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Finding Pneumo
The Pneumothorax Community
Recent 
27th-Dec-2005 09:27 pm - So, this is pretty cool.
I remember when me and mongolbbq were the only people on LJ who had pneumothorax listed as an interest. It's comforting to know we weren't really alone!

I guess I'll introduce myself and what I have to do with the topic of this little club. I'm Amanda, 24. I had a series of spontaneous pneumothoraxes in early 2000. There were hospital stays, chest tubes and just plain waiting around to see if things would seal up, but what finally ended up working was removal of the uncooperative third of my left lung. I haven't had any major problems since then. Just a little odd pain or two every now and then (which I found out was called "costochondritis" - a mostly harmless and quite common form of chest pain caused by inflammation of the cartilage in the rib cage), usually after a good cold or sinus infection. It can sure scare anyone whose had a pneumothorax, though. After that we get a little paranoid about any stirrings in the chest region, ey?

Interestingly, like spontaneous pneumothoraxes, they say the cause of costochondritis is unknown. But I'd be interested to know (and not very surprised) if many people who've had pneumothoraxes go on to experience costochondritis as well.

The whole pneumothorax thing was an interesting experience, especially to have during ones senior year of high school in a town one just moved to. But, as much as it obviously sucked, it prepared me for adulthood by chilling me out and teaching me that I can't be in control of everything I see. Or at least it prepared me for college, which I won't pretend is exactly adulthood.

I often wonder, as I'm sure most patients of the spontaneous variety do, what might've been the cause of my collapses. There are plenty of theories. My mom's convinced it's because we lived in a house with a gas leak while she was pregnant with me. My dad's convinced it's because I've had asthma all my life. A doctor I talked to recently did thesis work on the possibility of there being a genetic factor of some sort.

My ideas aren't that easy to pinpoint. I know I don't like the use of albuterol for asthma treatment. I believe it damages and weakens the lungs, and I wouldn't doubt if having taken it throughout my childhood had something to do with matters. But, overall, I think the causes of it - and any "idiopathic" disease, really - are unknown because they are complex and different for different people. There are a lot of forces in the world, and when certain ones, not even always the same ones, come together, I'm sure they can evoke certain reactions in our bodies. Life's like that. There are people who can eat Sweet & Low by the spoonful and smoke every day of their lives and never get cancer, then you find people who go out of their way to eat right and not contact carcinogens who are on chemo at age 30. We haven't even begun to understand it yet. That's why I'm always interested to hear others' experiences and see what I can learn for myself.

Anyway, that's my story. *waves*
10th-Nov-2005 11:55 am(no subject)
Hello everyone, my name is Matt and I'm new to the community. I just had my 2nd surgery on my right lung, which has had numerous pneumos over the years. Most of you who have had a pneumo probably had a small chest tube, or the surgery involving 3 small incisions and a scope. Well, just as a warning, if the scope surgery doesn't work, the next option is a surgery which involves making an incision between the ribs all the way up the back inbetween the shoulder blades. The ribs are pulled apart to make room, and they fill your ribcage with water. The blebs are found because they make bubbles and they are stapled, like the scope surgery. The surface is roughed up and you are sewn back together. Recovery time for this one is a huge 6 weeks instead of the 2-4 from the scope surgery. I was just about to start a new job and finish up the semester at the University, but spent a week or so in the hospital with a chest tube and morphine and am sitting at home now trying to catch up on all the schoolwork now. :( Hopefully no more blebs will appear. I never would've expected another pneumo after the scope surgery, which I had about a year and a half ago. Anyway, back to work. Good luck to all of you who are living with this reoccuring problem too. It's both comforting and kind of sad that there are so many of us. haha.
6th-Nov-2005 11:52 am - illustrations




Found through MedlinePlus.gov. I'll make an icon for the community using one of those pictures.
27th-Sep-2005 04:50 pm - hi!
so glad to find this community! i had my first spontaneous pneumothorax in my right lung in 1997, when i was 16. they suspect i got it while overdoing it in weightlifting (aka gym class where we farted around the weight room and occasionally picked up a barbell). it resolved on its own after about two weeks. my second, also in my right lung, came about in may 2004, and i had surgery to repair it. read about it here. since then, i've been fine... been on numerous airplanes, etc. no pain at all. hopefully it won't happen again!

i feel like such a slob though, because i haven't really exercised since my surgery. i'm short and thin (5'2, 115 lbs), so obesity was never an issue, but i can't be inactive forever. right? what kind of activities do you guys do to keep in shape? cardio, yoga, other? i'm a little hesitant to lift weights because... well you know. oh, and having kids. i'd like to do that eventually. will the strain from childbirth cause another SP?

well, that's it. thanks for listening. glad to be here!
12th-Sep-2005 09:53 pm - LiveJournal is awesome..
On the night I had my first pneumothorax, I made a phone post to let my friends know what was going on. I thought I was just having a severe asthma attack, so I just waited for about 6 hours until I couldn't stand it anymore and had to go to the hospital..
9th-Sep-2005 01:57 pm - Curious.......
thoughtful
I was wondering what the cause was for each of your pneumothorax episodes? EG: Lung disease, blood clot, loud base, ect...

I'm also curious about the feelings of fear. Does anyone else contantly fear it happening again?

And how many of you had the side incision, how many the chest?

So many questions....

My story started with the collapse lung, and deteriorated from there. But it turns out that mine was a blood clot on the wall of the lung. I had 3 blood clots stuck on different areas and it caused massive complications.

September 27th was my one year anniversary for the collapse. Today is the one year anniversary for 3 flatlines. I guess today is my re-birthday. I'm officially one!!!

My whole story is written on my page. Feel free to read about it.
22nd-Jul-2005 12:32 am - quick update
amelie eats
went to the hospital a little over a week ago because pain in my lung was getting worse
Was given a Flovent puffer and some nasal spray to try and clear up whatever i have.......lung still hurts a fair amount and im sick of being sick!!

also the puffer is bad for oral yeast infections and although i've been rinsing a ton with mouthwash, last night i noticed the start of an infection so im eating lots of yogurt...looks a lot better today but my lung hurts more and i have to clear my throat like every 5 seconds....plus i feel like...strained to talk...

I HATE THIS! :@
16th-Jul-2005 02:51 pm(no subject)
I think this was briefly mentioned earlier, so I'd like to expand it into a (potentially) bigger discussion.


What kinds of physical activity are we generally limited to and should avoid? (Say, after your 2 or so weeks of healing-and-absolutely-no-activity?)
2nd-Jul-2005 09:25 pm - A place like this...
002
I think a community like this could be very useful, especially for those just going through the illness or those in recovery. I'm glad I got an invite here. I have suffered from pneumothoraxes in the past and I’m having a good run without any relapses. I hope everyone is well.
27th-Jun-2005 05:46 am(no subject)
Did anyone else get a volumetric incentive spirometer? Mine goes up to 4000 mL, and I'm supposed to be reaching 1500.. but I can only get up to about 1250, and it really hurts to continue breathing through it.
21st-Jun-2005 05:59 pm(no subject)
Well.. I've had two pneumothoraxes (both on left again) since the last time I posted. I won't bore you with the details, but for the most recent one (just a few days ago), I had surgery. They put talc (similar to baby powder) so that my lung would 'stick' to the wall.. and hopefully, it shouldn't happen again.

I wish I knew what the surgery was actually called, grr..
27th-May-2005 12:18 am - little update
amelie eats
finished all of my exams! started work! woohoo.

Had relatively few problems. Ummm...Sometimes I get like...pulsating pain on my left side but not like it's collasping..

Today I saw my surgeon. I was given antibiotics to kill of bacterial infection he thinks i may have (been coughing up crap and stuffed up since Jan. and the puffer isnt helping!)

My chest tube scar is healing well.... Have to go back in 3 months and have an x-ray. If it's not alright then I go in for another round of surgery! Oh joy!

anyway, that's about all for now...

-Heather
26th-May-2005 04:48 pm - Oo..
So, this community is relatively new. I'm expecting many more members as time goes by.

my story, which is rather lengthyCollapse )

I was told to go back to the hospital for an x-ray checkup on Monday, May 23. They were probably sent to my doctor's office, and I just now called him about an appointment (directed by him, but he wasn't in the office today). I'll receive an answer sometime soon. (*Edit: They just called and said my x-ray looked fine. I won't be needing an appointment unless something's wrong!)

Anyway, pneumothorax has certainly been quite an experience for me. I didn't think many people were affected by it, but as I told my story to a schoolmate and teacher, they each knew a person who had experienced a collapsed lung (one seemed to be spontaneous and he had to stay in the hospital for about a month, the other from an accident).

I'm glad this community exists, and I'm looking forward to seeing new members.
28th-Apr-2005 11:00 am - First Post!
amelie eats
Hello,
I know this probably won't get a lot of members because not everyone experiences pneumothoraxes! I couldn't find a community about the condition, though, and it's affected my life in a great way.

In June 2002, on my last day of highschool I had my first spontaneous pneumothorax. My lung was x-rayed and said to be about 40% collpased, so it was left to heal on it's own. It was fine until November 2003 when it collpased again as I was sitting at my computer. This time it was only about 25% collpased, but it wouldn't re-inflate and so I was booked for surgery. From November 2003 to Februrary 2004 my lung was collapsed. It got worse in February as I got a cough and sort of coughed it down more. I had surgery on February 12th, 2004 and was in the hospital for 10 days. I got the VATS (Video Assisted Thoracic Surgery). On the 10th day I signed myself out because I was fed up. My lung was still 10% collpased. It eventually got back to normal and I got check and was supposed to be fine. I was told there was a 1% chance it would happen again. Lucky for me, the odds were against me. In June 2004 my lung collpased yet again, when I had mononucleuosis. It was not large so the doctors left it to heal, and it did.

Finally, April 19th, 2005, my lung collpased yet again. This time it was shortly after I woke up and by the time I got to the hospital the surgeon said my lung was 50-60% or more collpased. I was given a chest tube, put on the highest suction, and moved to another room. It didn't get better, actually got worse, so I was sent to Halifax to see my original surgeon. From there I saw two different surgeons and I was supposed to get surgery "tomorrow" for about 3 days. They decided that my lung was well enough to go without the surgery since it would be a lot more major than before, cutting me right open. So on Day 8 of being hospitalized, my chest tube was removed, and although I still had a small pneumothorax, I was released to go home. Now, here I am! I get my stitches out in a few minutes so I have to end this soon.

I was told the next time it collpases (and it "most likely will") I will go straight to surgery. I managed to miss all of my University exams and am trying to reschedule them now, and also have to delay working this summer! Pretty crappy...Plus in the midst of moving back home. Gah!


Anyway, that's my story in short!

-Heather
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