quasadu (quasadu) wrote in pneumothoraxes,

  • Mood:

Short of breath or long winded?

Prompted by raventhon's post, I thought I'd post my own introduction/story of my experiences with spontaneous pneumothorax. I've never discussed it, more than a few words here and there, with others who've had the same experience. After 16 years I guess now's as good a time as any.

So where to begin? I guess with my first pneumo. The first one happened when I was 14 years old. I remember lying on the couch in my parents' living room and feeling a strange pain in my chest. I don't think I'd been doing anything strenuous before that, I think I was watching TV. Anyway, it felt like pressure but it also felt like there was something gurgling around in there. I thought there was something wrong with my heart, at first, and that's what I told my mom. She took me to the emergency room where I got some chest X-rays... the details are hazy to me now but I do have the distinct memory of the doctor taking us back into his (or someone's) office to show us the X-rays, rather than just telling us there in the ER. Scared the hell out of me and Mom.

He showed us the pneumo on the X-ray and explained what it was. If I remember correctly, it was a small one and I wasn't given a chest tube. He sent me home and told me to rest and if it wasn't getting better, or if it got worse, to come back to the ER. Well, it sealed itself up and things were fine.

I got an appointment for an MRI, but I think it took another collapse before that happened. Like I said, the details are hazy. At any rate, I got the MRI and was told that there were blebs on the surface of my lungs, sort of bunched up like grapes (that's the way they described it) that would pop and create a pneumo. Yes, I'm, tall and skinny, and they told me all about how this sometimes happens to tall, skinny males. At some point I think I was tested for Marfan's Syndrome, which was negative.

So, I'm not sure where in the chronology of those early days I got my first tube, and I don't remember how many collapses I had before they brought me in for surgery, but eventually it happened.

My first surgery was the day before Halloween, 1990. They cut open the left side of my chest, scraped all the biggest blebs off the lung, slathered it up with talc (or whatever it is they use) to basically glue it to the chest wall, and stitched me up. I spent several days (more than a week?) in the hospital recovering, with a tube in my chest. There were some rough times. There was no epidural then, either because I was only 14 or because they just hadn't figured out that they could do that for thoracic surgery yet, I don't know. Anyway they had me on morphine drip and every six hours or so they came in and gave me an injection of some kind of local anesthetic. There was one night when they missed that injection and I was in excruciating pain for several hours. I think I may also have twisted or pulled the tube in some way, making it much more painful.

Anyway, after that was all over they told me that it wasn't a question of if I would one day need surgery on the right lung, it was a question of when.

When was four years later. Again, I still don't remember all the details but it basically went down the way it always does. You feel that distinct pain, that pain that nothing else feels like, and you just know. I was in my bedroom with my girlfriend (no, we weren't engaged in any strenuous activity *snerk*) and it hit me. I went upstairs and woke up my Mom and told her "we need to go to the hospital." Without hesitation, she was up nd we were in the car and on our way. Mom's real good with these kind of situations. She's gotten lots of practice. :)

So, same story; chest tube, admitted, surgery in the morning. This time they did laproscopic surgery, so I didn't have the great big smiley scar. Things went much more smoothly, I guess, because I don't remember as much about that time as the first. I do remember that I was once again on the morphine drip but not the six-hour thing. I guess they did something else to manage the pain but I don't recall what it was.

After that surgery they told me "well, you're fixed. This shouldn't happen any more."

It happened again seven years later.

Now, there's a lot of speculation about why it happened again. As stupid as this is, I did smoke for maybe a year or two in there somewhere, but I quit long before the next collapse. I later ended up working in a job where I was the only one who didn't smoke, in a building with no windows and bad ventilation (I also think there was mold in the ducts). It was a small business in a small town in Virginia, so there really wasn't any legal action I could take to get them to stop. I appealed to them to stop, and they kept agreeing to, but whenever I would leave the room they'd light up again. Yeah, I should have quit, but I liked the job (if not the people).

Anyway, whether that caused my relapse or not, who will ever know? The point is that in January or February of 2001 I had another collapse, on the right side, and went into the hospital for a chest tube and a 36 hour stay. No surgery, but I was told "if it happens again..." I stayed out of work for about two weeks, and they did stop smoking in there for maybe a month, but it didn't matter because in March I was back in the hospital. This time it was the left lung, and they opened me up again to scrape more bits and glue me back together again. This time, though, I got an epidural, and the pain was managed much more efficiently.

I was out of work until the end of April, and when I came back I was let go. I was told it had nothing to do with my health, that it was because the quality of my work had declined. And it had, because my caring had declined since they obviously didn't care about my health.. but I digress. Getting fired was a good thing, because it made me realize that I didn't want to be stuck in Shittowne, VA for the rest of my life working in places like that. So I went back to school.

Things were great for the next three years or so. I graduated with an Associates degree from a community college, Summa Cum Laude even, and transferred to Virginia Tech. Moved in with a lovely young woman who I honestly thought I would marry one day. It seemed to me that the 2001 pneumos and the firing had been the best thing that ever happened to me. In a way I still think so. But all was not peaches and petunias. Remember how the right lung collapsed, but they left lung was the one that later got the surgery? Yeah well, you know what's coming.

In the summer of 2004 the right lung went down again. Back to the hospital for surgery number four. Things were pretty much the same as the last surgery. Unfortunately there were some negative side effects. My girlfriend was aware of my condition almost from the time we started dating, but knowing something bad could happen and seeing it happen are two different things, and I think she got scared. So she left. That's a long story in and of itself, with which I won't bore you, but let's just say that it left me feeling a bit upset. I mean really, I felt like things were really bad. I was supposed to be fixed 10 years ago. They can only do that operation so many times, you know? There's only so much tissue to scrape off. The more often they do it and the more often I have a pneumo, the more likely it is that it will happen again. Is this gonna kill me one day? Am I gonna need a lung transplant or artificial respiration when I'm 40? So add to these fears that the woman I loved couldn't take it, couldn't be my support when I needed it most, and... well suffice it to say I've had a hard time coping for the past couple of years.

Anyway, that's kind of a digression. I'm feeling much better now. I'm become a nazi about people smoking around me, and I won't go into bars, restaurants, or any place that allows smoking indoors. And as soon as I graduate (in a month) I intend to move to a city that doesn't allow smoking indoors. Because while I don't know for sure that it's really making a difference if there's smoking, I sure as hell ain't takin' the chance.

So that's my story. Sorry it's so long and I hope I didn't bore you too much, but I've never really sat down and written about it. I guess I kinda needed to get it off my chest (decide for yourself if that pun was intentional or not). So, thanks for giving me a place to do so.

Oh and PS: I was going to post pics of all my scars, but they're really getting hard to see. If I had a really good camera (and someone else to get the shots of the scars on my back) then I'd do it. Maybe another time.
  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded