Surreal. That is the only word I can find to explain the things that have occurred over the past few days. It feels like a long expanse of time from my life is missing, however, it’s that missing expanse that I find myself living in my head over and over again. The hope is, if I get it out here . . . I can get it out of my head.
For the previous week and a half, I’d been extremely tired and not feeling well, missed a lot of work and slept way too much. Constantly being grated on about my nutritional choices didn’t help, and frustration was setting in hardcore. After over a week off work, on Monday I finally had regained enough strength to return to work after seeing my doctors on Friday morning, who, instead of repeating the same old phrases of iron-rich foods, respectively a) said she would arrange for an ultrasound and b) started me on Provera to deal with my messed up periods which are the real root of the anemia issues. We’d try that course of action for the next three weeks, and re-evaluate. I got blood drawn like I have many times, and returned home.
Monday morning (May 6th), things had continued to go on the uphill and despite a crappy night of breathing and four hours of sleep, I went to work feeling okay. I was exhausted, but I was happy to be there and went through the motions like any morning, albeit with less enthusiasm. I came to school, and while I was hanging out in the accessibility office, I read the heartbeat skipping text conversion of a message from my doctor’s assistant: “I need you to call me as soon as you can.” I slipped out of the office and down the hall, where I was told “You need to go to the emergency room right away and tell them your hemoglobin is 56–you may need a blood transfusion.” My response was to ask if I could go to class, considering I’d gone to work that morning, and after checking with the doctor, I was okayed to go to class prior to going to the ER.
I calmly returned to the accessibility office and BBMed my boss, then once my paperwork in there was done I went to my mom’s office to let her know what was going on, e-mailed my friend Steve and BBMed my friend Dia. While I went to class, my mom went back home and packed my stuff up, picked me back up at school and we went to the hospital.
I was triaged (and got a mask to wear, because I was so uninterested in getting germy sick in that ER), and the 2.5 hour wait began. I was called in, re-assessed, and stuck twice before an IV was accessed (that shit hurts. I was biting the inside of my mouth–I really thought it was not going to be a big deal but . . . wow). Blood was drawn from my other arm, and IV fluids were started. I saw the awesome Doctor Tim who complimented me on my Chucks and commented on the fact that my iPod, video camera and phone were all siting on my bed, and waited for blood to arrive–over the weekend, my hemoglobin had dropped further, to 52, while it should be over 120 . . . so while I was feeling fine, I was in pretty bad shape. My heart rate upon my first check once in my little ER room was 137–in most of my fitness labs last term, my resting heart rate was in the 70s.
Not impressed with this situation.
Eventually the nurse said that the blood should be arriving in about 20 minutes. Finally, they hooked me up, we waited the initial 15 minutes to ensure I wasn’t having any sort of reaction to it, and then my mom left for the night. Because my blood counts were so messed up, I was sick, but I was feeling totally fine and was constantly using my phone, iPod or iPad to keep myself entertained, and video blogging the hospital stay as it progressed (near the end of this post). By about 9 PM I had given up on the idea that any sort of sleep might happen between the frequent vitals checks and the old lady yelling in the room across from me. I plugged my earphones in and watched the Dear Jack documentary once again as fresh, packed red blood cells united with the ones already in my body.
Not impressed with this situation, but even after the saline alone, my nurse commented that my colour was already better.
Sometime during the first transfusion, around 11:30, I heard the nurses doing a shift change and talking about me (I was “19” due to where I was located). Soon enough, someone crashed through my door with another bed and I got transferred out of the main ER by a couple hospital people who chose to crash through my doorway with a bed–I was just like “Just leave it there, I can walk!”. After feeling like I was in some kind of movie as they not-so-gracefully careened my bed to the back portion of the ER, I found myself in a much better room in a quieter back area, still my own room with my own bathroom, which I was happy about.
Eventually, the last bit of the blood was run through with more saline, and sometime soon after I was given a shot of Lasix through the IV, left on the saline for awhile, and told to rest. Hahaha, funny joke nurses! Reality: there is no rest on Lasix (a diuretic), and when the nurses say “This will make you pee” is the understatement of the year. Within about five minutes of the first dose, I was, I swear, going to the bathroom every five or ten minutes (I was like “REALLY what is the point of giving me IV fluids if you are simultaneously just making me pee it all out?!”). I think my nurse was actually slightly amused. Eventually the nurses came in again and started the second bag of blood (which is this big important production involving turning the bright light on because one of them has to stand there holding my arm and reading all of the information off of my bracelet to the other nurse reading the matching information off of the bag of blood).
Throughout much of the time I spent in these hospital beds, I played the same three things on my iPod:
- Caves – Jack’s Mannequin [for about eight hours straight]:
- “No peace / just clicking machines […] the walls caved in on me.”
- “I lay still, still I’m ready to fight”
- “The walls are caving in / Doors got locked for sure / There’s no one here but me . . .”
- “I fought a war to walk a gangplank / into a life I left behind / windows leading to the past / think it’s time I broke some glass / Get this history off my mind.”
- But really, it is all about the piano–you’ll know the part I’m talking about.
- Diane the Skyscraper – Jack’s Mannequin:
- “But I don’t have the energy / So she plugs my machines back in . . .”
- “And the late night TV talks to me, bout God, but God why can’t I sleep / As she plugs my machines back in.”
- “I’d be lying if I said this was my plan / but we are all in this together / See I’m trying but I just don’t understand / Why I can’t predict the weather past the storm.”
- “And I feel like I’m a battle tank / But there’s peace for every pound of strength.”
- and the Matthew Good album Hospital Music.
Sometime around 2 AM the night shift ER doctor came and talked to me, and was a total sweetheart. She told me she was going to refer me to hematology (outpatients) to do testing to rule out a bleeding disorder (like Von Willebrands), and sat down on my bed and told me about how she has two kids with hemophilia. Really, if a doctor is going to come visit at 2 AM, it helps if they are personable–though I only saw her for a few minutes, she was fantastic.
Between the vitals every half hour and the next shot of Lasix (I tried to argue with them on it–“I don’t want that again. You told me to rest and I just ended up going to the bathroom every five minutes, how is that even productive?”), sleep was non-existent. Even more-so when at 4 AM old-man-next-door was yelling about his rain gauge and getting angry with the nurses. Somewhere after 4:45 AM, the nurse came in to do vitals and took the SAT probe away from me because apparently she didn’t like me playing with it. Also sometime around here I also caused an “upstream occlusion” in my IV by getting tangled in the power cord (serves them right for giving me the Lasix :]).
The early hours of the morning . . . 4:19 / 4:45 AM
The third and final bag of blood was started sometime in the early morning hours, and when it was finished I actually got unhooked from my IV for a bit–pretty soon after this, my morning nurse, Spencer, came to give me another shot of Lasix, and I told him “My arms are free now, let’s have a dance party instead of the Lasix, okay?” (He didn’t oblige, by the way, and I swear they have a script because he was just like “This will make you pee”, and I was like “Understatement of the year, my friend.” The first dose was the worst, but I still was going to the bathroom like every twenty minutes on the subsequent doses, which was still ridiculous but not as ridiculous. Granted, I was just happy not to be stuck to the pole anymore, because that thing had shitty wheels and made everything so much more confusing.
I actually don’t hate this picture, because I actually look fairly healthy in it. Also i was happy because I was untethered.
I thought once I’d gotten unhooked and shot up with Lasix one final time that I was free. I honestly did. My last heart rate that I’d asked about was 94 and I was like “Oh good, look, time to go home.” The lab came and drew blood . . . and then Spencer re-appeared and hooked me back up again! Needless to say, I wasn’t impressed.
Soon enough another doctor came in to tell me my hemoglobin was up to 113, that I just needed to ensure I kept my appointment with my gynaecologist on May 22nd and keep taking my iron pills, and I could go home. Spencer came back and unhooked me from the saline and pulled my IV and I was free to go.
While my hospitalization wasn’t in the least torturous, and full of really good people taking care of me, it should have never had to happen to begin with. I’ve been expressing concerns to my family doctor for a year and continually requesting regular hemoglobin draws, and those values have been having ups and downs, even when I was compliant with treatment. The purpose of having a doctor is so they assist you to make the right decisions about how to deal with what is going on in your body . . . not simply facilitate the making of requests. The big issue finally came, obviously, within the last couple weeks, when between April 12th and May 3rd my hemoglobin dropped from 8.3 (up from 6.something) to 5.8. It should have never had the chance considering I was seeing my doctor almost monthly to get to the point where I could barely get out of bed for five days, and it should not have taken a week to see my doctors after the fact–I am still angry about that. If you know me, you will know that I am all about self-advocacy, but the reality is, in order to put up a fight . . . it is imperative to be moderately healthy–you have to have the energy to fight. Denial is a typical and important yet also potentially detrimental coping mechanism, and I’ve experienced that deeply in this experience–I am okay, it’s not that bad. I spent an entire weekend telling my mom that I didn’t need to go to the hospital when I couldn’t even get out of bed without my head hurting. Denial is easier than feeling all kinds of the crazy things it’s possible to feel when you’re sick . . . because it’s less emotionally draining when your body and mind are already exhausted.
There came a point, which I didn’t realize until I got home from the hospital, where I simply went on emotional autopilot simply just to keep surviving, and really, it felt a lot better when I started feeling things properly again. And I think that came with the return to energy, too. Because for way too long, I’ve been coasting. I’ve been trying to survive and my body wasn’t healthy–yet, I was trying but without the right tools. Which is futile. Regrets are futile, also, however–I’ve learned that if this ever, God forbid, happens again that I’ll go to the hospital when things start getting bad and not lose a week over my life . . . 22 hours was quite enough, but I’m back to where I should be . . . and working at getting better everyday.
I was blessed this week by the words and support of dozens upon dozens of my friends both near and far, and I am so thankful for these people–sharing their stories, and sending me e-mails, texts, tweets and Facebook messages continuously in the hours during and following my time in the hospital. Those things made the length of the days and nights both at home and in the ER more tolerable. That support means everything, and to everyone who reached out at all hours, I am beyond grateful for your support.
But more than that, I was for the second time in my life blessed by the gifts of people who I will never be able to thank, for helping to make me healthy by choosing to donate blood. I received a transfusion early in my life as a premie, and donated blood once in high school–I very much hope that I can stay healthy enough to be able to donate blood again soon. The irony is, I had a blood donation appointment booked for May 2nd that I couldn’t attend, and days later I was on the receiving end. To all of you who donate blood regularly: thank you. I cannot convey my thankfulness enough, nor can I express to you the awe I feel in the fact that I feel so healthy now. Thank you.
There are additional points of irony in this story. Monday when I was at work (fully believing I was perfectly healthy) my boss told me I looked like I’d lost weight (which I figured was just one of those things people tell you when you’ve been sick a week and thought nothing of it). I walked out of work and tweeted this Jack’s Mannequin lyric “She thinks I’m much too thin / She asks me if I’m sick“, and thought nothing about it–I tweet lyrics all the time (it turns out I have lost fifteen pounds, which is crazy, but since I never weigh myself I don’t know the timespan that occurred within).
The real irony comes in two places, the first the obvious that I was still super sick. The second piece of irony is, the album that song is on, Everything in Transit, culminated recording the same day lead singer Andrew McMahon was hospitalized for anemia then diagnosed with leukemia–the album has all kinds of random hospital/doctor references that were really foreshadowing to what would happen next in Andrew’s story (later on, the album ended up coming out the day he got a bone marrow transplant)–my tweeting of his lyric foreshadowed the next 24 hours in a similar way as his own story was foreshadowed by the album, which is really surreal.
In the darkness, blessings, however, shine through. And two things remain in everything: perseverance and hope.
And, the story continues . . . and I am very thankful that it does . . .
“When I think I’m letting go, I find my body it’s still burning
[…] I need light in the dark as I search for the resolution.”
–the resolution, jack’s mannequin