I bet you're thinking, what in the world is a Thymectomy? I hadn't heard of one either until I was diagnosed with Myasthenia Gravis. It has nothing to do with the spice commonly used in Italian food, Thyme, and it doesn't have to do with the removal of your thighs either. A Thymectomy is actually the removal or your Thymus gland. Next you might be thinking, what in the world is a Thymus? A Thymus is an organ in your upper chest that creates T-cells which help fight infection and helps grow your immune system.
Shortly after being diagnosed with Myasthenia Gravis, my neurologist ordered a CT scan which would reveal that my thymus was very large, covering my whole chest. A thymus at my age should be the size of a dime or smaller. Most of the work done by your Thymus is complete when you’re an infant or child and thus, the importance of it decreases into adulthood. It begins to shrink as you age but for some reason, a lot of patients with Myasthenia Gravis actually see it grow causing an immune system disfunction.
It was determined that removing my thymus would be beneficial to the course of Myasthenia Gravis, potentially reducing symptoms and possibly even triggering remission at some point. I opted to have the surgery in hopes to see some improvement. I had wonderful friends who gave me excellent referrals to a Cardiothoracic Surgeon. After getting 2 opinions, I opted for the referral. I knew I was in good hands, but leading up to the surgery, I was still a mess. I hadn't ever had major surgery under general anesthesia before. I was so scared in fact, that I made sure I had my will and trust and power of attorney in order. I completed all of my Christmas shopping for our family and especially our 2 boys even though it wasn't even December. The stress obviously didn't help my situation at all and my vision became so unbearable I couldn't even walk. My husband had to carry me to bed on many occasions and I would lay in the dark, sobbing to him.
Despite all that, the surgery went well. I had a wonderful surgeon who was able to remove the entire Thymus with no residual tissue so it couldn’t grow back. I only had a couple of small incisions on the side of my breast which have completely healed. I was able to come off of the ventilator from surgery immediately which was my biggest concern having MG although my breathing was very challenging while recovering in the hospital. I couldn’t lay flat, or take a satisfying breathe. I assumed that was a result of the surgery or the chest tube and didn’t feel the need to even mention it to anyone. I had a collapsed lung as a result of the surgery and also developed partial pneumonia in one of my lungs while I was in the hospital. Both of those eventually resolved but the breathing issues continued. My total stay in the hospital was 3 days although it took me much longer to recover. Surgery happens to be one of the triggers for flares or exacerbations of Myasthenia Gravis, and many other chronic conditions. Obviously, it's due to the physical and emotional stress on your body.
After I was discharged, I tried to go back to living “normally” as if nothing had happened. Although I noticed immediately that my vision had improved and so did my leg and arm weakness, I still felt awful every single day though. I couldn’t breathe, my body in general felt weak and I was extremely exhausted. Normal for having surgery, I assumed. Although my official surgery date was on December 7th, 2015, by the 2nd week in January, my breathing had only gotten worse. When I started to see grey and tunnel vision, I finally relented and went to the Emergency Room.
SpO2 levels are not reliable in patients with Myasthenia Gravis as they may only drop after life threatening failures of the respiratory system have occurred.
Once there, I remember pacing with anxiety up and down the halls because my breathing was so bad I was afraid I would black out. When they finally took me back, they checked my SpO2 which were normal so they sent me back to the waiting room. Side note: SpO2 levels are not reliable in patients with Myasthenia Gravis as they may only drop after life threatening failures of the respiratory system have occurred. My neurologist, who was a God send, had given me his cell phone number in case of an emergency. I called him at 10:30pm on a Friday night and explained what was happening. I would have to pause frequently from being breathless and my mom would take over. He immediately called them to explain what was happening and what they needed to do to determine if my diaphragm was weak. Right after his call, they brought me back to a room where I had multiple pulmonary function tests. It was determined that I was at 50% lung capacity and that I needed to be admitted to the ICU for emergency IVIG. That hospital stay was one of the scariest things, if not the scariest, I’d ever gone through. None of my nurses during the whole week I was there knew what Myasthenia Gravis was.
I began IVIG around midnight that evening. I was not given pre-meds, I was not hydrated or given saline, and my infusion was ran very quickly, less than 3 hours. I had no idea what to expect or what IVIG even was so I wouldn’t have known that they had just set me up to have a serious reaction. I was fine throughout the night and morning. I even felt a little better. By 3pm that day, I began to experience a massive headache. With a history of migraines, this was like nothing I had ever experienced. I couldn’t my neck or move my head and it felt as if my brain was pulsating with even the slightest move. In addition, I had major chills and felt nauseous. I was alone at the time so I called for a nurse. Immediately upon her arrival, I threw up and was escorted to the bathroom to throw up more. I told her how much pain I was in and after checking my temperature, it was determined I also had a fever. She told me it had nothing to do with the IVIG, a reaction would not be delayed. Maybe I had picked up a virus from the hospital; that was more likely. The doctor on staff agreed. I knew something wasn’t right though so I called my husband and mom in tears who then called my neurologist. He argued that this was a reaction of IVIG and it was later determined I had aseptic meningitis as a result. I skipped IVIG that day but continued for the next 4 days. The next day, they decided to give me Benadryl as a premed to reduce any side effects. The nurse opted to create a line in my jugular rather than going through the iv for IVIG. Not every person with Myasthenia Gravis will have issues with Benadryl but some will. She gave me a heavy dose and pushed it through quickly. Almost immediately, I couldn’t talk or swallow. I remember looking at my husband with fear in my eyes, trying to signal to him that I couldn’t talk or swallow. The nurse tried to get me to drink water which I immediately choked on and then drooled out. It was awful. I couldn’t wait to get out of there. Thankfully, the 3 days after that were uneventful and I was sent home after a total of 7 days.
Once I returned home, I felt even worse than I did after surgery. I felt like I was on death’s doorsteps. I remember showering and going though the motions but inside thinking I could die at any moment. I’d put a brave face for my kids and even took them to the park all the way being unable to breathe and being so weak I could barely walk.
Picture 2 days after I was released from the hospital. Faking a smile as best I could for my babies.
When my breathing didn’t improve after a week, my doctor admitted me into the hospital again but this time for observation since it was clear I was in an exacerbation and not in a crisis. It was my birthday weekend and I was hosting and running a competition for my gym that weekend so I didn’t want to be there. My priorities were obviously distorted and I was still in somewhat denial of this disease. His colleague, and the neurologist on call, came to visit me and offered me 2 options. A) We could begin plasmapheresis which require me to stay another 10 days in the hospital or B) I could agree to a high dose of prednisone and sent home to see if I’d improve. Up until this point, I had refused and been 100% against any immunosuppression but I felt awful and I really wanted to go home so I relented. I was sent home at 20mg every other day with the orders to increase up to 120mg every other day. If you know anything about prednisone, you know it’s the Devil’s drug where you get a little bit but sacrifice ALOT and 120mg is an insanely high dosage that would only increase those side effects. I survived the weekend and within a couple of weeks, I began to feel better. I was so relieved.
At the end of the day, I wish I had been more prepared about what to expect from the surgery. In hindsight, I wish I would have known how I would feel afterward just by knowing how much surgery can impact Myasthenia Gravis, regardless of what kind of surgery it is. I assumed I would just feel better immediately and unfortunately, that wasn't the case. I do believe that the surgery had a huge role to play in my vision improving and my leg and arm weakness also so I am extremely grateful and would do it all over again. It was a journey, and it continues to be, but that experience in particular taught me a lot about advocating for yourself and about being as informed as you can on your disease because it's ultimately your life!
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