I’m feeling a little dry, so this probably won’t be much fun. If you fall asleep, I won’t put your hand in a bucket of warm water, at least not right away. I’m not going to proof-read or edit, so please be gentle with me. I’m sure the errors will be innumerable. The fact that I’ve been somewhat ‘with it’ throughout all of this is not only amazing, but also sort of cruel. My brain is an asshole.
I’ve joked that I’ll keep going until I’m dead. I haven’t learned how to apply the brakes, which is to say, I don’t slow down even when I know I should even while I’m fully aware there will be consequences. It just hadn’t occurred to me that my ‘joke’ was prophetic. I’m sure this is because some part of me still doesn’t believe I’m sick. This can’t be happening to me.
Monday: I headed to the ER around 9pm. I had what appeared to be multi-organ failure. Heart was going kaput, kidney function was the closest to zero I’ve ever been in my lifetime, and my lungs were filling with fluid. My acidosis was treated, I was put on O2 and waited for the ACLS transport to haul me to a hospital equipped to handle me. In transit while I was chatting up the medic who was babysitting me, I blacked out. To me it felt like a panic attack – my heart was pounding so hard and fast, I was afraid it was trying to jump out onto the floor of the meat wagon.
Later I found out this was actually pulseless ventricular tachycardia, where my heart was beating so fast and so erratically, that absolutely no blood was being pumped out to my body. Essentially cardiac arrest. I had to get the shit shocked out of me (literally). Shortly after my arrival to the hospital, it started again and had to be corrected again. I spent the night in the ICU.
Tuesday: After being on the loading dose of antiarrhythmic overnight and getting dialyzed early in the morning, I was stable for several hours. My LVEF was low, at 25%. That means only 25% of the blood entering the left side of my heart was being pumped out with each beat. Normal is 55-75%. It was anticipated that I’d be moved to a normal room on Wednesday under the care of Cardio/GI and I’d be kept one more night in the ICU to continue to closely monitor my heart and begin blood transfusions. In the evening I had a chest x-ray to assess the edema in my lungs looking for change, I guess. Not more than a half hour later, a nurse brought me a large cup of gastrografin (water soluble oral contrast). My chest x-ray noted free air in my upper abdomen. This was a completely incidental finding. What’s the deal with free air? It’s not normal and can indicate a perforation somewhere in the GI tract.
CT confirmed several small collections of free air (the $20 word is pneumoperitoneum, in case you were wondering). I was immediately started on antibiotics and was interviewed by a surgeon and anesthesiologist. I was in the OR within three hours, very early Wednesday morning.
Wednesday: The best rest I had gotten in weeks. 😉
I had an exploratory laparotomy and my bowel was checked from colon to stomach. Two perforations were found, one in my terminal ileum and one in my stomach. The disease was so severe in my ileum that the only option was to remove it. I lost 28cm (a little over 11 inches) of my terminal ileum and the ileocecal valve – the valve between the ileum and colon. The stomach perforation had spontaneously sealed at some point, but the tissue surrounding it was so fragile that it was patched and sutured to prevent it from reopening. Significant inflammation was apparent in several other areas, but no other perforations. I spent the rest of the afternoon in PACU as they tried to wean me from the ventilator. During this time, the arrhythmia came back so the decision was made to send me back to the ICU. Bollocks.
Thursday: Pretty much uneventful other than some nausea/dry-heaving that refused to go away. That fucking hurt. Eventually a scopolamine patch worked and once I got super friendly with my PCA, I was good to go. I was once again teased with being allowed to leave the ICU and not be bothered every single hour, 24 hours a day. It was contingent on my electrophysiology study that was scheduled for the following morning. My heart failure is extremely difficult to treat, along with the arrhythmia, because the meds most often used caused my blood pressure to drop dangerously low and those that didn’t exacerbated my tachycardia. There was a small chance that ablation would at least help the arrhythmia, which in turn might reduce some of the stress to my heart.
Friday: I had my EPS and ablation wasn’t an option. Implanting a cardioverter-defibrillator is the only way to treat this long-term. Problem being, this is a sub-acute thing with a good likelihood that the underlying heart disease will reverse after my GI infection resolves and nutritional status improves. As a sort of bridge between an ICD and recovery, something called a wearable cardioverter-defibrillator was ordered. It’s basically a vest that will monitor my heart rate and when it senses v-tach or v-fib, it will warn me, and then defibrillate if I don’t deactivate it within one minute. The drawback is that it’s obviously not to be worn when showering, which is when I tend to have my more severe tachy episodes, at least with POTS. It may also misread sinus tachycardia (a normal, but fast rhythm) as a life-threatening arrhythmia and attempt to cardiovert then. I’m sure that’ll make my anxiety go through the roof.
Friday is when the post-op pain really began to set in. I was started on high energy IV nutrition (TPN). It took a little tweaking to get the dextrose/lipid ratio adjusted to prevent my blood sugar from bottoming out. After the first infusion, my blood glucose had dropped down into the upper 20’s, but no problems since adjustment on that front.
Saturday: I had been starting dialysis around 3am every morning since my admission. Finding out that my GFR went from 24 to 5 was a blow. After dialysis, I had intended to take a nap. Instead, I went and had a fucking seizure. I didn’t know until the nurse/doctor told me after the fact while they were hovering over me. They asked me a bunch of stupid questions like, “do you know where you are? What’s your name?” Hell. I’m in hell. My name is Inigo Montoya, you killed my father. Prepare to die.
The seizure thing, aaah. I had a few seizures last spring but hadn’t had any since, at least not that I noticed, so I figured I ‘got over it’. My worthless neuro decided that neurontin was good enough, even though my EEG indicated recent seizure activity. Neurontin isn’t exactly the best option.
I started lamotrigine after NOT worthless neuro came to see me. A couple of hours later, I was asked to get out of bed so the linens could be changed, and that’s when I realized that my right leg was NOT working. My legs are already completely numb and a little weak from the neuropathy, but my right leg had gone out to pasture. I had two CNA’s helping me out of bed, thankfully. Neuro got called right back in and he said weakness/paralysis can sometimes happen. It’s called postictal paralysis and it usually resolves within a couple of days. At least it was just the one leg!
Saturday evening I was feeling like straight up dookie. Mostly because I was stuck in my head on top of all of the other shit. Being stuck in the ICU for five days is terrible. I took my nasal oxygen cannula off so I could blow my nose, and the monitor alarm started chiming LOUDLY. What an asshole. My o2 on room air had gone down to 82%. That’s not good…
The nurse paged the doctor, she listened to my heart and lungs, then ordered another echo and chest x-ray to be done in the AM. My LVEF was now just shy of 20% and the edema in my lungs had gotten worse. They had already cycled through all of the ways to medically treat the heart failure and the only thing that didn’t make matters worse, I was already on. I’m now on slow continuous ultrafiltration to help draw some of the extra fluid out of my body/lungs. For now, it’s a waiting game. I’ll have a repeat echo on Tuesday.
Sunday: I got my hair washed for the first time in DAYS! Oh my god, it felt so good. My fever had finally begun to reduce, after four days on cipro and flagyl. Bitches stole my PCA after I had my abdominal drainage tube removed, on the day my pain seemed to be the worst. I entertained my parents and MC for most of the day and bawled my eyes out when I read the news. I need to stop doing that. Geeeeeaaawd. P.S. taking pictures of a patient while in the hospital (particularly in the ICU) or at a doctor’s visit is a HIPAA violation. That’s okay. I got her back.
Monday: I’m feeling a smidgen better today, I think. That could be because we got my administered pain meds on a reasonable schedule. qid instead of tid. AND I finally got orders to move to a step-down/regular room with an actual door and a bathroom. My morning labs indicated that my liver has taken a hit. It’s not a surprise. On top of all of the drugs, TPN is hard on the liver.
Wednesday I’ll have a NJ tube put in. I had an NG tube in for a few days to keep the gas and acids from building up in my stomach, and placement is simple for one of those. An NJ tube has to be inserted under fluoroscopy, so I get another giant dose of radiation. My central line for TPN will remain in place for the time being in case I have to do a combo of PPN/NJ feedings. I’m so depleted, it’s going to take a while to get things back to ‘normal’. Especially since I’m recovering from both surgery and a massive infection. That’s energy intensive. At some point, I’ll get a giant collection of supplies and patient education so I can continue tube feedings at home after discharge. How long I’ll have the tube is entirely dependent on my stomach. Gastroparesis isn’t doing me any favors. I am allowed to eat normal food as tolerated and if I get to a point that I’m not getting sick after eating, the tube can come out. I have about 25 pounds to gain and maintain before we can think about that.
I’m being encouraged to get up an walk around as often as I can tolerate, but I have to have a chaperone because I’m a fall risk. What a bunch of BS. With more activity comes more pain. It’s amazing how much we use our abdominal muscles without thinking about it, until they get cut on. Then it’s obvious. Sneezing, laughing, coughing, leaning over…everything. It hurts.
Mom brought my massive yarn/knitting tote, my laptop, and a bag of lounge clothes and personal care items, to include fragrance spray. My nose is a little too sensitive and I’m a little too stinky. From here on out, it shouldn’t be quite as awful. After all, Diablo 3 is known to cure everything.
One week down, weeks to go.
Side note: I can only assume that the leaky guts have been around for a LONG time, because the pain certainly has been. It’s not just me. All of the doctors I’ve spoken with over the past week believe this has been going on for months. I don’t even mention my abdominal pain anymore at appointments because one of two things will happen. 1) “You’ve got Crohn’s, right? That’s probably why you’re ‘sore'” or 2) “Some of my patients have it way worse than you, you should try Yoga or meditation.” (which is to say, stop being such a fucking wimp – your pain can’t be THAT bad). If enough people tell you your pain isn’t real or justified, you may begin to believe that you are, in fact, a wimp and the pain isn’t something that requires attention.
Pain medication is ineffective. If I could switch to Whiskey, I’d be set. And the band played on…