Still Too Broken to Fix

Written by Natalie Luhrs

I'm a lifelong geek with a passion for books and social justice.
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October 21, 2020

This is going to be a boring-ass health update. Things are annoying and frustrating, but not acute.

I spent a week in the hospital a few weeks back; I woke up in the wee hours of a Monday morning shaking so much that I could barely talk and after I threw up the three swallows of Crystal Light (don’t @ me) that I tried, we toddled off to the ER.

Turned out that I had bacteremia–a bacterial infection in my blood. In my case, it was E. coli. The infectious disease doctors think it came from my pancreas or gallbladder, but my GI doctor isn’t convinced, so I am getting a colonoscopy and an EDG next month to rule out my stomach and colon. I am so excited by this, you have no idea.

I also had an acute kidney injury from the diuretics, so they took me off them for the week and I had 7 liters of fluid drained early in the week. By the time I was discharged on Friday, I had already started accumulating fluid again. So that was great.

I was also getting IV antibiotics everyday and periodic infusions of albumin, including the largest bottle of it I’ve ever seen (I normally get tiny packets of the stuff):

While all this was going on, I was also having to listen to my poor roommate deal with a terminal diagnosis–essentially, cancer throughout her body and inoperable because of her other health conditions. She was really clear about not wanting treatment just for the sake of treatment and instead wanting to be sure that any treatment would improve her quality of life, but it was really difficult listening to it all. Obviously, not nearly as difficult as the diagnosis and the processing of the diagnosis was for her.

This roommate, nonetheless, was a huge improvement over the last two women I had to share a hospital room with, both of whom were getting way more painkillers than I ever get when I’m inpatient and needing pain control–I have to fight to get 1mg of IV Dilaudid and one of these women was getting 8mg of IV Dilaudid every 4 hours and how she wasn’t a dopey sleepy mess I do not know.

So anyhow, the hospital stay was really, really, really boring. Which is good, I guess, but there was also a lack of information which lead to me having a complete emotional breakdown over breakfast one morning when I discovered I’d been put on a low sodium diet in addition to the carb “control” diet

(control in scare quotes because you want to know how hospitals manage insulin-dependent diabetics? They load them up on carbs, check their blood sugar right before their next meal, and give them insulin based on that number with nothing to cover the carbs you’re about to eat–this is basically a terrible, terrible, terrible way to manage insulin-dependent diabetes)

and I hadn’t been told and breakfast was plain scrambled eggs and cream of wheat instead of a breakfast sandwich with a side of bacon and cream of wheat. The low sodium plus carb control diet really limits the choices you get on the menu, so I was stuck eating refined carbs and boring breakfast for the rest of the week. The hospitalist who was on my case–a very nice young woman–apologized for the missed communication and told me that she’d considered the low residue diet as well and thank GOD she didn’t because I’d’ve been eating nothing but cream of wheat and, uh, white bread. And maybe mashed potatoes.

In terms of my day to day diet, I am supposed to be eating: low fat, low sodium, low carb, and low residue. Some of these things are in direct conflict with each other and I’m trying to watch my salt and carbs, but it’s hard. The only thing that’s “safe” for me to eat is lean meat.

I was supposed to be discharged on the Thursday that week, but because it took infectious diseases so long to determine that I would need a longer course of IV antibiotics, not everything could be arranged that day and I wasn’t discharged until Friday.

So what needed to be arranged? A PICC line, home delivery of medical supplies (including antibiotics), and a home nurse to change the PICC line dressing and pull blood for labs weekly.

I agreed to let the PICC team put the line in, with some serious reservations that I expressed right up front. Specifically, I wanted anti-anxiety medication right before the procedure because the last time I had anything done with a PICC line, it was traumatic.

In the sense that I’d been told I’d be sedated with Versed for the procedure and…I wasn’t. And I wasn’t given anything like lidocaine, either, to numb me up and I had to lie very still on a very cold table all by myself while two doctors changed out the lumens on my PICC and chatted with each other as if they were working on a piece of meat, not a person.

It turned out that the floor nurses weren’t comfortable giving me anti-anxiety medication because my blood pressure was hilariously low (as it so often is these days), so the PICC nurses came in to talk to me about the procedure in detail and what I could expect.

They were wonderful. They explained the entire procedure from beginning to end and then during it they told me exactly what they were doing and when they were doing it, when I could expect to feel a bit of pain or pressure, and they listened to me babble about random things. And they found what they called a “beautiful” vein and I told them I was going to make a note of that because usually my veins are garbage (I’d been through three IVs by that point) and for the whole time I had the PICC line in, it behaved beautifully. Unlike the last two I’d had, which were constantly getting clogged (hence the traumatic lumens replacement).

What does a PICC line look like? I’m glad you asked, because I took a picture!

No big deal, just a tube from the outside of my body to my superior vena cava, no big deal at all.

And the antibiotics. There’s nothing quite like attaching a giant syringe of medication to a tube that goes inside your body and slowly pushing it in over the course of 20 minutes or so–here’s what every morning started with for the week and a half after I was discharged:

You will note, there was no caffeine included. Truly a missed opportunity.

I was done with the IV antibiotics last Tuesday. And I had a telemedicine visit with my GI doctor on Wednesday–and I told him I’d reaccumulated all the fluid that had been drained from me two weeks previously and he was able to get me in for a paracentesis last Thursday. 6 liters drained and two wee packets of albumin infused in the morning and then it was back home and back to work in the afternoon.

(Work, oh. Work has been really challenging–in some good ways but also in some bad ways–lately.)

This past Monday, I had an appointment with my hepatologist at Jefferson. He’s been having me come in for these appointments, so it means an entire morning off work, an hour’s drive each way, and ruinously expensive parking in between. I told him how frustrated I was with everything and basically he explained to me in itty bitty words that the head of transplant surgery at the hospital had reviewed my scans and that he tended to be an aggressive surgeon, and that he didn’t see a surgical option for me until/unless we can get the fluid under control so I’m going to be in a holding pattern for the next six months or so (that’s when I have another follow up with him).

So: still too broken to fix.

My diuretics have been increased to truly alarming levels, at least until my kidneys start to scream about the abuse (and they probably are screaming) at which point they’ll be decreased again. But right now, they’re definitely helping the fluid stay off and I’m enjoying the fact that all the new pairs of jeans I bought for this fall fit me again.

There was cytology done on the fluid drained last week and there was higher than expected levels of lipase, amylase, and triglycerides in it, which means my pancreas may be acting up again. My GI doctor thinks I may need another ERCP and he’d like my pancreatobiliary specialist at Jefferson to do it–the fluid collection had gotten significantly smaller between February and August, but between August and late September, it had gotten larger.

I don’t know. I’m really frustrated with everything. With my body, with the lack of research into my various conditions, with the medical holding pattern I find myself in, with various aspects of my job, and with trying to stay on top of everything.

I have an appointment with my hematologist tomorrow about my anemia (which looks like it’s improved over the last two weeks) and a trip to Labcorp to have blood cultures done to ensure that my blood is no longer growing its own colony of E. coli and a metabolic panel to check on my kidneys. Then a lot of meetings for work through the rest of the week.

Next week, I have an appointment with endocrinology where I am going to ask them to please get me set up for an insulin pump because in the month leading up to my hospitalization, my blood sugar was incredibly difficult to control (which was actually the first sign that there was something going on–so next time I have several weeks like that I’m going to push endocrinology harder than I did this time around) and I’d like to just get really good control so I can stop with the hypervigilance on that front already.

In general, I have pretty good control–my estimated A1C is around 6.6–but that doesn’t really show the whole picture. I have a lot of swings between highs and lows–this is typical of pancreatogenic diabetes–and having a constant basal rate with boluses for meals would just be helpful. And if you have a pump and you’re hospitalized, you sign a release and then you’re allowed to manage your own damn blood sugar so maybe you don’t have to have a perpetually high blood sugar because they aren’t giving you enough insulin with your meals.

I would like to be able to lessen the cognitive load around the diabetes so I can work on other aspects of my health (haha health what is that) and I don’t see why I should have to be “more” diabetic than I am right now in order to get a device which will make that aspect of things easier (fwiw, this is the pump I want–it has a hybrid closed loop system when used with the Dexcom G6 and that would really be helpful).

In the meantime, I am planning a day trip down to Cape Henlopen on Saturday–assuming we have good weather–so I can see my favorite ocean and try to reacquire some chill because I am completely and thoroughly out of it right now.

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