After I came home from the hospital, I thought things were going to get so much better. I was sure that I’d start to feel like myself again and that, just by being home, I’d be able to rest and heal from the perforation and all the damage done to my body.
I was wrong.
Instead, I came home from the hospital and found everything had changed. It was our house still, but it was different. The dining room looks like a hospital supply closet. There was an IV pole and giant bags of TPN in the fridge. There are still IVs in my arm because of the PICC line. I couldn’t even walk up the stairs to the front door without having to stop and rest a few times. Everything was the same, same couch, same bed, same joy to be living with Will, but everything was also starkly different.
I began to have panic attacks, moments where I could feel my skin crawling and was hyper-aware of every part of my body. At one point, I could have sworn I felt my spleen. I felt vulnerable, unsafe. What if something else happened? What if we couldn’t get to the hospital in time? These are the thoughts that kept me from sleeping, along with the fact that I couldn’t get comfortable, as I am only allowed to sleep on my back, elevated. My back has a drain coming out of it, which makes sleeping very uncomfortable. Plus, I’m a tummy sleeper. Always have been.
As the twitchiness continued, and got worse, I realized there was something bigger I had to deal with, some trauma that needed to be processed.
Here’s the truth: I could have died. I’m not trying to be dramatic, but it’s true. When my duodenum was perforated, the fluid filling my abdomen could easily have made me septic, which can often cause organs to shut down. This is part of what I have to process, part of what I have to deal with in order to make it through the next few weeks, and the next surgery.
So I’m going to write about it. Because that’s how I process and deal and align myself with the reality of my situation.
Here’s what I remember: On the morning of the ERCP, we were all scared. Mom, Will, my sister, me. Nobody wanted the ERCP because we had a bad feeling about it. But there was no choice. It had to be done to help figure out what was causing all the problems. Dr. Brandabur came in to pre-op at around 1, to chat with us, explain the procedure, and answer our questions. My mother looked him in the eyes and said, “Don’t mess up.” He took her very seriously and said he’d do his best.
They wheeled me back into the procedure room, where the anesthesiologist, who was lovely, gave me something to relax me. Then everything went dark.
When I woke up after the procedure, I couldn’t open my eyes. I was in total darkness. I had no idea where I was or what had happened. I just felt pain. Then I realized I was choking. I started to sputter, cough, and tried to pull the foreign object from my throat. That’s when I realized my wrists were in restraints. I couldn’t move at all. It was dark, my abdomen was on fire, I was choking, and I was tied down.
It was, by far, the scariest thing that has ever happened to me. It brought up dusty memories and I thought I was going to be sick.
I don’t know how long I was like that, awake but in the dark. It felt like hours. It could have just been 30 seconds. There’s no way to know. When I did open my eyes, I saw Mom and Will. They were blurry but they were there. I began to frantically sign to them using the ASL alphabet.
W-H-E-N. W-H-E-N. W-H-E-N. Over and over again. Will realized what I was doing and pulled up the ASL alphabet on his phone. The answer wasn’t good. They said it would be awhile, maybe an hour or two. I was choking, panicking, and stuck. I realized something had gone horribly wrong, but had no idea how serious it was.
I thought I was dying.
About an hour later, the breathing tube was removed (which was awful and painful and I hope to never experience that again). Mom and Will came over the the bed and tried to fill me in on what had happened.
It had been almost 24 hours since I’d gone in for the procedure. The scope perforated the duodenum, as well as an outpooching of unknown origin. It could have been a cyst or a diverticullum, but we didn’t know. It just shouldn’t have been there. The doctor explained it this way: “I went to clip the sphincter of oddi (which should have helped the pain I was having initially) and turned the scope. Suddenly, I was looking out into nothing, which meant I’d perforated the duodenum and was staring into the black space of the peritoneum.
When that happened, my body started to leak peritoneal fluid and bile in the abdomen. This is a very bad thing because it can cause infection, which often leads to sepsis. Dr. Brandabur tried to quickly place a stent in my bile duct (the other thing that needed to be fixed) but it was so scarred and shriveled that the stents wouldn’t fit. He finally used a makeshift stent that likely won’t hold for more than 6 weeks.
After the procedure, which took hours longer than we were expecting, I was moved to the ICU. Mom and Will were finally allowed to come back and see me at around 7 that night. Nobody told them I would be on a ventilator, so my mom panicked and demanded to know what had happened. She didn’t get answers until close to 1am. I could breathe on my own, but they needed to let my body decompress as much as possible. Also, they were worried about all the fluid in my body because, if I were breathing on my own, I could have easily aspirated the fluid, which would be bad.
From my perspective, I went to sleep on Monday, feeling a little sore, and work up on Tuesday, choking, tied down, in pain, and having no idea what had happened or why we were there.
I asked two questions, when I could finally talk.
-Am I dying?
And even though they explained the complications and even though Mom and Will swore that I wasn’t dying, I spent the rest of my time in ICU feeling terrified. I was in and out of consciousness, due to all the medication they were giving me. I felt totally separate from my body, while being trapped inside and aware of everything around me.
It was awful, you guys. I was convinced I was going to die and I was really sad, because there’s so much more I want to do.
Once we got out of the hospital, all of this hit me. The fear hasn’t gone away. Every time we have to go back to the hospital (for scans and tests and, just last week, another unexpected 3 day stay because of issues with the drains in my abdomen), I panic. I sit in waiting rooms, or lie on gurneys, and tears drip down my cheeks, unchecked. It all hurts and it’s all awful and I have no control over any of it. If they want to cut me open, they do. If they want to shove another drain into my body, this time in my stomach right by my belly button, they do. It doesn’t matter how much it hurts, or how it makes walking so difficult we had to rent a wheelchair, just so I could get out of the house like a normal person.
Except nothing about this is normal. It isn’t normal to wake up choking and panicked and restrained to a hospital bed. It isn’t normal to have a tube going through your nose and into your stomach, sucking the bile from your stomach into a canister. It isn’t normal to have two drains coming out of your body that have to be emptied and measured twice a day. Nothing about this is normal.
I ran a half marathon less than 8 months ago. Now? Now I need a wheelchair to go to Target, or to take my mom to see the tulips in Skagit Valley. Now I take handfuls of antibiotics every day, to keep the fluid that is still in my body from becoming infected. I spent 12 hours a day hooked up to TPN, my new nutrition, which makes me feel nauseated and puts a horrible taste in my mouth, all the time.
Nothing about this is normal.
I’m sorry I’m not being all Bright Side today. I’ve tried, with no luck. There are milestones people keep celebrating. “Look! The doctor said you can have two bits of soup! Real food!” And I know I should be excited but instead, all I can think is, “How did I get here? How did two bites of veggie soup become the greatest thing to happen in my life? And when will this be over?”
We don’t know.
So I’ll just sit here, on the same couch, and keep processing. I’ve come to terms with what happened to me in the ICU, or almost. But there’s another surgery out there, looming, scary. It’s like a grenade we won’t see coming until we feel the heat of the explosion.
And I’m scared I’m going to die on the operating table. Which is a silly fear. Because all the complications are minute, unlikely to happen.
Except it did happen, a complication. And it’s caused the last month to be complete hell.
So there’s no Susie Sunshine in this post. There’s just me. Scared, tired, sad, and mostly worried about how everything is different, especially for the people around me. I worry about my mom, who has been here for a month to help me deal with all of this. She spends her days flushing my drains and changing dressings and taking my temperature and checking my blood sugar, and hooking me up to TPN, even though we both know it’s going to make me feel awful. I worry about Will, who has a full-time job, plus a full course load at school, plus training for the big National Championship race in August. I worry about the burden I’ve become and how I’m not the person I was 6 months ago. I worry for his happiness because I’m not doing very much to add to it right now.
I feel like so much has been taken from me. And it’s difficult to see the light at the end of the tunnel because the tunnel keeps changing with each setback.
This has been a post.