How lucky I am to be alive right now

Four months ago, I collapsed at work.

Here’s the short version:

I had gallstone pancreatitis which turned into necrotizing pancreatitis and I spent the better part of three months in the hospital. I was on a lot of painkillers, particularly at the beginning and the first month is mostly a blur. I’ve been home for a month and I started back to work last week and I’ll be able to drive tomorrow, so things are getting back to normal.

Or as normal as they’re going to be, I have dietary restrictions and a lot of medications, and lots of exciting new things to talk about with my therapist.

I’m also grateful to be alive and grateful for all my wonderful friends.

For those of you who scrolled down or clicked through, be aware that there are going to be some graphic medical details and details of mistreatment by medical professionals.

Just before I collapsed, I was able to locate a colleague who happened to be in the office on a Friday afternoon in the summer (rare as hens’ teeth, that) and ask him to call site medical for me. He did that and he called my husband to let him know that I was seriously ill and he sat with me until the actual paramedics showed up. (Site medical was useless; all they did was call 911. According to my colleague, they didn’t even take my vitals.)

My collapse wasn’t a dramatic fall to the floor, it was more like I sat in my desk chair and prostrated myself on my desk while I tried very hard to not scream from the pain. There was a lot of sweat, too. The last thing I remember is being loaded onto the stretcher for the ambulance.

I woke up in the ICU three days later.

I wasn’t allowed to eat or drink anything for the next few days and the inside of my mouth felt like raw hamburger. I was later able to determine that one of my medications was causing severe dry mouth and eventually got it changed to something that I didn’t have such a reaction too–it took weeks of consistent refusal to take the medication to get it changed, though.

Eventually, I was moved to a ward that was…less intense than the ICU and was allowed to have clear liquids, which includes Jell-O and sherbet. After almost three weeks, I was discharged.

The problem there was that they’d pumped me so full of IV fluids that I’d gained 50 pounds. My toes looked like sausages and I could barely walk. I’d asked about something to help with this fluid accumulation and I was told, by actual doctors, that it would “come off on its own.”

Guess what? It didn’t and I ended up going back into the hospital just under two weeks later when bloodwork showed that my kidneys were failing–likely from a combination of the ibuprofen I was taking for the pain and the fluid in my abdomen crushing the arteries leading to my kidneys.

Interventional radiology did a paracentesis and suctioned 10L of fluid out of my abdomen; as soon as they started the suction and fluid started moving out, I felt relief. By the time of my final discharge, I’d had 24L of fluid suctioned out of me.

This was the point in my illness that my pancreatitis shifted from gallstone to necrotizing.

Necrotizing pancreatitis is a very severe but relatively rare complication and it does what it says on the tin: your pancreas starts to die. You can die from it, too. I could have died from this. (Spoiler: I didn’t.)

It was around this time that I was put into what’s called a step up unit, which is one step up from the ICU. It’s a higher level of care than what you’d get in a more general unit, but not as much as you’d get in the ICU. The higher the level of care, the fewer patients each nurse has–this will be important to keep in mind for the next few paragraphs.

I think I lasted all of two days in this particular unit. the first day was fine, I had an awesome nurse who helped me to the bathroom when I needed to go (approximately hourly and I wasn’t allowed to get out of bed by myself) and made sure I was taken care of. When she went off shift, the nurse who replaced her for the night was not nearly so awesome. She got tired of helping me to the bathroom hourly and decided she’d come in every hour and put me on a bedpan. The next day’s was even worse. They told me that they couldn’t let me out of bed because I couldn’t get back in unassisted (see: still pretty swollen with fluid) and that I was asking to go to the bathroom too often.

Things deteriorated throughout the day and into the evening (I ended up doing a lot of yelling in the middle of the night and I wasn’t very nice to my poor husband, either) and the upshot is that I ended up in a hospital recliner with monitor wires wrapped around me in such a way that I wasn’t able to move and the call button well out of reach. I’d also been forced to urinate on myself the previous evening because they refused to take me to the bathroom and when I told them that they were engaging in abusive behavior, they told me that it was not abuse.

The thing is that my phone was within reach. So I called 911. Which the nurses found out about and yelled at me for doing, even though I was unable to move, unable to use the call button, and was being obviously ignored by all the nurses and patient care techs. At some point a doctor came by to see me and I demanded to be moved to a different unit, which eventually happened.

Now. This unit may not have been as bad as I’m depicting it. I’ve been told that I wasn’t particularly coherent during the early phases of my pancreas eating itself, but it goes without saying that I didn’t get on with the nurses assigned to this particular unit and it was a good thing that I was moved.

My pancreas continued to deteriorate and my medical team was very into just letting my pancreas rest (which is the course of treatment for pancreatitis, but as it turns out, I did better with a more interventionist approach).

They took me off all food and started me on TPN [link], essentially intravenous formula for adults and it is the worst because you’re attached to an IV pole for at least 14 hours and sometimes around the clock. I was in so much pain that I had a dilaudid PCA, although I was only able to press the button every 15 minutes and that was not nearly often enough. I was being sent for scans and tests almost constantly and my left hand looked like it had been attacked by a small angry animal due to all the blood draws and blood sugar tests I had every day.

I wasn’t able to read or write or knit because I had no focus, so I watched an endless amount of HGTV–to the point I have their entire schedule memorized. Still.

(This essay is, in fact, the most significant amount of writing I’ve done since early July.)

Eventually, I was discharged with TPN and IV antibiotics at home–I forgot to mention that I have antibiotic-resistance E. coli in my gut (this is not unusual) so was in isolation rooms for most of my admissions. This was hard, particularly on my husband who was having to prep the TPN and antibiotics every evening and morning. And make sure I was taking my meds and dealing with my whining. I was getting twice weekly visits from a nurse and visits from a physical therapist, but otherwise I was on my own during the day, which was challenging.

One of the things I had to watch for was significant weight gain between one day and another and that was the driving factor for my last two admissions to the hospital. I had four more paracenteses and two drains; I only got the last drain taken out just over two weeks ago and I’m still working on healing the open wound in my abdomen.

My diet was a mess–I was being allowed clear liquids at home, but in hospital I was only being allowed sips of water and sometimes not even that and no one could explain the discrepancy.

The last admission, we agreed that I would stay until the doctors decided to discharge me and that we’d try to get me discharged to rehab (which didn’t happen, I was too well by that point).

The third admission was when I acquired my wonderful gastroenterologist, who actually told me what was going on and who explained things to me, in stark contrast to my surgeon and her residents, who disappeared after my second admission (I suspect that my GI doc fired them from my case, since it took them an entire week to figure out that my pancreas was leaking–and necrotizing–during admission number two).

Dr. U did multiple endoscopies, the last two to remove the dead portion of my pancreas. He took a picture and later showed it to me (it was both gross and fascinating). I don’t have much pancreas left, but you only need about 10% to get through without being diabetic and, as I’ve discovered, you can take a digestive enzymes in handy capsule form. And just like the earliest forms of insulin used in humans, these digestive enzymes come from the pancreases of pigs. And are horrifyingly expensive without the benefit of insurance.

So, yeah. The last four months have been a lot. I have a lot to talk to my therapist about and eating is still not the easiest of things. I am working on increasing my strength so I can get my provocateur gallbladder removed next year with the surgeon Dr. U recommended.

I’m also quite enjoying being alive. Alive is good. I am so lucky.