Starting on Wednesday, May 20th I began getting chills and a fever after work. Thank goodness we had the Thursday and Friday off for a holiday! That night I took the train to Bruce's, feeling a bit better, mainly due to having some medicine in me. Thursday I spent the entire day curled on the couch with fever, chills, body aches, and overall just feeling lousy. Friday, I felt a bit better, while not fully recovered I could function at a basic level as a human being (i.e. showering, making something to eat, etc.). It was that day that I felt some pain around my ribs on the left side when I inhaled. I've had this kind of pain before, kind of like a cramp when you go jogging, and it usually subsides on its own. I figured I tweaked something and didn't think anything of it. That night the pain continued and kept me awake because any position laying down was painful. I took to coming out and trying to get some sleep on the couch, usually in a seated position.
After the whole day or worse pain on Saturday and another sleepless night that night, Bruce and I decided to go to the ER at the Westpfalz Clinic downtown around 6:30 in the morning on Sunday. At this point, walking and breathing were incredibly painful. I must have looked like I was 100 years old walking hunched over holding my side, bags under my eyes from lack of sleep. We waited in the ER for about 30 minutes before the doctor was there to see us. They took an EKG, which showed that my heartbeat was short and fast, mainly due to me not being able to take full deep breaths without painful stabs in my side. Next, we walked up (slowly) to the radiology unit where they took an X-ray of my lungs to see if there was anything unusual. Coming back down to the doctor, he said my lungs were clear and he thought it had something to do with the intercostal muscles, the ones between the ribs. It was this time that I decided to add some excitement to the morning and fainted in the chair in front of the doctor's desk. I woke up with them carrying me to the bed in the room and getting my first of many IVs to come to get some fluids in me. We left the doctor with the advice to go to an Orthopedist thinking that maybe my pain was due to some issue with my spine. Monday, I hobbled into the doctors office where they took an X-ray. [I called them today to ask if there was anything in the results of the X-ray that would have made the doctor send me to the ER this day instead, but unfortunately the doctor was unavailable to talk. I have to make an appointment with him to see the results]. After the X-ray, the doctor decided to do some spine adjustment aka a form of medieval torture where I was pushed, pulled, and twisted until I couldn't hold back yelps of pain. Walking out of that office feeling worse than I did when I walked in, I wasn't sure I could handle the pain much longer.
With another sleepless night, I called mum the next day (Tuesday) and she advised me to get an ambulance to the ER. Usually, I'm not one to make a big fuss out of pain, but this time I followed her advice and struggled with the bumpy ambulance ride. It was there that I was taken in to a different area of the ER (apparently the one we went to before wasn't really a part of the same hospital? No idea..). The doctor took an ultrasound, they tried taking blood (always a bit of an issue for me and my doctor-phobic veins), and they took another X-ray. This was when my visit began to get a bit blurry. I got some antibiotics (actually some that I had a minor allergic reaction to as a kid, but turns out I've grown out of thank goodness) and was put into a ward until it was time for surgery. I can honestly tell you that I don't remember the trip to the surgical room or getting anesthesia. The brain is an incredible thing, blocking out certain memories or painful experiences. Typing this up actually, it is hard to remember the pain I felt at the beginning of all this (probably for the best).
This is where I might lose some of you. If you want to skip this paragraph I understand why, it's not the nicest subject matter. I know anesthesia can do strange things, but I believe there was a point where I was semi-conscious in the ICU during this time. My memory has a 'Saw Movie' feel to it where everything was dark and red and I just remember feeling terrified and in pain. I only remember flashes of it now. At one point I felt that my fingers were being cut off (looking back this could be the nerve damage pain after surgery) but I remember trying to count them or even just feel them to see if they were there. Then I felt like they were tearing out my hair in handfuls (talking to mum, she thinks this was when my body shut down and they pulled back my head to open my airways and get the ventilator tube down my throat). With the tube in, talking was obviously impossible, however I tried to communicate with the nurse Hannah, who I remember vividly in this strange dream/anesthesia reality. I tried to tell her that I wanted to call my parents to tell them to come help me. She tried to comfort me and say it would be ok, but I shouldn't talk (at that time I thought this was all some horrible joke and that my parents weren't coming, no one knew where I was, and that I would be there like this forever). I then tried to explain that I could write to them, but again, she told me to relax and it would all be ok. I remember my hands being tied down so I tried to get out using my legs, not sure what it looked like to those around me, or if my legs were actually doing anything but I was desperate to get out and be free from whatever nightmare I was stuck in. I can almost feel the tube in my throat and trying to talk. The next flash of memory was seeing my dad walk in, with a medical cap, mask, and gown. Seeing him was one of the most relieving feelings I will ever have in my life. It was at that moment that I knew it wasn't a terrible dream, and that I wasn't alone. I think I must have drifted off as soon as I saw him, my body and brain finally able to relax. Some of this might seem dramatic, but it's what I remember for better or for worse.
The next few days all blend together, remembering flashes of family, Alex wearing my cat t-shirt, mum reading Harry Potter, and seeing cards and flowers from friends, family, and coworkers (which I had to reread later, because I couldn't remember them completely). As I started to wake up more and more I noticed just how weak I was. My breathing was shallow and I needed help moving in any way in the bed. Nurses came in to wash me daily, and I lost all sense of embarrassment or shame, as I let doctors and nurses prod, push, and check various tubes and sutures that covered my body. As soon as I was able to move with a bit of help, the PT began. It started with just sitting up in bed, doing breathing exercises (Which left me exhausted and light headed) as well as using a pedal bike to get my legs moving (awkwardly and very ungracefully at first). Even speaking left me breathless. I can't thank my family and Bruce enough for being there to support me during these first few days. Offering to stay at night to help with anything I might need. Alex had the worst of it I think as the first night-watcher. My legs were restless (due to the medicines and lack of movement), I was coughing relentlessly, but she was my super woman, not having any fear of going out and grabbing the nurses to come help me no matter what time of night. The biggest issue we had as I started recovering was my lack of appetite. The idea of food turned my stomach, so there were moments where I would have two bites of yogurt or soup and turn green. The ICU wouldn't let me leave until I was more mobile and eating more, but I couldn't force myself to.
The first day the PT doctors had me standing and attempting to walk, my feet felt like giant water balloons with pins-and-needles. It was uncomfortable and difficult. Trying to keep my head up and breathing deeply we walked about 6 paces to the other side of the bed when I told them I felt dizzy. They immediately sat me down in the chair and the next thing I remember is about 12 doctors and nurses all leaning over me like a football huddle with my legs up in the air. It was a bit scary not knowing anyone around me and forgetting where I was. Beth, my angel there at the time saw my confusion and came to make sure I knew it was all ok. Carried back to my bed, they decided that was enough walking for the day and hooked me back up to all my tubes and wires surrounding my bed.
Overall, the time in the ICU once I was able to be a bit more mobile (difficult with all the tubes and wires connected to me, all blended together. Napping, blood pressure checks, blood testing, new medicines, shots, family time, trying to eat, PT exercises, and doctor visits repeated themselves throughout the days. The nurses were beyond incredible. I think they were just glad to have a patient who wasn't elderly, and/or grumpy, and who wanted to work hard to get better for some independence. They kept me company and helped me with anything. One, Nadine, came in during her free time and washed my hair (after more than a week it was looking rough). We talked as she washed, brushed, and braided it. It's amazing how that makes you feel so much more human. One of my last ICU nights, a nurse came in to the before-bed procedure of taking blood when fireworks started from a festival downtown. She turned off the lights and we sat watching them for a while, which she didn't have to do, but she chose to. I can't thank the nurses and doctors there enough for their kindness and patience with me. Saving my life is something I cannot ever repay them for.
Grandma flying in from England was a special treat as well, she kept me company a few evenings while the family went off to parties with their hosts and other new friends. The family (Tina, Rainer and Max) that my...family...stayed with are friends of Uta, who we spent some time with on mum, dad and Edward's visit earlier this year. They live down the street from Bruce which was incredibly convenient and they were so welcoming and helpful to my parents as we worked through all of this. Even as my family has left, they continue to offer help, company, and friendship for which I will be forever grateful.
During my last few days, after being moved 3 times around to different rooms/wards, I was mentally ready to be released, even if I wasn't physically ready. I had been put through neurological testing to see the extent of the damage to my axillary nerve in my left arm (painful experience first thing in the morning, or any time of day for that matter), my first CT scan, which just felt super strange, and endless (mainly fruitless) attempts at getting an IV into my arm or blood taken. My veins had either stopped giving blood or they were too small so they burst. I would watch my roommates giving blood with no problem, but the nurses and doctors who were lucky enough to get me as a patient took up sometimes up to 45 minutes trying to find something. Now I have nice little dots lining the crooks of my elbows, my wrists (top and bottom) and the tops of my hands. Even one on my foot. These join some great battle wounds on my neck, chest, and legs from tubes and incisions.
For now, I have a lot of free time on my hands. Rainer found my a GP doctor around the corner who I've seen a few times for check ups and blood tests. I've started physical therapy where the trainer there is focusing on my lung strength and getting mobility back in my left arm, trying to heal the nerve. Bruce has been incredible taking me to doctors appointments, PT, and just taking care of me during this time. I couldn't ask for more. If I wasn't here with him when I got sick, who knows what could have happened. There are so many "what if" situations, with timing (this infection can attack and get worse within hours), machines (the hospital had only two ECMO machines, which saved my life, if there hadn't been one available then...), and my body's ability to fight (who knows where that power came from). I try not to think about how close it came, of course I was asleep for the time when it was the scariest for those around me. It makes me appreciate everything much more though. Once I get stronger, I will look back and think about how difficult it was to walk, go up a few stairs, or even lift my arms to put my hair up. Of course this time has also shown me how many people I have behind me to help, send love and positive vibes, and support me. I was overwhelmed when my family showed me the blog views and comments, and of course as soon as I was able to access Facebook, Beth helped me look through the incredible amount of love from you all around the world. I don't know how to thank you enough besides working hard to get better and stronger!
The more medical information and processes, as well as what happened when I was "asleep" can be found in the Caring Bridge blog from my dad. I just wanted to give another perspective from the one in the bed, as opposed to those around it. I will keep everyone as updated as I can over the next few weeks!
Until next time
German phrase of the post:
"Die Heilkraft des Harry Potter ist nicht zu leugnen"
"The healing power of Harry Potter is undeniable"
xoxo- this post dedicated to my amazing family <3
Your story is inspiring. Even though I was there when (most of) it happened, it's truly fascinating to hear it from the side of the patient; just a reminder what we're fighting for. All the best, Laura!
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