If you’ve been following/keeping up with me on Twitter or Facebook (which of course, if we’re connected because we know each other in real life, the answer is probably “not really”), you’ll know that I had a brief stint in the hospital about a week and a half ago, my discharge as a special present on Christmas Day. I will explain further, but in short, I was hospitalized for hypokalemia (low potassium) associated paralysis. Normally, although I’m on Twitter, Facebook, etc. and even keep this blog, I don’t really like getting into the finer details of my private life– especially the specific details of my medical history– but I’m sharing this here to educate others as well as point out how sharing some of those details in some lasting way (rather than just conversation– e.g., a hundred years ago, it would have been letters or a journal/diary) has helped me better explain and understand what has been going on. Through tweets/status updates, emails, text messages, etc., we each create a sort of digital archive of our individual lives and by reviewing the browser history of my life for the past six months, I’ve actually been able to construct a more accurate timeline, see how my symptoms first arose and progressed into partial paralysis, determine what additional factors may have been at play, and plan for better prevention as well as earlier detection.
About a month ago, I experienced very sore and easily fatigued legs as well as severe pain in my quads, hips and lower back, especially when trying to sit down or get back up (one of these lift chairs would have been amazingly helpful)– but the symptoms had gone away after a few days, so I attributed it to simply being tired/burnt out, stressed, and in need of some serious rest in the short term and some serious exercise and getting back into shape in the long term. Unfortunately, by the beginning of Christmas week– right after my office finally closed for the winter closure/break and I started a two-week vacation– my entire body was aching (on any of the commonly used pain scales, approximately 5/10 at best, 10/10 at worst), like it would the day after doing a hundred squat thrusts or lunges with weights in each hand (which of course I hadn’t done). I wasn’t able to do much for days (didn’t even sufficiently proofread my tweet!) and I simply sat or lay down with a heating pad, hoping that plus some rest would clear things up. But things only got worse: I could barely sit down or stand back up without being in excruciating pain (imagine how challenging going to the bathroom becomes at that point, especially for us women folk) and in addition to the pain, I started to experience not just simple fatigue, but actual muscle weakness. By Wednesday morning, I was having trouble getting out of bed (literally– not “I feel sad and don’t feel like getting out of bed,” but more like “I can’t get out of bed because I can’t actually move parts of my body and moving the parts I can causes intense pain) and getting dressed, the pain and weakness having spread by then to my arms and back. I had already contacted my primary care physician, trying to determine if this was more serious than just being tired, stressed and out of shape, and I was supposed to go in on Thursday afternoon to see her, but by late Wednesday night, partial paralysis had already set in.
Nature’s call woke me up at about 2 am on Wednesday (technically, Thursday) night; partial paralysis had set in and I found myself unable to get myself out of bed. I could barely move my arms and legs, much less push myself up and out of bed. I had left the heat set a little too high, so I not only had to go to the bathroom, but I was already starting to overheat. I couldn’t even move my legs enough to get out from under the covers, my legs becoming more entangled in the sheets with every pathetic kick, or move my arms enough to somehow pull the covers back. Panic started to set in as I struggled more and more, my now tangled legs adding to the feeling of being trapped, my normally featherweight duvet feeling like a weighted net holding me down, and each miserable movement only making it warmer and more agonizing in the trap that my bed had become. For those of you who know me relatively well, you know I’m no stranger to pain or nausea or illness in general: I have regularly suffered through days, weeks, maybe even months of constant headache/migraine pain, nausea and vomiting. I have woken up in the middle of an endoscopy to see the inside of my own stomach on the screen, had multiple bad drug interactions, from painful dystonic reactions to full-blown pancreatitis and liver inflammation, and found myself crawling to the kitchen because my back hurt so much. But I have never experienced such severe muscle weakness or paralysis of any kind and that feeling of such sudden helplessness is one of the scariest things I have ever experienced. I remembered a college classmate of mine who became paralyzed after contracting the Epstein-Barr virus— very athletic, he was a healthy high school student whose legs suddenly gave out from under him and hours later, they were paralyzed. I didn’t think it was nearly that bad, but I couldn’t help but remember his story.
I tried to calm down and assess the situation. I’ve been through enough neurological exams to do a few tests on my own and found that I could at least wiggle my fingers and toes, weakly twitch muscles over most of my body, and still feel things along my skin, so I knew I wasn’t completely paralyzed and just tried to focus on what to do. I struggled for nearly half an hour, trying to get out of bed enough to call 911 (and for some reason, the 911 operator kind of gave me a hard time because my cell phone number and location weren’t showing up correctly, but I digress…). Once the paramedics/ambulance were on their way, somehow, I managed to get some pants on (forget about any vanity– couldn’t lift my arms even to shoulder height, much less hold them up, so bed head ponytail and glasses had to do) and amazingly, once I was standing, I could actually walk, albeit awkwardly and stilted like a zombie (“traditional” zombie pace, not superfast like the crazed zombies of recent cinematic fame). I unlocked my apartment door (thank God for front door buzzers) and leaned against the wall, waiting for help. Once they got to my apartment, the paramedics wanted to sit me back down again to check me out while waiting for the actual ambulance, but I told them, “If I sit down, I won’t be able to get back up.” This wouldn’t normally be a big deal, but they hadn’t brought up a gurney/stretcher since it’s difficult (but not impossible) to fit one in my building’s elevator (not sure why I’ve never seen paramedics/EMTs out here use one of those stretchers that folds up more like a wheelchair, with the patient strapped in– the paramedics used that years ago with my father to navigate slightly narrow stairs at our old house). However, since I could still kind of walk, I just said “forget it, let’s just try walking” and we made our way down the hall to the elevator. Unfortunately, if you’re parked near the front door rather than the garage entrance, there are still two half flights of stairs before you’re on precious parking lot, car-level land. Gritting through the pain and holding on to one of the paramedics for support, I went down first the hard, indoor, linoleum covered stairs, then the even harder concrete stairs outside, feeling like I could go down head first at any second (and having done it as a child, going head first into concrete is not cool). Once they got me settled outside, they started checking me out while they wheeled out the gurney and one of the paramedics or EMTs asked why I was sweating so much. Another paramedic pointed out that I had said I had been pushing hard for the past half hour just to call 911 and unlock my door, not to mention just getting downstairs, which was good because I really was about to lose it from a combination of fear, panic, and pain.
Luckily, I live literally around the corner from the hospital, so getting there was quick, but I didn’t feel like folks were really taking me seriously until after the ER doctor saw me and then definitely once my blood tests came back, despite almost collapsing when they were moving me from the gurney to a wheelchair and all the help required me to get me into a hospital gown and onto the bed/stretcher in my room in the ER. It kind of felt like because I couldn’t name some recent injury or some underlying condition and because I was able to move a bit, they thought I was maybe not faking, but exaggerating things a bit. But when the ER doctor came in, she immediately asked if I knew how my potassium levels were, which of course I didn’t (it’s not like taking your temperature– checking your potassium level actually requires a blood test). My primary ER nurse was very nice, patiently holding my cup so I could drink some soda to help settle my stomach (I was nauseated, of course, as usual) and urging me not to push myself, to let her help me, even if it’s as boring as holding my cup so I could drink something (I was also pretty dehydrated by this point). Those of you who know me know that I like to be pretty independent, often to a fault, so you could imagine how hard even something as simple as that would be for me, but eventually, I was in so much pain and so exhausted that I just gave up and decided to lay there, stop worrying, and let the doctors and nurses do their thing.
In the real world– not the CSI, Law & Order, ER world– labs take a while, but after 1-2 hours (who’s counting at this point?), my tests came back and sure enough my potassium level had plummeted to a dangerously low level– normal potassium levels are between 3.5 and 5.0 mEq/L, mild hypokalemia is considered 2.5-3 mEq/L, severe is less than 2 mEq/L. My potassium level was 1.9 mEq/L, at which point flaccid paralysis (muscle weakness, paralysis, loss in muscle tone) and hyporeflexia (reduced or absent reflexes) can present. Rhabdomyolysis can also occur, skeletal muscle damage releasing harmful proteins into the bloodstream, and even respiratory depression (muscle is muscle after all and it takes some muscle to keep breathing) as well as cardiac problems, such as irregular heartbeat (prompting the fastest EKG ever). I had all of those symptoms, except for respiratory or cardiac problems thankfully (although they did have me hooked up to some type of cardiac monitor the whole time I was in the hospital– if your hospital gown doesn’t have the little pocket for it, you literally carry this thing around with you all the time like an albatross around your neck).
Ultimately, I was eventually moved into an actual bed to make me more comfortable while waiting to be admitted and moved to a regular room, this time with enough manpower to move me more easily (albeit painfully), doing the ol’ 1-2-3 lift from stretcher to bed. I was eventually put in the Progressive Care Unit (one notch below ICU and filled with patients who have had heart attacks, strokes, etc.) and they pumped me full of IV potassium which, in itself, is rather painful to administer (fyi, potassium chloride is one of the drugs used in lethal injection cocktails) and is usually mixed with lidocaine not only in the IV bag, but in the IV site as well to numb the pain (and with my small veins, they had to turn down the flow rate too). Low potassium levels really screw with almost everything– I experienced my first auditory hallucinations that first night. The lidocaine injection set off this horrible, loud ringing in my ears and even though I knew it wasn’t real, that it was a hallucination, it was new to me and scary. It was a full day before I could fully move my arms and legs again and not until Friday could I actually get up, walk around, go to the bathroom by myself, etc. After physical therapy, occupational therapy (i.e., showing I can put pants on, use the bathroom, stand at the sink without help, etc.) and several visits to the can (never knew how rewarding it would be to be able to go to the bathroom by myself again), I was exhausted by mid-afternoon and hurting all over, but at least I could walk again, feed myself, hold my phone to my ear, text message briefly– you know, the important things.
So, what caused all this? About six months ago, one of my doctors put me on a diuretic/water pill (hydrochlorothiazide) to help control my blood pressure and in turn, better prevent migraines, which worked (good), but that particular water pill has the unfortunate “occasional” side effect of hypokalemia (bad). This, in combination with a possible underlying genetic condition called hypokalemic periodic paralysis, made my body continuously lose potassium, eventually dipping to this dangerously low level. As I said at the beginning of this post, after looking through tweets/status updates, emails, and text messages, etc., I realized that for at least several weeks, maybe even a few months before being hospitalized, I was having more pain than usual– aside from headaches/migraines, I was having more than normal back pain, some soreness and weakness in my legs, and a return of moderate to severe numbness and tingling in my wrists and hands (which I wrote off as symptoms of repetitive stress/carpal tunnel). I realized that I had been having hypokalemia symptoms for months, but in addition to simply attributing them to just being tired, stressed and in need of getting some rest and back into shape, I have been going through continuous bouts of pain and related issues for a few years now and no one has been able to pinpoint and fix the exact cause or really even theorize a new cause other than the usual: being tired, stressed and in need of both rest and exercise. I think I felt like if I had brought things up a month or two ago, I was going to be told the same thing, so I saved myself the effort, discouragement and co-pay. Unfortunately, this time, there really was something “new” wrong and both doctors and nurses told me repeatedly how lucky I was, that considering how low my potassium level was that it could have been much, much worse. Well, message received and I am certainly thankful that only after a little over a day, I was able to move and walk again and that I didn’t sustain any lasting muscle damage, especially to my heart. I’m thankful to everyone, from the paramedics and EMTs to the doctors and nurses who took care of me to my friend who left Christmas Day with his family to pick me up and take me home.
I continued to experience pretty bad pain and soreness from the hypokalemia and rhabdomyolysis– muscle doesn’t repair overnight– but once I was taken off of IV potassium and able to sustain a normal potassium level through diet alone, I was able to go home on Christmas Day. I’m still recovering– mostly dealing with receding muscle pain, trying to build back up muscle strength, resting and sleeping lots as I’m still easily exhausted, and finally, making sure that I get my potassium through a glass of orange juice or a banana every day.