I've been checking my stats and it's amazing how many people find my blog by searching for information about spontaneous pneumothorax - and they end up at Part 1 or Part 2 of my story. Since Part 2 ended on kind of a downer, I figured I should add an update to hopefully lift the spirits a bit of those going through an experience similar to mine - and maybe even answer some questions that I'm seeing asked in the search terms some of you are using to get here.
The short version is I'm feeling better. It's been an incredibly long, slow, laborious process, and I am by no means back to "normal" yet (whatever that even means anymore). I still feel pain, I still feel tightness in my chest, and I still occasionally feel the pressure that scares me into thinking another collapse is coming on. (That hasn't happened.) But it's all lessening over time. It's such a slow improvement that it can't be measured day by day or even week by week, but I'm finding myself doing things I never could have even a few months ago - including going to concerts and doing yard work. I'm basically back to living a normal life; my pain and discomfort is at a level now where I can usually ignore it.
I will say that I got to this point partly through a new prescription to painkillers - specifically Oxycontin, which is basically time-release morphine. In my search for relief, I finally found a good pulminologist who was actually willing to listen to my complaints and who recognized the debillitating nature of my pain. I was referred to a pain specialist, who prescribed the Oxycontin. It has definitely helped, although I don't take it as often as I could - and it's those days when I don't take it that make me realize that I probably truly am improving. It's not just the medication.
So the moral of the story is, while I still don't recommend the surgery I had for anyone on only their second pneumothorax, I no longer feel like my life has potentially been ruined forever. I do still feel like I made a mistake, and I would still say that the surgery I had is not worth 100 chest tubes. If you're on your second or third pneumo, don't do it unless you absolutely have to. And if you do have to do it, be aware that you may be out of commission for a long, long time. My pulminologist told me approximately 20% of patients have a similar experience to mine after a pleurectomy, even through VATS.
Now for some of the questions some of you seem to have:
Q: What does a pneumothorax feel like?
A: My two collapses were a little different. The first started out like a fluttering sensation, with building pressure inside the chest. The pain came later. By early the following morning, I could barely stand up from the pain, and the pressure inside was enormous. This ended up being misdiagnosed at the hospital, so I have the benefit of probably being one of the few people that can tell you what living with a pneumothorax feels like over a period of weeks. And honestly, the pain does lessen some - but it never goes away. You will notice decreased breathing capacity. Don't take the lessening of pain as a sign that you're getting better - it could just be that your body is getting used to its new configuration. This can actually make it harder to recover later.
My second collapse involved no fluttering or pressure - I was fine one night, woke up the next with the same pain on the left side of my chest. It feels like what you'd imagine a heart attack would feel like.
Smaller collapses might not hurt as much, I don't know. My first one was about a 40% collapse; second one was close to 100%.
Q: Will a pneumothorax resolve itself on its own?
A: Some do, but you need to see a doctor and have an x-ray. The doctor who caught my first told me there was a 50% chance I'd need a chest tube; it was borderline. I guess it depends on how big it is and where in the lung it is. I obviously ended up needing a chest tube.
Q: What causes spontaneous pneumothorax?
A: Nobody knows the root cause. They think smoking makes it more likely, but I don't smoke. They know it happens more often in people with my body type, which is tall and thin. There's no way to prevent it. There's no cure once you've had one. If you're susceptible to collapse, there's nothing you can do about it short of the surgery I had - which obviously has major downsides and risks.
Age is a factor - it's less common in people over 40. So it is possible to "grow out of it", although there's no guarantee you will.
Q: If one of my lungs collapses, will the other collapse at some point too?
A: It might, it might not. I'm dealing with this uncertainty now myself. Nobody can tell you for sure. Again, if you're susceptible to pneumothorax, then there's a good chance both lungs could collapse at some point (hopefully not at the same time, though it's possible). But some people do only have problems on one side or the other. My right side has never collapsed, only my left. I'm hoping the right side never does.
Q: How common is this, anyway?
A: It's more common than I think most people know. The statistic my doctor gave me was 1 in every 9,000 people. So it's not like catching a cold common, but it's not some sort of exotic rare disease either. It doesn't get nearly enough press given the size of the issue and the problems it can cause, if you ask me.
Well, that's it for now. If I have any more news, I'll post another update. In the meantime, feel free to ask me any questions you have, either in the comments here or by email.