I had the most perfect day and it ended with me in the emergency room. My day was filled with training clients, teaching a Pilates class, going for a beautiful run along the Charles River, taking some self care time afterwards to foam roll, I went home and played with my dog, and finished up back at the gym making plans for my clients. At 7pm when I stood up from my desk I had no feeling in my right leg and my ankle buckled underneath my weight. I tried to shake it off. I used the chair and desk to brace myself and regain my balance but the feeling in my leg didn't return. I figured out how to carefully walk with the numbness and got to my car and drove home. By 10pm I started losing the feeling in my left leg too. I went to bed anyways but at midnight my dog woke me up and I was losing feeling in my groin, lower abdomen, hands and forearms. My dog, Bodhi, was wide awake and alert. It was so out of character and I could tell something wasn't right in my body that I decided to head to the emergency room at Faulkner Hospital. My right leg was essentially out of commission but I could get the rest of my body moving enough and managed to drive two blocks very slowly as I couldn't quite push on the gas pedal.
I was quickly taken into the ER and they immediately sent me for a CT of my head and an x-ray of my ankle to make sure it wasn't broken. Before I was sent for the tests my doctor informed me that it could be a very rare disease that I would need a spinal tap for but we would cross that bridge once these test results came back. Both tests came back fine and it was time for the spinal tap. I'm not sure why this seemed like the scariest test ever but I felt pretty uncomfortable being all by myself at this point. Luckily the nurse and doctor where quite impressed at how well I handled it and stayed perfectly still. It was time to get some blood drawn and an IV placed, on the third attempt we had success! They were very concerned it could be Guillain Barre Syndrome and that it's next stop would be my lungs. Because Faulkner does not have a 24-hour neurology department they decided to transport me to Brigham & Womens.
At Brigham & Women's I waited in the ER for hours until I could go in for a spinal MRI. The test took an hour and twenty minutes of being perfectly still. At this point I was having small tremors in my left hand and I had several moments in the MRI where it was difficult to breathe. I'm not sure if it was because my nerves weren't working properly but I wasn't feeling worried about the loss of feeling in my body. It felt like it was a slow controlled loss and I felt very calm overall. After the MRI I was sent up to my permanent room on the 16th floor and my hospital stay began.
Thankfully my friend Derrick met me in the ER before my spinal MRI, waited patiently for the test, and headed up to my new room with me. My phone had died at this point and he helped me manage to contact the clients I hadn't cancelled yet. I settled into my new room. My roommate was a sweet older woman who could only speak Spanish. My nurses were all amazing and very attentive. I met my new doctors and settled into my new home. Everyone kept mentioning Guillain Barre Syndrome but nothing was definitive yet. I was told I would need a blood thinner before bed and that it was standard protocol....so I refused until the doctor would come explain why I specifically needed it. I didn't quite feel like the average patient so I wanted to make sure it was absolutely necessary. Unfortunately because of my lack of mobility they felt it was important to stick a needle in my belly every night before bed. This began ten days of nurses complaining/joking I didn't have enough belly fat!
This morning I woke up feeling a little better. The numbness had dissipated everywhere except for the right leg and right arm. I was walking a bit easier with the walker but my balance was poor and I had no reflexes. When my neurologists tested me they thought I had really turned a corner and felt that in three days the worse of my problems would be my sprained ankle. I was sent for an EMG which was probably the most painful test of my entire hospital experience. For two and a half hours they continually sent electrical currents/shocks into the nerves in my legs. The peroneal nerve was acting so irregular that the doctor insisted we keep repeating the test. My right leg was pretty cold so we soaked it in hot water for about five minutes and ran the test again. Then another doctor tried it again....and again. They told me the information was very helpful and sent me back to my room. I was exhausted but trusted the hospital, doctors, and nurses to keep me safe so I still wasn't worried and was just hopeful and optimistic that this would all be figured out soon.
This morning I woke up feeling worse...much worse. I couldn't walk at all and my right leg was just dragging behind me. I was disappointed that I had regressed. My mom told me that my dad had left sided hemiparesis that was never diagnosed so when I told the doctors they sent me for a brain MRI. After my brain MRI I got to go to my new room on the neurology floor. As I arrived in my room I had flowers waiting for me from The University Club where I work. It made me feel better. They decided to begin five days of immunoglobulin treatment for Guillain Barre Syndrome as the only test we had answers from were the EMG, all other scans were clean! They pre-medicated with Benadryl and Tylenol to prepare for any possible allergic reaction or headaches. As treatment began I started getting a pretty major headache but everything else was going smooth. Treatment went from about 4:30 until 10pm and it was time for bed. I was a little nervous about going to sleep because I didn't want to wake up worse again but sleep came quickly.
My goal today was to walk to the elevator sign. After my shower my nurse walked with me but I couldn't make it. I was dripping in sweat, lightheaded and had a killer headache. Then Derrick came and I tried again but I didn't make it. By the time we got back to the room I had flowers and balloons waiting for me from my mom. Derrick had made some essential oil blends to help with nerve stimulation and then my friend Jen came and massaged them in for me. It was time to attempt my third walk and I made it to the elevators! It felt like such an accomplishment to reach my goal. I was secretly hoping that by the end of treatment I would be able to walk out of the hospital on my own.
In the middle of my second treatment I was able to wiggle my toes a tiny bit. I have been trying so hard to do that for five days now! Unfortunately during the middle of my second treatment my IV failed and I had to wait to get a new one. The first nurse from the IV team failed. She failed three times before giving up. Then she sent somebody else. I told him I was confident he would get it the first time! He wrapped my arms in hot wet towels and wrapped warm blankets around the towels. He said to stay like that and I jokingly asked him to turn the lights off so I could enjoy the spa treatment. I was right and he got me on the first try but it had to be the worst spot possible! He placed it right in the joint of my left wrist which meant I could no longer use my walker very well and I also couldn't eat with my left hand anymore. Other than a pretty bad headache the infusion was a success.
My walking wasn't so great today. My foot was dragging quite severely. My nurse was pushing it forward every step so I could at least pretend I was walking. I felt a little disappointed to have another set back in my mobility but decided to do all my physical therapy exercises in bed and make the best of what I could do.
Treatment three had a big scare, I suddenly lost complete feeling in my right arm and right side of my face. I got so scared I actually had a tear roll down my cheek for the first time of this whole ordeal. They stopped treatment and waited for my doctor to come check things out. Within about five minutes I started regaining feeling. My doctor said it was a complex migraine. I learned that people have migraines without headaches and it can present as paralysis. Honestly, I thought it was a load of crap. How did half my body go completely numb and as soon as they stopped treatment I regained feeling? Well we restarted the treatment and I was okay. I developed a severe headache, even worse than the night before. I strapped a ice pack to my head but it was so painful I couldn't sleep at all. Finally around 1am they decided to try Reglan, an anti-nausea medication that has been shown to help migraines and about an hour later I finally fell asleep.
I was able to lift my foot off the floor a little bit today. I took two steps holding on to my physical therapist but wasn't quite strong enough and had to really twist my hips to push the right leg forward. My physical therapists told me not to bother walking with the placement of the IV interfering and that I would get enough practice in rehab so that was my only walk for the day. Treatment four made me very sick to my stomach but they were able to give me something and it went away in about an hour. I had to figure out how to lay my hand at the correct angle for the IV not to hurt in my wrist but other than that there were no complications. Tonight I start taking amitryptaline as a preventative measure against these complex migraines. It is supposed to make you drowsy so I get to take it before bed.
Drowsy is an understatement. Vitals last night felt like I was a zombie and my strength was completely gone for my neurological testing. Once it wore off I was able to walk holding on to my physical therapists hands with one of them on each side of me. I still have to watch my feet every step since I can't really feel where they are going. My secret goal of being able to walk out of the hospital on my own today was crushed...that and the fact that I was told I would need two weeks of inpatient rehab to learn how to walk before going home. Hematology came by to let me know that my platelets and white blood cells had dropped quite dramatically during treatment and let me know that they would have to go up before I could leave the hospital and my dreams were further crushed. I knew they were lofty and hopeful but that's just who I am. Treatment five ended with my left hand going numb for an hour. I didn't even bother telling my nurse when it happened but when I mentioned it after and they said it must be another complex migraine without a headache. This still felt very peculiar to me and made me feel uneasy about this being a part of my daily life.
Today I was able to walk on my own! It wasn't perfect and it was probably quite clumsy but everyone was quite impressed at my progress. Unfortunately my white blood cells had dropped to dangerous levels and I needed to be moved to a private room now and put on a neutropenic diet. This was quite disappointing as it meant no raw fruits or vegetables. Although I understood the risk of the bacteria from raw foods I also felt like it was silly I couldn't have the vitamins that they provide. They said I could have fruit with peels so I kept up my banana and orange intake.
Today I was cleared to take walks by myself as long as I told the nurse and wore my mask. I was told that since I was walking so well that I wouldn't have to go to rehab and would be able to go home once my blood cooperated with the rest of my body. Veronica came to visit and brought me some clean clothes and danced around my room with resistance bands to entertain me. I read my motivational book to keep me motivated, listened to classical piano music to keep me relaxed, went for another walk and took a couple naps. I saw all my doctors from neurology and hematology and even got to see infectious disease today. It was not very helpful since I had the immunoglobulin treatment they won't be able to test me for anything until the end of next month when it is out of my system. My doctors did decide to switch me from Amitriptyline to Nortriptyline to prevent the migraines since it was making me so drowsy and incoherent every night.
Freedom!! I had a cute and very friendly nurse come to suck my blood this morning. Always a great way to start the day and I felt very hopeful that my white count would be high enough to go home. I told my nurse that I was going for a walk and did a lap around the floor and practiced a flight of stairs. A random doctor gave me praise for pushing myself so hard on my own. I headed back to my room and ordered breakfast and waited for the results. Finally, doctors came with good news and told me I could go home. My mom came from Maine and helped me get home and get settled into my new and different life. I would have nurses coming to the house for the next three days to give me my B12 injections and check on my vitals and was told to continue the nortriptyline as a migraine preventative.