I had my thymectomy in October of last year. Initially, the plan was to blog about the procedure and progress from the hospital, to document every step along the way. Yeah, all plans went to hell with that.
The surgery and its aftermath was quite certainly the worst experience of my life. Nothing prepared me for it. My doctors certainly didn’t. I was told it was a routine procedure for MG and that given my young age, it was worth a try as there was a good chance (40-80% depending on who you ask) it might send my disease into remission. They pushed for it even more once they found I had thymic hyperplasia, which was potentially tumorous. My thoracic surgeon recommended it. My neurologist recommended it. My primary care physician recommended it. Heck, even my functional medicine doctor said it was worth a shot.
Thymectomy is generally considered to have the best results if it is performed 12 months to a year from the onset of symptoms. That was another reason I was urged to have the procedure sooner than later. They explained that there were three types of procedures: transsternal (where they basically crack your chest open), transcervical (where the thymus is removed through incisions in the sternum), and robotic or VATS (the least invasive one). I would either have the transcervical or the robotic one, pending availability of the robot. In case of complications, either procedure might have to be changed to transsternal in the surgery room.
Because I am in the US all by myself (doing that bloody doctorate), my first question was how serious the surgery was and whether I would be able to take care of myself afterward. “If I can’t get through it by myself, I’m not doing it”, I said. My thoracic surgeon said that I would probably be out in 2 days and that I “should” be able to take care of myself without help, as long as they didn’t have to perform a transsternal thymectomy. Both my neurologist and my thoracic surgeon warned me that there was a “slight chance” I might go into a myasthenic crisis, although they both suggested I wasn’t a prime candidate because I had never had a crisis before, and because my MG wasn’t respiratory.
My second question was regarding potential complications. “What should I expect?” It was possible that they might have to crack my chest open, in case the thymus overgrowth was impossible to remove otherwise. There was also the possibility of infection, injury to the lung, as well as nerve injury, but all of those were rare.
I took some time to mull it over and discuss the logistics with my PhD mentor. Eventually, I decided to go ahead with the surgery. In preparation, we did an MRI, run blood tests and a pulmonary function tests. All looked fine. I also got my IVIG infusions just a few days before the surgery, to minimize the potential of a myasthenic crisis.
I was admitted to the hospital on a Tuesday morning. I was “strongly advised” to get an epidural to help with the pain. I refused.
The surgery was scheduled at 12:00, I was supposed to be out by 5:00, I was actually released from the recovery room around 9:00 PM. I knew something was wrong when I woke up. I could hardly keep my eyes open, my speech was slurred and I couldn’t move my hands. I had to ask my friend to hold the water cup, so I could drink.
The doctors were cryptic. My surgeon came by to reassure me that the surgery had gone well and that se had removed all the thymus tissue, which was now being sent to the lab for biopsy. Her job was done. I should be out in a day or two, that was the story, still.
My best friend pointed to the tubes coming out of each lung, draining what looked like fluid. I couldn’t see it but apparently there was a lot of it. Why had nobody mentioned the tubes before? I had multiple needles sticking out of my hands and arms, over five if I recall correctly. As the night progressed and the pain medicine wore off, I started feeling my body and (my pain) more and more. Every movement was hell.
The next day, the feeling that something was off, intensified. My speech was still slurred. I’d never had slurred speech before. I couldn’t hold anything, let alone feed myself. Not that I was hungry. Meanwhile the nurses started pushing me to get up and walk. They wanted to have me released. Released to where? To what? Did I mention I couldn’t lift my hand, let alone get out of bed?
I had a catheter for the first day or two, which was a relief, but they had to take it out because apparently it can get infected. Once the catheter was out, I had to get out of bed to use the restroom. I couldn’t get up without help (I literally had to be pulled) and the pain was excruciating. I thought I was getting stabbed all over my ribs. It wasn’t the incisions that hurt though, it was the nerves around my ribcage, which was too much for my nurses to process, apparently.
Meanwhile they just looked at me with frustration. Why couldn’t I get up? Why couldn’t I stand? They had to walk me to the toilet, watch me pee and wipe me clean, because I couldn’t wipe myself. They thought that because I was young, I had to be strong. I could see it in their eyes. Ever heard of MG folks? The trip to the restroom was so exhausting that I literally passed out right after getting into bed. After I’d gotten over the pain from lying down, that is. On my second or third trip to the toilet, I got so weak that I blacked out and had to be carried back to bed. Literally.
That’s when the doctors came in and for the first time talked about what happened in that surgery room. I almost had a myasthenic crisis. They barely managed to pull me out of it, hence the delay in the recovery room. Now the surgery had exacerbated my symptoms, caused a major flare-up. They didn’t really know what was happening to me beyond that. They had emailed my neurologist about how to go about it, but hadn’t heard back from him yet.
One of the doctors at some point hinted at the fact that I had reacted to one of the pain medicines and that this caused the flare-up. Somehow this resulted in me being under-medicated for pain during most of my stay. I was in so much pain, I was regularly crying.
My blood pressure was also very high, around 160/100. Meanwhile there was still fluid coming out of the tubes in my lungs. Regardless, the nurse kept talking about releasing me ASAP. “With the tubes still in my lungs”, I asked sarcastically? “Sometimes we do that”, she responded. I don’t think that she knew what she was talking about.
Because of some issue with the fluids in my lungs they put me on a no fat diet, which basically meant I couldn’t eat anything at all. They kept trying to feed me instant noodles and sugar-free Jello. Yum (NOT). I ended up barely eating at all.
On day four. I was told I would receive an IVIG again. Apparently my neurologist had gotten back to them. The IVIG worked, almost like magic. I was able to keep my eyes open for more extended periods and my slurring improved. They brought some neurology students in to observe me and they started pushing – even stronger – for release. I explained I lived alone, in a house without an elevator, and that my closest relatives were thousands of miles away. Nobody cared.
Mostly I think because of the opioids they were giving me, I also started to struggle with constipation. They had been feeding me a cocktail of laxatives and stool softeners, but they weren’t doing anything for me. “You have to try and poop” they kept saying. Sure thing. Then they started the threats. “If you don’t poop we’ll give you an enema, you can’t keep all that stuff inside you, it’s toxic”. Well, they got their wish. They first tried something that I think was a soapsuds enema. It burned so bad, I started crying uncontrollably. It also didn’t help a bit. Next they we did a water enema. That didn’t hurt, but it also didn’t make me poop.
On top of it all, I developed pericarditis, likely because my heart’s epithelium was somehow injured during surgery.
Nothing, however, freaked me out more than their insistence on releasing me with nowhere, literally, to go. I couldn’t even sit upright in a chair at this point, but they suggested I fly back to Europe to my family. After putting me through hell, they finally started talking about rehab. But I had to be evaluated first. A physical and occupational therapist had to sign off and neither of them were convinced that my condition was serious enough to warrant rehab. It’s just Myasthenia Gravis. It would be very hard to get into rehab, they insisted. At last, the hospital wing manager (or something like that) stepped in and was quite sympathetic. He recommended my admission to rehab for a week, pending insurance approval.
On day six, insurance approved the rehab and on day seven, I was finally transferred via ambulance to a new rehabilitation institute in town (more on that soon).
At this point I still couldn’t sit upright (due to a combo of weakness and excruciating pain), and I hadn’t pooped in seven days. My heart was inflamed, my blood pressure still alarmingly high, and I was starting to get migraines again, which I hadn’t had in over eight years. But hey, the tubes were finally out.
This post is a little on the lengthy side, so if you stuck with me, thank you. I also just wanted to recap on the major side-effects from the surgery, in case you are currently considering, or prepping for thymectomy:
Extreme weakness, beyond anything I had ever experienced. I couldn’t feed myself, wipe myself clean or keep me eyes open for several days post-op. I ended up being in a wheelchair for over a month, and used a walker for about another month and a half after that.
Stabbing nerve pain that the opiods (oxycodone, in my case) wouldn’t take away. I was later given gabapentin in rehab, and that finally provided some relief.
Pericarditis, which lasted several days and was, on top of everything else, excruciating.
Constipation, which is apparently pretty common post-op, but which for me was intolerable. I became so constipated that I had to be given two enemas back to back (after the first two failed ones), to get things going. My constipation, in fact, was so bad that it numbed my bladder and I could no longer pee. So then, I had to have my bladder scanned every few hours and a catheter inserted every time it got full and needed to be emptied. I was unable to poop for 9 days in total, and unable to control my bladder for 2 of them.
Debilitating migraines, which I hadn’t had for years and which were triggered by the stress of the surgery. They were paralyzing and the worst thing is that in the hospital they would only offer me tylenol or opioids, which didn’t help. I was eventually prescribed 1000mg of ibuprofen in rehab, which did the trick.
Drug mismanagement, while both in the hospital and to a lesser extend in rehab. I was constantly either under- or over-medicated. My medicine often arrived late, by which point I was in so much pain, I was crying. I was given painkillers that weren’t checked for compatibility with MG, contributing to the flare-up. It took them four – FOUR – days to put me on an IVIG post-op, when I was clearly in major distress. It also turned out that I was wrongly given Claritin for over nine days. Claritin was in my med list in their system, because I take it when I get my IVIG to prevent an allergic reaction. They were just giving it to me every fay post-op because they “thought” I had allergies – nobody checked the details.
Major emotional stress from not having my needs met AT ALL by my nurses and doctors. Nobody had any idea how to handle a myasthenic person, let alone someone with a myasthenic flare-up. They had no understanding for how weak I was and were expecting me to get up and walk to the bathroom with minimal help. I fell twice, I fainted once, eventually I got so frustrated that I started at screaming at them.
Overall, the time in the hospital was the most alienating, frustrating and painful time, since being diagnosed with MG. It was nothing like what I expected and, more importantly, nothing like I was told to expect.
(to be continued)
Image my Flickr user Surian Soosay and used under a Creative Commons license.