As If Things Couldn't Get Worse
Meaning, that is, I almost bled to death the week before last.
Things stabilized a bit after the Mirena was in place and I was on 20mg of Provera every day, but it didn’t last.
I was able to go to Capclave, which was wonderful. Got to see friends and opine on panels and did I mention that I got to see friends? Friends are the best
And then my Provera prescription ran out and things got a little messy. On Monday, October 10, I called my gynecologist’s office to let her know that the bleeding had gotten heavier. She sent in a prescription for 10mg of Provera a day, and after calling my insurance company to sort out Caremark thinking they were gonna fill it, I was about to pick it up that afternoon from my local pharmacy.
Then Wednesday, October 12, happened. It started around noon.
And by it, I mean the hemorrhage. And the clots. Oh, the clots. It is amazing–and disgusting–how many clots and of what size the human uterus is able to create and expel.
I called the gynecologist’s office and was told to go to the OB/GYN Triage in the Women & Children Building at Christiana Hospital.
This is the Fancy-Ass Building I watched being built 4 years ago that is basically just one giant maternity ward and since giving birth is the one time a person gets to choose where they get to go, hospitals invest a ton of capital in these facilities. Capital which should also be invested in the “regular” ER facilities, especially when this particular hospital is the trauma center for the state. (But you don’t get the same ROI on dead gunshot victims as you do on parents and babies.)
But I digress.
Paul dropped me off at the entrance and I made my way in. By the time he made it inside, I was already checked in and it was just a few minutes until I was called back to an exam room. And I immediately had to us the bathroom and how incredible–all the exam and treatment rooms have their own bathrooms–but at the same time, I made a bit of a mess in the bathroom. As I told the techs, I left them a tissue sample on the floor for them. They left it there for the doctor to look at.
They had me take off everything (even my non-metallic bra, boo) and put on a gown and told me that it would be find for me to bleed on the stretcher, as there were a few underpads in place, and off I went to imaging for an ultrasound to see if the Mirena (remember that Mirena?) was still there.
It looked like it was–very low in the uterus–and then I passed 5 or 6 more enormous clots and while no one went looking, no one was thinking that it was still where it was supposed to me…
By this time, the attending physician had made her way to me, and she was with the Gynecology Faculty Practice, the same practice that I’d been to in 2016 when I was dealing with pre-cancerous cells in my uterus. This is where I got lucky.
Dr. I had a good understanding of my prior history and the need to keep my uterine lining under control and she also understood that we couldn’t simply go to hysterectomy, do not pass go and do not collect $200. But she knew of another procedure and she was on the phone with the department setting it up before she even spoke with me.
She suggested what’s called a uterine artery embolization. It’s normally used to treat fibroids or postpartum hemorrhage and it’s done by the Vascular Interventional Radiology doctors–all of whom I know and have good relationships with at Christiana. I was put on the list for the next day as an add-on, which means late afternoon and it may not happen.
One of the VIR residents came by to talk to me and I asked about anesthesia and pain management and he told me that it’s normally done with an epidural but that since I couldn’t have one, it would be moderate anesthesia–at which point I interjected to tell him that I had to be fully knocked out because if I were aware at all, there was a good chance I’d freak out on the table. I also mentioned that I needed significant pain management, since I’d had inadequate pain management while my pancreas was dying. He said he’d see about full anesthesia and a PCA for pain management.
Dr. I also increased my Provera dosage to 20mg three times a day, which is the maximum dose. This slowed the bleeding from me needing 2 postpartum pads (and mesh underwear!) to my own underwear and a single postpartum pad (look, they were there, I was gonna use them).
By this point, I’d been transferred to an exam room with an actual bed in it and that was my home for Thursday into Friday. The nurses on Thursday were super nice, but the Friday morning one–she was very much looking forward to kicking me over to another part of the hospital, because she made sure that I knew that I needed to have all my shit packed to go to HVIS (the other really nice part of the hospital) and when I asked her for an extra bag, my God, you’d have thought I was asking for a fancy piece of luggage and not a plastic bag that Miles would eat as soon as it came into the house.
So I’m getting prepped for surgery and the anesthesiologist, a lovely young Black man, came by and assured me that he’d make sure I was “knocked the fuck out” for the procedure. And he did. I don’t even remember the mask going on my face–the last thing I remember is them getting my arms settled by my sides.
And then I woke up with what felt like the worst menstrual cramps in the world and the Dilaudid PCA wasn’t doing anything to touch it until two things happened: the nurse called OB/GYN about it and they authorized setting a basal rate of 3mg/hour in addition to the 1mg/hour I’d be able to administer myself with the button (in 15 minute increments) and then after I finally got to a room, the floor nurse realized that the recovery nurse hadn’t hung any saline to help the Dilaudid along and fixed that.
I spent the next day and a half gloriously high. I was mashing that button like a rat in a cage with a heroin button.
And I realized that this is what my pain management should have been like four years ago. I shouldn’t have had nurses telling me that I couldn’t use the PCA if I wanted to go home–and I was only getting 1mg/hour via the button, without a basal dose at all. No wonder I was in so much pain and boy, I have a lot of anger about that now. But while I was in my drug-fueled haze, I understood completely why people will choose to take heroin or meth or other drugs in order to escape the pain of their lives, be it mental or physical.
It was during this time that another of the VIR residents came by to see how I was doing and we asked him for a detailed explanation of the surgery, which he obliged us with. And then–then–I told him I would love to see the pictures and he went and found a computer and showed me the embolization happening and it was the best. I need to write a letter to both these residents’ attending to let him know that they really took good care of me (the attending did the actual surgery part).
And the way they weaned me from the PCA? They unplugged me Sunday midday, gave me 4mg of Dilaudid orally, and then sent me home with a prescription for 20 oxycodone pills and told me to stop taking Percocet–nah, I don’t think so, bruh. They also gave me a prescription for 360 10mg Provera tablets so I could continue at 60 mg and then taper down to a more reasonable 20mg/day until I was able to get another Mirena.
So home on Sunday and plans to take Monday and Tuesday off to recover and then hopefully back to work a little bit for the rest of the week–we work in rough 13 week cycles, so this last week was a rest week. My plan was to read Debugging Teams, answer tech support email, and work on a content prebuild.
What happened is that I had visitors on Monday, a paracentesis first thing Tuesday morning, then labs which showed my hemoglobin at 7.6 (7.0 is the transfusion threshold) and I had an appointment with my gynecologist who basically went over birth control options with me. Due to my age and the embolization, pregnancy isn’t likely, but I would not be able to carry to term and attempting to do so would kill me, so we decided that the Mirena really would be the best choice (I can’t have anything with estrogen). And the best part is that the manufacturer will replace it for me since it got yeeted out.
Wednesday, I called my hematologist’s office about my low hemoglobin and the nurse asked me if I’d had a lot of bleeding recently. They apparently hadn’t gotten the records, so I called the nurses at my gynecologist’s office and asked that they send them over for review. I was pissed, not gonna lie.
Thursday was my 6-month follow-up with my endocrinologist, and I had a good visit with her. She agreed that with everything else I have going on, I can de-prioritize losing weight at the moment. (Ironically, I’ve lost over 20 pounds since almost bleeding out–a lot of that was fluid, I had almost 7L drained in two paracentesis in a 5 day period.)
My A1C is excellent and I’m in-range 92% of the time. I am basically killing this diabetes thing. Mainly because I’ve seen what happens with poorly controlled diabetes.
I was managing some work these two days–some automated email tasks and reading Debugging Teams–but there were so many naps. I had some of the worst brain fog I ever had in my life.
Thursday afternoon, hematology called me back with the dates available for my Injectafer infusions, which have to happen a week apart and which are disturbingly orange in color. They also have a black box notification around blood pressure so you have to sit around for half an hour and get your blood pressure taken before you can leave.
Of course, the only time they had was Friday at 9 am, which meant I had to reschedule therapy–which I really needed!–to tomorrow morning.
Which turned out to be a good thing. Because the nurses at the infusion center were really concerned with my hemoglobin and that I hadn’t been scheduled any transfusions and that due to logistics, they wouldn’t be able to get to me until Monday.
So they urged me, with some force, to take myself to the ER. Which I did. And I got triaged pretty quickly and my blood pressure was something like 90/37 and my hemoglobin was down to 7.2. It took a while, but I ended up getting two units of blood and then they let me come home.
I still had a lot of brain fog yesterday, but it cleared up by the evening and today’s been mostly fine–I’m a little foggy right now because I’ve spent the last two hours writing this after spending a good chunk of the afternoon setting up the shiny new laptop I bought myself to celebrate not dying (again) (also, I’d been budgeting for it). My previous laptop was a tiny bit underpowered for doing work on it and this one won’t be.
And weirdly enough, reading my way through the second half of Victoria Goddard’s Black Currant Fool (number 4 in her Greenwing and Dart series) really helped. Really, really helped my mental state.
So my plan for this week is to continue not dying, to follow up with all my doctors, do some work on this site (thinking about switching to 11ty from Hugo or some design tweaking in the font area), and actually get some work done. Even if it’s from the couch with comfy pants on (I normally try to dress somewhat reasonably for work). I have refactoring to do! And that content prebuild! And maybe another chapter in Debugging Teams.
Oh, and get my goddamn hematologist to do what he should have done back in August: get me a prior authorization for my previous blood thinner, since the root cause of the entire almost bleeding to death thing was Xarelto. Which I was forced to change to for insurance reasons and not medically therapeutic ones. And I am Big Mad about this on a lot of fronts.