The tale I’m about to tell is, I hope, the last of it’s kind in the Saga of the Lung, a ten-year battle with a mischievous alveolus. It is the finale of my trick lung giving it’s last hurrah (fingers crossed) and taking me on a wild ride as it goes down.
Little bit of a caveat before we proceed: Some of what I am about to recount isn’t pretty and might include some triggers for individuals who have gone through similar situations. The photos are raw and real, and there will be no attempt to try and make it all sound anything but what it was, which happens to be ridiculously heinous at times.
But it’s real, it’s a part of my story, and I must tell it. The tales never told all still exist, they simply remain unread.
Friday the 16th I awake at 4-freaking AM to very sharp, familiar pain in my right lung. After three major collapses and dozens of smaller ones, I know it’s down. The next step is always my least favorite, where I go about my day hoping it will resolve but not really knowing which direction it’s headed. By the evening I know it’s time to go, and Mike drives me to urgent care.
Long story short- doc takes an xray, says he sees a collapse and sends me to the ER to get a CT scan.
Keep in mind here, CT scans are even clearer than x-rays.
I lie down to get shot- up with iodine and tell the dude with the needle, hey, I know my left arm looks like it’s got great veins, but just to warn you, it’s a pain in the ass and the vein always rolls.
The man doesn’t believe me. He pokes and pokes and finally moves to my other arm.
Man with needles: “Wow, I didn’t believe you. I have never seen such a fatty vein go so rogue.”
Sigh. Why don’t they ever believe you in there?
Now the needle is finally in, but suddenly I feel something warm running down my arm and glance over. This is a mistake. There is literally blood covering my entire arm and squirting out.
Apparently, the nifty little gadget that connects the needle to the thing that injects the iodine is a dud and has swiftly become a quick drainage system. The guy is reaching for towels and I am thinking how fortunate I am to be lying down because blood makes me woozy and, oh my, that is a lot of blood.
Man with needles, now covered in my blood: “What the heck, I have NEVER seen that happen. You’re one of those people, aren’t you? You’re in that one percent of people where the unlikely thing always happens?”
Me “Yes, I am a pain-in-the-ass anomaly.”
Finally it’s all squared away, they get the iodine in and take the scan. My lung is in excruciating pain at this point and I am trying to focus all my energy on breathing while we wait.
The next part of the story is where it gets….weird. A doctor tells me all is well, it’s not down and that there is some kind of mass on one lung I should look into.
I know something is amiss. As we walk out I turn to Mike and tell him with dead certainty, “This is a mistake…mark my words, we’ll be back here within days. My lung is down. I don’t know how thats possible, but it is”
The next few days my stubborn streak comes out to play, and I push through and ignore the pain. I am confused and bothered by it all because my body has never lied to me before, yet I see no other choice but to push through since they told me it’s ok.
Sunday morning Mike and I drive to Irvine for breast cancer 5k I’ve been looking forward to running for my mom. Running hurts more than I want to admit and I end up walking part of it. I tell myself to stop being a baby, and that nothing is wrong.
By monday morning my lung is angry. Very angry. I am afraid to look her in the eye. As a final shot in the dark, I email the one doctor I trust and ask him if he would just take a look at my CT scan. (He is the rheumatologist who sees me regularly for lupus treatment.) I really don’t know what I expect, but I go with my instincts.
I get an urgent email response from him while at work that afternoon. My lung is collapsed and I need to go back. Apparently, it was a bad read on the CT scan.
*Internal, silent swearing of all swear words.*
*External blank stare.*
I want to think they were going to call me about this little mishap, but I’m not sure. I am grateful for my rheumatologist and that my instincts are still sharp.
I go home, grab my hospital bag and kiss B goodbye, hoping to be back in a day or two. I get admitted to the hospital that night where I am monitored and treated for pain with a nice cocktail of dilauded and benadryl.
Since this is now my third major collapse recorded by their hospital, they decide it’s time for The Surgery.
In case you were wondering, The Surgery is where they go in through two major incisions on your chest and side, fully deflate your lung, cram a chest tube the width of a quarter up through your ribcage and into your chest/lung, purposefully damage the internal chest wall to create scar tissue, than glue/staple it all back up and send you on your merry way.
Sounds fun, huh?
The goal of all this is, of course, to keep it from collapsing again. They call it a VATS pleurodesis. I call it hell.
Tuesday morning my surgeon, Dr Davidson, comes in to introduce himself. He’s wearing jeans with a sports blazer and a pair of black converse. Mike says he looks like the warden from Shawshank Redemption. He shakes my hand and I can tell he doesn’t remember me, but we met before when he removed my last chest tube in June. I am pretty impressed with myself at this point for remembering more than a surgeon does while being on massive amount of drugs.
And….thats about all I remember from Tuesday. 🙂
Wednesday is surgery day. They wake me up at the crack of dawn and take me down to pre-op where I meet my anesthesiologist, Eddie. Eddie has a ponytail I can see peeking out from his surgical cap and he makes a lot of jokes. I would laugh, but I have a caffeine headache and all I can think about is coffee. Eddie is the first person who listens when I tell him Versed (the drug thats supposed to make you not care whats happening) has historically never worked for me, and he even explains why. Apparently, for a small percentage of people it has the the antithetical affect, sharpening the senses rather than dulling them. No shit. Suddenly I understand why the past few chest tube procedures have been so torturous.
Instead he gives me Fentanyl, which simply makes me feel like I had one too many drinks. It works beautifully, because as they wheel me into surgery where all the knives and needles and bright lights are, I find I don’t care- which is exactly what I wanted. I don’t even have a memory of them putting me under. The last thing I can recall is the song Kryptonite by Three Doors Down playing loudly, and one of nurses asking if I mind the music.
I don’t care, I don’t care about anything right now. I imagine I likely fall asleep with a ridiculous grin across my face.
I wake up feeling woozy with the surgeon’s hand on my shoulder and three nurses looking down at me. I am told later that I had a hard time waking up out of the anesthesia, and people were getting a bit concerned. Instead of it taking me 30 minutes to come to after surgery, it took me three hours. Surprise, surprise, you put me in my happy place, what do you expect?
After a few minutes of being awake, I notice a hose sticking out of my side. I stare at it, grateful that I didn’t have to feel it going in. The surgeon also tells me he had to remove about three inches from the top of my lung due to on-going damage. Didn’t see that coming. I feel a strange sadness at having lost a part of my body, even if it was nothing but trouble.
The rest of the day is very hazy and wonky, and I don’t remember much. My sweet sis comes to see me despite her aversion to hospitals, and at some point Suj and Justin bring me soup from Panera. I have good friends.
I should mention at this point, the goodness of the dude I married. This whole time he has been with me, holding my hand, rarely leaving my side. He knows how much I hate this, and he does what a best friend does best- he hates it too.
He brings me a stuffed frog who, for someone reason, I name Cricket. When Mike goes home for the night, Cricket is my reminder that he isn’t far.
It is now Thursday. I honesty recall very few details about today, except that I am woken up every few hours for a blood draw or intravenous drugs for the pain, which has increased to an intolerable point without them. I remember moments of watching the clock, waiting for the three hour mark when the nurse would come in to give me relief from the pain. I watch a lot of Friends and Modern Family and feel drugged most of the time. I miss Mr B and I miss feeling normal.
At some point my blood pressure and heart drops to a concerning low, and I am being monitored fairly closely for that. I try to tell them it is normally low, but perhaps it just comes out as gibberish. I notice that I have four IV’s at some point, two in each arm and two on each wrist and don’t remember how they got there.
Friday I am told I might be able to go home. I am ecstatic and do a little ‘dance’ sitting up in my hospital bed. I don’t know if I actually move, but in my head I am dancing.
They pull the hose out of my side (ouch) and stitch it up, making me feel sort of bad-ass but also kind of like Sally from the Nightmare before Christmas with all my scars and stitches. I don’t get to go home today after-all, so I order a pizza and take pictures from my window, dreaming of tomorrow’s release.
It’s Saturday, freedom at last. They discharge me from the hospital and I say goodbye to all the remarkable nurses who have been with me and are cheering me on. I apparently leave a thank you note for the surgeon, though I don’t recall writing it.
I am greeted by Mr B at the door, and we are both tickled to see each other. He notices right away something is different and is overly gentle, offering his body for me to lean on as I walk, never leaving my side.
I wish I could tell you that the next few days are wonderful and healing. They aren’t. To be completely honest, I experience some of the darkest days after I arrive home. I am not entirely sure why it is as hard as it is, but I have a few theories. First, the pain is pretty horrific. Being off the strong stuff they had me on in the hospital and putting me on Tylonel with codeine just isn’t cutting it. Secondly, I am not prepared for the amount of weakness and limitation this has caused. With a good part of my lung removed and the rest roughed up and stapled and glued, I cannot walk across the room without getting considerably winded, and suddenly I feel as if I no longer know myself. I long to run again and fear that will never again happen. I have lost about ten pounds I didn’t have to give and I feel powerless and fragile, a state I disdain in myself. And there is nothing I can do. The scars are bigger than I imagined they would be, and as I examine all of them, I count six from the past 10 years with three new ones. Something inside my spirit breaks.
I do come out of that dark place about 3 days later, and I am stronger. I am very aware that people are praying for me and that He is close. Every day I can breath a bit easier, and I am learning to manage the pain. I am off all the drugs they gave me and feel myself again….mostly. From what I understand, the pain is likely never going to go away completely, but it’s definitely bearable.
Would I do it again? Heck, I don’t know. All I know is that my right lung has gone from 99% probability of recurrent collapse to 5%. If this saves me from another dozen chest tubes, I’ll take it. I start a stronger Lupus treatment in three weeks, which I’m nervous about but hopeful will help regain my health.
And I learned something new through this ordeal, a lesson I probably would not have chosen to undertake had I been given a choice. I am not loved for my strength or ability or function. I am loved at my worst when I have nothing to give and when I feel worthless. Love is among us in the crowd if you pay attention, in the eyes of a nurse, the hand of a stranger, the kindness of a friend. And when I asked where He was through it all, He showed me their faces.