This is the story of how I almost died. I mentioned earlier today how I was unexpectedly emotional about being alive today, and upon your urging, I finally took the time to write down my story. I'm warning you in advance—this is long and unedited. I'm throwing in some gifs to try to keep it interesting (which I assume nuKinja will put in all the wrong places). (Hey, it could be a game! MATCHING! Match the gif to whatever it seems like it might go with!) Good luck.
I've lived with chronic pain for over half of my life. When I started college, I'd been diagnosed with fibromyalgia (a chronic pain condition that affects most of the skeletal-muscular system) and rheumatoid arthritis (an autoimmune disease in which the immune system attacks the joints). To manage the RA, I was on an immunosuppressant drug called Humira that, as one might guess, suppressed my immune system to keep it from attacking my body. Any commercial for drugs like Humira or Embrel will tell you—these drugs may make you susceptible to infection, and when you're on an immunosuppressant, your body likely isn't going to be able to fight an infection that takes hold. For the fibromyalgia, I'd found the newly approved drug Lyrica in combination with Cymbalta greatly helped my symptoms, though every now and then, particularly in times of great stress, I'd get a flare up.
In 2009, I was 20, a transfer sophomore student to a great university, and generally happier than I'd been in years. Mid-March hit, and I started feeling less than stellar. From the beginning of the week, I was tired, achy, in pain…but that's nothing I wasn't used to. I shook it off as fibromyalgia flare-up and kept going. I thought so little of it that I didn't even call my parents, as I often had in the past. By this point, I knew what their recommendations would be, what meds to take, to get a lot of water and a lot of rest. And so I did.
The morning of March 21, I struggled particularly hard to get out of bed when my alarm went off. It was a Saturday, and I'd signed up to be a volunteer at my university's biggest event of the year. I managed to drag my achy body out of bed, into some jeans and a tank top, and trudge across campus to the designated volunteer area. As I sat in the lecture hall where the coordinators were explaining what we'd be doing, I could barely keep my eyes open. I paid just enough attention to hear that they had more volunteers than they needed, so if anyone wanted to leave to participate in the fun, they were more than welcome to. As soon as they were done speaking, I quickly stood up and got my bearings. I think around then one of my roommates asked me if I was okay—I looked kind of pale and out of it. I told her I was alright—just having a flare-up and feeling tired. I decided the walk back to my dorm was too far; my boyfriend's dorm was right across the street, so I headed there instead. I got to his room, climbed into his lofted bed, and fell asleep.
For the next twelve hours, I slept through everything—yelling, laughing, running in my boyfriend's suite, outside the dorm, everywhere on campus. There were thousands of students and thousands of alumni engaging in the rowdiest shindig of the year. Nothing roused me in the slightest.
Around 8 pm, my boyfriend was able to wake me. I told him how bad I was feeling. Everything hurts…Everything hurts so much. I'm just so tired… He suggested that maybe I needed to eat something and take my meds, and that sounded like a good idea. I tried to get out of his bed, to climb down the ladder side of the loft. My limbs felt so heavy, and I felt so weak… He braced me and helped me down to the floor to get my shoes on. Once they were on, though, I couldn't stand. So tired. So weak. It was then that he insisted I call my father.
I dialed my dad, told him I wasn't feeling well at all, but that it was just a bad flare-up. I needed more rest, I was about to go back to my room to get my meds, and I'd be fine. I guess it was his father's intuition that told him that something wasn't right, because he said he was coming to campus to check up on me, that he'd meet me at my dorm.
I had to get back to my dorm, but at that point, I was too weak to walk. My boyfriend and a friend helped carry me, step by step, across campus. By the time I got there, I was clammy and covered in sweat. I excused myself to the bathroom, where I let out the contents of very, very full bladder.
By the time I got out, my dad was there. He took a look at me and rushed me to the car, called my mom, and said he was taking me to the ER. My mom knew the owner of a local urgent care center from work, and she knew they'd be able to see me faster, so she directed him there. I don't remember much else from the car ride there.
When I walked into the urgent care center, I started to sit down in the waiting area. They took one look at me and rushed me back. I was in a bed with a blood pressure cuff around my arm in under a minute. My BP was 33/20. Another 30 minutes, they told my parents, and I would've been dead.
They hooked me up to fluids (and maybe antibiotics—I can't recall specifically), and then we waited. I wasn't quite sure for what. I guess I thought we were waiting to see if the fluids helped, if they brought my blood pressure up. I now know they were waiting for an ICU bed to open up. They knew I was in septic shock, and I needed help fast.
By the time I got to the ICU (after an interesting ambulance ride in which I got to hold my own saline bag up, as they lacked the proper equipment *grumble grumble*), they determined I was in septic shock with full-blown septicemia.. They didn't tell me any of this. I just answered the questions they asked—was I on any medications, did I drink, did I smoke, and so on. Maybe I was in such bad shape that telling me what was going on would've been a waste of time; maybe since my parents were there, the doctors figured they could relay the message. Whatever it was, I was oblivious. By now, it was in the wee hours of Sunday morning, and I was joking with my parents that I'd better be back on campus by Tuesday morning—I didn't want to miss cinnamon roll day in the servery.
The doctors quickly decided I needed a central venous catheter, aka a central line. I had no idea what it was, and they didn't take the time to tell me. They advised me of the risks (knicking the lung [a pneumothorax], which the doctor told me she'd never done, was the major one), had me sign a form—I remember the joking from my parents and staff that my handwriting looked like a kindergartener's—then pulled my hair out of the way, threw a blue sterilization drape over my neck and face, gave me a shot of anesthetic (I assume, since I don't recall it hurting), then inserted the catheter into my jugular vein and ran it to my heart.
Some time passed, and eventually the doctor rushed in, telling my parents she was concerned she might have knicked my lung. The tension in the room thickened as we waited for a portable chest x-ray to be brought in to check. I don't know how long it took—time goes by sort of strangely when you're that close to death and waiting to find out if air is leaking out of your lungs and into your chest—but eventually it came. The x-ray indicated that the doctor hadn't hit my lung. My tension dissipated; my parents', only slightly.
The doctors took my parents in and out of the room, giving them information as they got it, and the news wasn't good. By this point, on top of the septicemia and septic shock, I was in complete or near-complete renal failure and multi-system organ failure. I had no idea. They told me I could eat something, but it had to come from the "renal menu," so I knew something was going on with my kidneys. I lamented the options, ordered something—some bland sort of soup, I believe, that was very far from palatable. I begged for saltine crackers or something to choke it down with, but with no luck.
I remember being awake all night. I hadn't been given my sleeping pills, the only things that allowed me a night's rest. I didn't sleep at all that night, and as night turned into day, the good doctors continued fighting to keep me alive. They pumped me full of antibiotics, fluids, things my blood needed (iron, calcium, potassium, magnesium…), and when that wasn't enough, they gave me a partial blood transfusion. They hooked me up to oxygen, so I had a super oxygen mask. Through all of it, I kept my sense of humor. Hell, I have a picture of myself with a stuffed monkey on my head while I was getting a blood transfusion to prove it. I truly had no idea the gravity of my situation.
By Sunday night, I was getting tired. They still weren't giving me my sleeping pills. I called my best friend, a pre-med student, and told him what I knew, which wasn't much. I knew they'd given me a central line—he explained to me what it was. At that point, I was relieved they hadn't told me that they were sticking a catheter into my neck and pushing it to my heart. That freaked me out. I told him what they were pumping me with, and he explained what each did. He made me laugh and told me to keep him updated. After that, I listened to my dad's impossibly loud snoring from the couch in my room. Visiting hours had long since ended, but the nurses, knowing my condition, didn't dare try to kick my parents out.
Time becomes very fuzzy after that. I'm told it was around my second day in the ICU that I developed double septic pneumonia. My lungs were filling with fluid. I remember the machines constantly beeping with alert after alert, telling the doctors and nurses that my oxygen saturation levels were dropping. I still hadn't had a full night's sleep, and I began hallucinating, or at least perceiving things differently. I could swear I heard endless buzzing from the room next to mine, and I pounded the "call nurse" button, begging them with tears in my eyes to make it stop. I just wanted it all to stop, to rest… My parents tell me it was the beeping from my own machines, but I still recall hearing something else, which may or may not have actually been there.
The double septic pneumonia wasn't easy. My lungs were filled 95% full of fluid, and it wasn't going anywhere by itself. It was around that time that they told my parents I had roughly a 5% chance of making it, I think. (I'm not sure, exactly, because the doctors never told me any of it, never let me know the severity of my condition.) I believe it was my second night in the ICU that they hooked me up to bi-pap machine (bilevel positive airway pressure) at night, or as I called it, the Evil Face-Sucking Monster Beast from Hell (I have included a picture of said beast). This little machine pushed air into my lungs throughout the night to make sure I kept breathing. Had this not worked, I now know, they would have had to turn to more invasive methods. Even looking back on it now, I can say I might have preferred it. By this point I was on day three of very little real sleep, and now I had a machine pumping air into my lungs on top of my dad's snores keeping me awake. God, I remember my mouth being so dry that I convinced my dad to get me a cup of water and a straw, which I slipped under the mask…which led, of course, to a bunch of bubbles in the cup and the taste of disappointment and agony.The treatment for the pneumonia didn't end there, of course. Either every 4 or every 6 hours, I had to endure rather awful, sulfur-based breathing treatments that smelled…well, about what you'd expect vaporized sulfur-based crap to smell like. No one could bear to be in the room with me through that. As if that wasn't enough, each morning at 6 am or so, they came to do a chest x-ray. I always tried to stay upbeat with the staff (except for one nurse who I didn't like…I know now that she was just doing her job, but geeeeez, was she a hardass!). I kept my sense of humor throughout it all.
It was around day 3 in the ICU that I discovered the hospital hadn't been giving me by birth control. How did I discover this? In a bloody mess, of course. On top of that, I got my typical menstrual migraine, and I started becoming a hell of a lot grouchier. It was at this point that people from my mom's office started coming by, asking her how to do the job she had just left. I remember very distinctly lying in the bed in the ICU, bleeding, with a migraine, literally fighting off death, and some bitch is in my room asking my mom about how to do attendance or visitor's passes or some shit like that. I was NOT amused.
I know at some point I started sleeping, but I don't know when. I just know I felt constantly unbelievably tired. The first time my boyfriend came to visit, he sat by my bed and held my hand for a while. I tried to talk to him, but I drifted in and out of consciousness. Apparently that's why he only came to visit me one other time in the hospital—he figured I wouldn't be awake enough to know he was there. *shrug* What are ya gonna do? (My family took note of this, and they certainly counted it against him.)
There are things about the ICU you don't really think about unless you've spent time there. The most notable, I think, is the utter lack of privacy. They'd hooked me up to a catheter, so I didn't have to get up to pee, but if ever I wanted to take a crap, it was a public ordeal. I was supposed to page the nurse, who would disconnect all the necessary machines, walk me the two or three feet to the commode in the room, pull the curtain around me, and wait. …I did not enjoy being the center of such attention. Being the independent (and slightly anarchist) young lady I was, I quickly learned how to detach myself from the machines and get over to the toilet. You'd think all would be well; you would be mistaken. The ICU beds, you see, had weight sensors that would go off whenever I got up. Most of the nurses would come in, see the pulled curtain, and tell me to let them know when I was finished. I, of course, would get myself back in bed, reattach everything, then let them know. Not what they wanted, I know, but I counted these little things as small victories. (It was just the one hardass nurse who thoroughly scolded me each time I got out of the bed, waited by the curtain until I'd finished my business, then physically put me back in my bed.)
Another miserable thing about the ICU? No showers. No bathing. I didn't even get an offer from a hot nurse for a sponge bath! I don't know if you know this, but being on your deathbed can get kind of STANKY. 5 days in the same bed, fighting for your life, no showers, period mess… MISERY, I TELL YOU. My hair was disgusting. The only thing that made it bearable was that each day, my mom would French braid it for me. It got it out of the way, away from all lines going into me, from the masks It was one of those little things that perked me up, and to this day, when I'm not feeling well, I just want my mommy here to braid my hair for me.
As if my hospital stay wasn't miserable enough, the day I got admitted, the main water-line to the hospital had been pierced or something—I don't know, it involved gardening/groundskeeping, and the water was all contaminated. That, of course, meant no wonderful, wonderful hospital ice chips. (I'm a big ice person. Love ice. Eat ice. It was supposed to be ONE THING I could count on at the hospital! But no. No ice for Cas. Grrrr…)
Through all of this, I'd been seeing doctor after doctor… I can't even remember all the departments. Pulmonologist, nephrologist, infectious disease…ist, internist, pathologist, rheumatologist, admitting ER doc… All of these doctors, all with very clear ideas about what my treatment should consist of and be focused on, none of whom were talking to each other. After the first few days in the ICU, my dad started getting angry, and when he gets angry…everybody knows. He began demanding meetings with the higher-ups at the hospital and wouldn't quit his tirade until they managed to get all of the doctors involved in my care in one room at the same time. He wanted them to pick a doctor to "quarterback" my treatment, and eventually they managed to do just that.
It was around that time that things started turning around. We started seeing results from the treatments, and around day 3-4 or so, they even brought in a physical therapist to get me to walk a lap around the ward. I was more than ready for it, antsy to get out the hellish intensive care unit and into the general ward—a magical land where rooms had ACTUAL BATHROOMS with DOORS, behind which were SHOWERS. Around day five, I started asking at least 3 times a day if they would let me out of the ICU yet.
I think I spent a total of 5 days in the ICU, but I couldn't tell you for sure. I remember they told me around 6 in the morning when they came in for my daily chest x-ray that I'd be transferred to the general ward right after shift change. I couldn't contain my excitement! I called my mom, absolutely bubbling with joy, because, MOM, I CAN FINALLY TAKE A SHOWER. I HAVE NOT WASHED MY HAIR IN 10 DAYS. My mom, being the (understandably) protective parent (cough cough killjoy cough cough), though, made me swear I wouldn't take a shower until she got there, as she wanted to be right on the other side of the door if something happened. Eventually she arrived, and I was all excited for my shower…only to be told I had to wait until they disconnected my central line, covered it with plastic, and taped it down… After literal hours of anticipation, I finally got to that blessed bathroom and turned on the water…which was ice cold. I know I waited at least 5 minutes for the water to warm up, with my mom asking if I was okay every two minutes ("I haven't even gotten in the shower yet—it's too freaking cold!"). My anticipation got the best of me, though, as one might expect, and I ended up taking a cool-to-lukewarm shower, shampooing my hair at least three times and scrubbing myself as best I could.
My memories of being in the general ward are so much brighter. The exhaustion had finally lifted, and I no longer felt quite so weak. My breathing was still labored, and I still had the nasal cannula pumping me with oxygen, but I was getting better. A couple of friends came to see me, including my boyfriend, and there was laughter and joking. I had my laptop, so I caught up on all the TV shows I'd been meaning to watch. I still had to have breathing treatments, and they gave me a little thingy I had to practice breathing with to exercise my lungs, but within a day of being transferred to the general ward, I was already asking when they were gonna let me out.
On my ninth day in the hospital, I made up my mind—I was getting out that day. I got up that morning, showered, washed my hair and had my mom braid it, changed out of my hospital gown into a t-shirt (with a bra, no less!) and…possibly jeans/probably pajama pants, put on my makeup, and waited. Each time a doctor entered, I gave the same greeting—"So I'm going home today, right?!" My plan must have worked, because around 6 that evening, they discharged me.
First thing I did when I got home? Mmmm, enjoyed a nice, long bubble bath, then asked my mom if she'd be taking me back to campus in the morning. She wanted me to stay home a little while longer, but I convinced her that since the doctors said I was okay, I'd be fine. I just had to do what they said—take it easy. Go slowly. And that I did. The next day I was back in class.
If you've gotten this far, you're probably still wondering what the hell happened that put me in the hospital to begin with. What kind of infection was it? According to my infectious disease doctor, as best she could tell, it was, and I quote, "I-don't-know-itis." Another doctor said he wasn't sure—he'd expected to find that out on the autopsy table. As best we can figure, though, through time, hindsight, and medical charts, it very well may have started with a urinary tract infection.* With my body unable to put up much of a defense, the infection was all, "THIS IS GONNA BE FUN!" It probably turned into a kidney infection, hitting both kidneys, which...then led to septicemia? (I don't understand all of it. I could call my now-almost-doctor bestie and have him explain it to me, but he probably has better things to do on a Sunday night, like save lives.)
Today, I'm physically great. From what all my specialists have told me, there looks to be no permanent damage from the whole ordeal. I was supposed to go back on immunosuppressants after my body had taken some time to heal, but I never did—the terror was too much. Somehow, though, the rheumatoid arthritis seems to have gone dormant. It may have been a case of juvenile rheumatoid arthritis that lasted a bit longer than most cases; it's extremely probable that the RA will come back someday. Until then, I'm living with a normal immune system. I've got my fibromyalgia under control with a wonderful medication that is just right for me, and these days, I'm happy.
There's so much more I could say about all of this, and none of this even begins to touch on what came after. No one warned me about what life would be like coming out alive after all this. While I'm physically and mentally good today, there was an extended period of time when that was not the case. The psychological effects of all of this…well, I'll save that for another post. (Or for anyone who wants to know a bit more, feel free to ask in the comments.)
Questions, comments? I'm more than happy to answer any and all. And if you read all of this, WOW.
*A UTI, you say? You'd think a sexually active, college-aged woman would know the symptoms of that, pick up on it, and know something is wrong! You'd think she would know that there are things you can do to avoid them, like peeing after sex! All of that, however, assumes that one receives a proper sex education, not the abstinence-only crap I got. My school gave us a week of sex ed each year in middle school that consisted of your typical STD-slideshow, lies about condoms and HIV, and analogies to pieces of gum or torn paper hearts. (NO ONE WANTS A PIECE OF GUM THAT'S BEEN CHEWED BEFORE.) Had I been taught properly about sex, and more specifically, about the female body, I would have known how to prevent such an infection and what symptoms to be on the lookout for. I'm not saying that abstinence-only education almost killed me…but abstinence-only education almost killed me.