't think so!). I had gone to several "Quack" doctors before and thought, "maybe this one is too?" Then I needed to know everything I could about it and see if it really did sound like me, and boy do I fit the picture! (It is still scary but I at least have knowledge now thanks to you all!) I feel like my parents should have advocated for me and I may have been diagnosed earlier. I did go to the same asthma specialist office as a kid which is kind of weird that they never picked it up. My boss last winter was actually the one to tell me, "Go see a specialist. This is not cool that you are always sick and need to go to the doctors!" (She is a very dear friend of mine, but it was starting to get in the way of work.) I still thought it was "just the way it was". Now that I know, I even wonder if my dad had it and his mom before that? I guess that I just rambled, but it is more of my story:)