The scariest day of my life and what followed...
On 10/11, I went to bed with a weird pain in my lower back/abdomen that I assumed was gas from dinner, even though it was worse than any other gas I'd ever felt. Looking back at it now, I think I was trying to downplay it because I really didn't want to miss work the next day. I was up and down most of the night trying to get rid of the pain so I could start my new placement at work the next morning, but by about 4 AM I was sweating and shaking because it was so bad and I was forced to call in to work cos there was no way I could get there or work safely in my current state. My alarm wasn’t supposed to go off until 4:30 and I was up before it and I remember walking out of my bathroom and toward the bed as it was going off to try to avoid waking hubby up with it. The next thing I remember was sitting on the corner of my bed with his hands on my shoulders and tears in his eyes. My head and my shoulder hurt on the left side, which ended up being because I had hit that side pretty hard. He told me he looked up to turn my alarm off for me and as I got to the bed and before I could sit down, I collapsed and landed between our headboard and his desk, landing on a metal bar at the base of the desk. I remember bits and pieces of trying to sit up and put a shirt on so he could take me to the hospital he works at on his way in to work, he told me I would get the shirt over my head and then collapse again. I apparently finally told him at one point to call 911 but I don’t remember it at all. The next thing I knew, I was looking up at one of the crews from my work and a few firefighters while they were hooking me up to the monitoring device and Kit was putting a shirt on me. My blood pressure was dangerously low and everything around me sounded like it was in a fishbowl while the crew carried me down the stairs, it was around 11:30 at this point from what I remember. To this day, I’m still so grateful it was one of our crews that came to my aide and made me feel safe.
I’ve been getting bits and pieces back from the event and from when I was in the ED, mostly remembering I was in so much pain they had to give me Dilaudid (do not recommend, I hated it and came down so hard I thought my head would explode along with wanting it to so I could get some damned relief) so they could get a CT and feeling like I couldn’t catch my breath even though my oxygen was holding in the high 90’s-100%. They decided to admit me after finding out my abdomen was full of fluid and it was collapsing my lungs so they could run more tests. My blood pressure was still sitting dangerously low and that made them nervous enough in itself.
From there, I had a Paracentesis. If you’re not familiar with it, they stick an ultrasound-guided needle into a pocket clear of your organs and use it to drain fluid from your abdomen. 800ccs of blood and fluid later, I could finally take a deep breath without feeling like my lungs were being squeezed and burned and they wheeled me to my room in the CCU to wait for the MRI. While I waited, I saw 3 different doctors all trying to figure out what was going on but no one had any answers. It was so early in the process that I understood wholly and would have honestly been shocked if they’d had one already. After the MRI, they pumped me full of more meds, ran a new IV since the other had stopped working, and I settled in for the night. I spent the next 3 days talking with different specialists telling me what they thought it might be until one of them told me my right ovary had ruptured but they didn’t understand why. All I knew for sure was that I was having a helluva time trying to survive how awful I felt between the pain, sleeplessness brought on by my anxiety, blood pressure that wouldn’t hold high enough for safety, and continued internal bleeding that was making me feel like this was going to be it.
On the last day I was there, I finally got approved for the blood transfusion I was told I needed 2 days beforehand. I won’t go into the details on the problems I dealt with that finally go that pushed, just that I’m grateful my team removed the physician that caused the delay in my care after I spoke up for myself. I didn’t feel like I was ready to go home but insurance told the hospital otherwise and I was discharged with an appt to meet with my OBGYN a few days later. At this point, I was told by the one specialist I felt like I got the most information from that I would need surgical intervention within 2 weeks to avoid life-threatening consequences going forward and it was time for a hysterectomy. I wasn’t upset about hearing this, I had been trying to get one for the past few years due to my crippling Endometriosis and ovarian cysts that tend to clutter my ovaries in large numbers and have a habit of growing considerably large. My tubes were tied when LJ was a baby so there was no loss of childbearing for me to have to mourn, I gladly tied them after I was told that another delivery would be dangerous for me. It was honestly a bit of a relief that for once my age didn’t give them an excuse to dismiss every other issue that qualified me for the procedure.
I was put on 650mg of iron a day by my doc the following week and was told once again that I needed surgical intervention quickly and I was given a light-duty release to go back to work, which my boss happily obliged even though it didn’t last long that I was able to manage it due to appts, discomfort, and my situation changing quickly due to testing showing there were concerning changes that had happened since I was discharged.
Insurance took their time continuously insisting the surgery was elective because I was allowed to leave the hospital, even though it was them pushing my discharge in the first place because I survived the bleed, and I was finally able to have surgery 12/3 after an ultrasound showing a large mass around my right ovary and an elevated CA125 that made them suspect cancer pushed me to the specialist I had bonded with in the hospital who had, in all of this, refused to see me but now had to since it was beyond what my OBGYN could manage on his own. By this point, I was incredibly frustrated and found out my surgery that was supposed to be done by the beginning of November had been canceled. I met with the specialist, she handles blood complications and obstetric oncology, and lucked out that her scheduler had reserved a spot for me on 12/9 after seeing my chart and how long this had been going on. Doc put me on antibiotics because there was an infection in my uterus that she couldn’t place where it started, and I was put in quarantine to make sure I didn’t get sick prior to surgery.
At this point, I had already been sitting on the call I had gotten telling me the suspected the mass was a tumor and I had barely slept in several weeks. My nerves were shot, to say the least, but I continued to keep to myself to avoid worrying anyone with information I didn’t have any solid answers about; There was no point in worrying everyone when I couldn’t give them any answers, and hubby and I needed time to wrap our heads around this possibility and the fact that this had been drug out so long as it was.
The surgery went smoothly from what I was told and I habitually took a bit longer to wake up than she would have cared for but since I knew that was how I come out of anesthesia, I was able to prepare them for it ahead of time. I was told that everything except my left ovary was removed and the left ovary had a large cluster of cysts along with one large one about the size of a Cutie orange that she removed and it was sutured to my abdominal wall so we can use it for hormones until it stops functioning. The goal with treatment is to have to intervene as little as possible so they’re hoping to manage my hormones with birth control but will see how I respond to it to see if more is needed. The mass and everything else was sent to Pathology and I would hear back from them in approximately 2 weeks to confirm or deny her suspicions but she felt good about it based on how it looked. She cut the mass open before sending it out and found the ovary was completely necrotic and is likely where my infection came from, which only frustrated me as she apologized for underplaying the issue as long as she did and letting it get as bad as it did. I was just glad it was all out of me and left it at that, I didn’t have the energy to argue about it with anyone and just wanted to go back to sleep. I had enough of a battle ahead of me waiting to find out if I was facing a life-changing diagnosis that honestly scared the shit out of me.
My post-op with her is on Thursday and pathology has come back with the mass, who was amusingly named Chad to help me find some humor in the process, which was thankfully benign. I’ll ideally get a full duty release for mid-January for work, which could not come soon enough as I’m losing my mind being out of work for so long! I’m feeling alright other than my hormones not being able to regulate themselves making me feel like I’m going through morning sickness all over again and I’m still considerably sore, but my OBGYN will get me settled on all of the interventions to fix those issues in plenty of time to be alright for work by early February at the latest. I’m just so grateful it’s over with and I can move forward from what has been the scariest and most stressful things I’ve ever gone through.
To the handful of you that were aware of what was going on, thank you from the bottom of my heart for your support and discretion. Being able to keep this quiet while I dealt with all of it along with having you cheering in my corner has meant more than I can ever tell or show you. To anyone that I didn’t tell, it was nothing against you. I just needed to work through this in my own way and needed this to stay as quiet as possible while I did it to preserve my own sanity and emotions through it all <3
