Sunday, April 14, 2013

Paging Dr. House!

It's the middle of April. Talk about a blogging FAIL. I had every intention of making my blogging more regular come the New Year (you know, four and a half months ago). When I posted last, I had no idea that the very next day, I would be seeing the beginning of a twelve-week-long nightmare, the likes of which I'd only seen end in an hour on one of those TV medical mysteries.

On January 4th, we were shooting the breeze with some friends over dinner when I noticed I had a weird "crackling" sound when I'd take a deep breath. It had happened a few other times, but had only lasted for a day or two, then would disappear without any other symptoms. I never managed to have any sort of "productive' cough to get up whatever was making that noise, so I never really thought much of it. By January 5th, I had a fever. Hmm, that was something new. It was a low-grade fever, but still something to make me take notice. On the 6th, I started feeling like I had the flu. Body aches had taken over, the fever was dragging me to the ground, and the noise in my chest was still there. It wasn't until I woke up on the 7th and finally had a "productive" cough that made me really start getting concerned. I was coughing up blood. Not just *any* blood, but pinkish, and then brown blood. And the odor in my breath when I'd cough ... it was putrid, to put it mildly; like something had died in my lung. I called Pete at work to tell him what was going on, and when he came home from work, we immediately headed to the ER. (I had tried to get an appointment with my doctor, but that's another blog post/rant altogether.)

At the emergency room, I fully expected the standard chest x-ray, and I figured I'd be told I had pneumonia. I did NOT expect to have the doctor come in to tell me they needed to get a CT scan of my chest because they needed a better view. And I certainly did not expect to have yet another doctor come in and scare the life out of me with the words, "We found a mass in your lung."

In the weeks that followed, I spent way more time than I could ever imagine doing something I am not known to tolerate well--waiting. I waited for referrals for a pulmonologist. I waited to have tests run. I waited on results. I waited for more tests, then more results. Test after test, biopsy after biopsy, frustration after painful frustration, all inconclusive.

I did learn a few things during all of that frustration. I learned that my body does not handle Demerol very well; it causes my blood pressure and my heart rate to go dangerously high. I learned that I obviously have a pretty decent tolerance to anesthesia, because I don't do "twilight sleep" very well. In fact, I remember all but about five minutes of a 30-minute bronchoscopy, including having my nose filled with K-Y jelly so the tube would slide down my nose/throat easily. I also remember having my lung flooded with fluid (something called a "lavage"?) and my brain sending out warning sirens but not being able to do anything but lay there. Not fun.

I also learned that being awake for a needle biopsy of your lung is NOT "just slightly uncomfortable". It is nearly half an hour of feeling like you're being skewered onto the table, all while laying face-down and having your mouth fill with blood that you can't spit out unless you plan on laying IN IT until the test is over. Just FYI, it's rather difficult to "take a breath and hold it" while there is a needle stuck in your chest.

The third test wasn't all bad. It was yet another bronchoscopy, but this time I was fully asleep. Nice. I do recommend that. There was some pain in the days that followed, but nothing really bad. If you have to have a bronchoscopy done to biopsy a mysterious mass in your lung that isn't malignant and nobody seems to be able to get a good handle on, a super-dimension bronchoscopy is the way to go!

Problem with all of this was that I *still* didn't get a diagnosis, even after three biopsies. The only thing left was the BIGGIE, and on the 13th of March, just two days after our son came home from Afghanistan, I was admitted to have a video-assisted thoracoscopy done. My pulmonologist couldn't get to the mass, and the thoracic surgeon didn't want to mess around with yet another "test"; they decided to just go big and take the mass out, THEN run tests on it. I don't remember, but apparently before the surgery I had some REALLY good drugs, because I'm told that when some of our friends came back to pray for me, my response to "how are you?" was, "Happy, happy, happy!"

That didn't last long, unfortunately.

When I woke up from that beast of a surgery, I was in more pain than I have ever been, in all of my life. The chest tube in my side felt like I was expanding my lung against a knife blade with every single breath. I couldn't take but tiny little breaths, and when they got me up to "do my laps" around the hospital ward, I felt like I was going to die, right then and there. I couldn't get air IN my lung, it hurt to move, it hurt to lay still, it hurt to adjust myself ... it just HURT. And before you accuse me of being a weenie, bear in mind I've been through childbirth seven times; only one c-section; I've had a kidney stone; I've had a complete rotator cuff repair, including three months of excruciating physical therapy ... and this lung surgery was THE WORST pain I have ever felt. Getting that chest tube out two days post-op was a huge (and immediate) relief, but the doctors and nurses were right when they told me that this recovery is a tough one. I am a month out from surgery now, and I'm still feeling the effects. I have some nerve issues, sort of a pinched nerve across my midsection from the ping-pong-ball-sized mass being pulled through my ribs. It's still hard to lay on my side, and because the doctor did a wedge resection, meaning he took a wedge of lung tissue out to be sure he got the entire mass, I'm having to train my lung to compensate for the loss of that tissue.

So, you're wondering why I'm sharing this? To scare someone senseless? Nope. Actually, I'm sharing it because during the course of this nightmare, I found very little in terms of personal experience with what was "theorized" to be the cause of the weird crackling sound, bloody cough, fever, body aches, and drenching night sweats that I thought were attributed to the fever. As my pulmonologist suspected once the preliminary biopsies showed no malignancies, I have a fungal lung infection called histoplasmosis. I probably got it last Spring (hey, I said the "crackling" in my lung had happened before) when I tilled up a pretty large section of my backyard to do some gardening. Seems this lovely little "bug" is inhaled, completely common for the area of the country we live in, and can come from soil, rotten wood, bat guano, and bird poop. Nice, huh?

I wanted to share my medical mystery just so someone like me, with a "hinting" at a possible diagnosis of a lung fungus, can find at least one other human being somewhere in cyberspace who has been through this. I did find two other personal stories from people diagnosed with this, but both had other major lung issues beforehand--one had COPD, the other had sarcoidosis. I am relatively healthy other than having a fungal mass attack my lung. The weird putrid smell/taste that I had with the bloody cough? It *WAS* dead tissue. Necrosis. The infection was actually killing off my lung! There was also some fibrosis found during the first bronchoscopy, which scared my doctor because fibrosis with no obvious cause is a VERY bad diagnosis to have. Worse than the "C" word, I have found. Overall, finding out I have something as "simple" as histoplasmosis was somewhat of a relief. It's nice to know, after all I've gone through just to get a diagnosis, that the cure is as simple as taking an antifungal for several months.

I do wish that it hadn't taken 12 weeks to get a diagnosis, though. Dr. House always manages to cure his patients in an hour! Sigh ...
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