I’m currently in my 18th hour of an ER visit. Hour 24 without food, and hour 30 without sleep. And the right side of my abdomen is currently being stabbed with a pitchfork every time I move or breathe, and every other time I blink. Actually, they gave me pain meds a bit ago again so it’s down from a 9/10 on the practically meaningless pain scale to a manageable (and my pretty standard operating condition level) 5. So I’ve got that going. I also have iv benadryl (and it feeeeellllsss soooo goooood!) and my safe steroids on board too. So if this is incoherent, we’ll blame it on that, m’kay?

Disclaimers 🙂

So first a couple of disclaimers before telling this story:

1) I know I’m incredibly blessed and privileged to have access to great health insurance and a world-class university hospital that is willing to recognize my many, weird diagnoses and treat me. So many with my conditions go without this and it’s absolutely heartbreaking.

2) I’ve had some rough ER visits that leave me worse off than when I walked in, so it makes me quite gun-shy about going into the ER. I’ve skipped going in because the stress of having to defend my needs sometimes outweighs what is potentially emergency room worthy. I’ve learned to (mostly) diplomatically advocate what I know my body needs and respect the doctor and their experience, and who are likely inexperienced with my constellation of conditions. It’s a tough needle to thread. Sometimes doctors don’t respond well to me defending what I need or trying to explain my prior experiences.

I’ve talked before about what getting my bingo card (my current favorite analogy) collection of unusual and rare conditions looks like. But other than those fun adventures, I haven’t had many other “normal” issues. If you ignore all my problems, I’m like *totally* healthy. Haaa. 

An ER Visit Personal Record is Broken

But yesterday, I had a normal person health problem that ended my 4.5-year no E.R. visit streak. (Can I get a round of applause for that streak?! It’s dang impressive for me!) Mid-afternoon I started having severe pain on the right side of my abdomen. It was low and it was terrible. I tried my usual bag of tricks thinking it was related to my usual suspects. But instead, I felt worse and continued to get worse. A consult was made with my local access, on-call nurse (thanks for picking up mom!) and I was advised to go to the ER. I bet you can guess what the concern is here. Lol. 

I went to my hospital at about 7:30 and it was PACKED. I was in so much pain I could barely shuffle to the check-in window. There were no wheelchairs (spoiler alert: none for hours). I checked in and shuffled down the hall to find a chair. Luckily, someone was called back right then so I hobbled at a glacial pace to the chair. Triage got me about 20 minutes later, took labs, and noted my symptoms. 

Tales from the Waiting Room

Over the hours, my pain was getting worse. There was a guy who came in a couple of hours after me and appeared to be in significant pain. His approach to getting quicker help was to gradually get louder and eventually got to yelling his discomfort and so he got wheeled back hours before I did. Sometimes suffering in silence is not helpful.

A hilarious interaction I saw was between two men in their 50-60s who were swapping stories. They were sitting next to each other and said they had both been waiting most of the day. They showed each other their left legs where they apparently had both received bug bites of some kind (they guessed spiders). Their budding bromance continued as they watched Jumanji on the waiting room tv together. It made me giggle. 

You know, there was something oddly comforting sitting there with other suffering people, knowing I wasn’t alone in my pain and frustration at the long wait.

(So about 7 hours after arrival) I was taken back to a bed and had a chance to finally meet with a doctor.

I just got called back for my CT scan (second attempt) so hopefully they’ll do it this time. I’ll finish writing this later. Please hold. 

A Long Story Gets Longer

Okay, I’m home from my ER visit. I was there for 23 hours, and awake for 38 hours (DO NOT RECOMMEND, lol, also might be a personal record?). Oh, man. But we know what happened and what happens from here. And my MCAS reactions were managed quite well. Overall, I’m happy with how it went. Definitely one of my better ER visits. So here’s the rest of the story. 

Around 3:30am, on a crazy busy night, I finally made it to a bed. I was utterly exhausted and nervous about how I would be treated by the doctor. Surely they were also having a tough night too. 

The CNA wheeled me back into a pretty private area. There was only one other bed in the bay and they were separated by a hard wall. Other bays were open and had 4-6 beds and were much more chaotic. So grateful for where they put me. It was quiet and they kept the light in my “room” off. I don’t like overhead lights. My night nurse, Melissa, came right in. She was wonderful. I explained what was going on and a bit of my prior medical history. While we were going through it the doctor came in. Dr. Tim. Never had an ER doctor introduce himself with just his first name. Haha. He was so great! 

We Make A Plan

I went through everything again and Dr. Tim said he thought I need an ultrasound and a CT. He thought I might have a torsion of my right ovary (where the intense pain was) or possibly appendicitis. He also noted that I had some pain up higher on the right side of my abdomen that seemed to be different than the lower right pain. Basically, all of my right side was painful. We discussed pain meds and my allergies to find one that would work for me. I don’t like narcotics and have had reactions to a few of them. We settled on Norco starting at the lowest dose and would work up if I needed it. Fortunately, 5mg of Norco every few hours was enough to cut my pain from 9/10 to a 5. I could handle that. 

Dr. Tim left to get the orders in for radiology. Melissa confirmed my triage labs didn’t indicate an infection, and that I wasn’t pregnant (oh good, my pains were not from labor! Whew! hahaha), but because of my primary immunodeficiency, we needed the CT with contrast to confirm. I hadn’t realized the CT was with contrast, so I immediately said that I was allergic to contrast. So now we had to make a plan for how to get the imaging we needed. Dr. Tim discovered the allergy at about the same time and came back a few minutes later to discuss it. 

We talked about my previous reaction. My previous premed protocol was 13 hours: oral dexamethasone (dex) and benadryl the night before and IV dex and benadryl the day of. But I reacted on that, so I needed a better pre-med protocol. And preferably one that was not 13 hours long. Dr. Tim thought we could get away with a 5-hour one if we did higher doses of meds. I’d have my ultrasound in the meantime. I didn’t know if 5 hours was enough, but I was willing to try. With a protocol like this, timing is super important so I needed to get meds at the right times and get the CT at a certain time when the meds are at their peaks. 

I got my IV with an ultrasound tech. It was so easy. The girl got it on the first shot. Yay! I prefer IVs in my hands, but CT with contrast requires it in the forearm or higher. But it’s usually difficult to get it anywhere else. Historically, it has taken up to 3-4 or more attempts, even in my “reliable” hands. I have lame veins that like to fight off the invading force of the IV. But this was a breeze. Ultrasound placement is the way to go!

Ultrasound Time!

Around 6:15am I went for my ultrasound. And I found out I needed an external and the dreaded internal ultrasound. I was not excited. Because the Ultrasound Tech was a guy, the EMT that wheeled me over stayed for the scan and the three of us had an interesting conversation about her decision to go to nursing school. Which was a good distraction from the internal ultrasound. The Tech was a bit of a jaded medical professional (definitely still professional, and honestly, I can’t blame him), but the sweet EMT was excited to be a nurse. I’m rooting for her and told her that I was grateful that there were still people who wanted to be nurses in a post-covid world. And as an EMT working in a hospital, she clearly knew what she was getting herself into. I see good things for her. 🙂

By the time my ultrasound was done, shift change had already happened. When I went back to my room, I met my new nurse, Lucas. He was good, just not as friendly as my previous nurse. I like to get on good terms with my nurses, but he was a nut that I wasn’t quite able to crack. He did his job but wasn’t interested in learning about my conditions or spending time talking. That’s totally fine. But I always appreciate it when I meet medical professionals who want to learn about them.

CT Drama

Four hours after I got my dex, I went to CT. I let them know about my prior history and they then pow-wowed about what to do. One of the techs was sooo kind. He could tell I was nervous and spent time with me making sure I knew they were taking my concerns seriously. I had been so cold in the waiting room and hadn’t had a blanket, unlike everyone else. So the tech went and brought me all the blankets and bundled me up. Hahaha. It was very sweet. I warmed up quite nicely in the chilly CT room.

The other tech and the radiologist came back and let me know I needed a longer premed protocol (I knew I would) and they were sending me back to my room. I didn’t want to be in the ER longer than I needed to be, but I knew I needed more meds before getting a CT with contrast. 

A New-ish Plan

I made it back to my room and finally met my day doctor, Dr. Megan. She was also so great! By the time she came in to see me, she’d talked to Radiology and looked at my chart. She had me recap what brought me in and my general MCAS history so she knew what she was dealing with.

She let me know that the ultrasound found a burst cyst on my ovary, but no torsion so I didn’t need emergency surgery on my ovary. What a relief! I also found out I have gallstones. That explained the pain in the upper right part of my abdomen. She said the ultrasound couldn’t quite tell if there was a current infection, and the CT would give us more information about my appendix and gallbladder. She wanted to check with Pharmacy and Radiology and come up with a good pre-med plan. 

A bit later she came back and let me know that they had found a new pre-med plan that was stronger and shorter–only 9 hours, and they wanted to go for it. She also said there will be a doctor in the room to make sure I got epinephrine if I do react. I was all for not being there for a shorter amount of time. And a liter of fluids after to help start flushing the contrast out of my body. I got my second shot of dex.  I felt good about the new plan.

CT Takes 2 and 3

About 2:30, an hour before my CT, I got my last dose of dex and benadryl. At 3:30pm, Radiology was gifted with my presence again. The swing shift had replaced the morning shift and missed the memo about my situation and high maintenance-ness, so almost immediately I went back to my room. If we couldn’t get this handled quickly, it was going to be another 4 hours (and another shift change) because of the medication timings. 

Fortunately, my doctor was able to work it out quickly and I went back to CT within 10 minutes. I had the same tech as the morning and she remembered me, so that was comforting. My nurse came with me and confirmed he would give me epi if I needed it, so that was also comforting. He also brought oxygen, which turned out to be a good thing.

The radiologist wasn’t super patient with me and didn’t really want to listen. He kept saying that I was pre-medicated so I won’t react. I couldn’t tell if he meant to reassure me or tell me I was wrong about my body. It came across as the latter. I told him I was premedicated last time and still reacted. It didn’t seem like he believed me. “I’ve never seen someone react when they’ve been pre-medicated.” I decided to respond with “Let’s hope your record remains unbroken,” instead of, “You’re about to see the first.” I was as prepped as I could be. 

And…I did react…but not as bad as the first time, and not as long. The supplemental oxygen helped me feel like I could catch my breath faster, so that was helpful too. I didn’t need any epi. So mostly a win. I mean, I survived, so really, it was a full win. 

An ER Visit Comes to an End

Back in my room, I started my fluids. My nurse said it would take a couple of hours to get the CT results. However, my results came back in like 45 minutes. (I think the radiologist just wanted to get rid of me, hahaha!)

Dr. Megan came in and let me know I had no appendicitis! I did not need any emergency surgeries! Woohoo! And I could have food and water again!! Best news of the day.

But she said I needed my gallbladder out because of my gallstones. They’ll only bring me trouble and will possibly cause an infection down the road, which would be very bad. The nice thing is I have time to plan this out and make arrangements for the surgery and save up for the time off. And I will have time to find a surgeon and anaesthesiology to make sure we all feel comfortable. Which is a huge relief. 

She also let me know that it looks like when my ovarian cyst burst, it messed up the placement of my IUD so I need to get that replaced ASAP so it doesn’t damage my uterus. I just replaced my IUD a couple of months ago. I’m not excited to go through that again. Ugh.

And as a nice bonus, it turns out my ER doctor is friends with my primary doctor. So Dr. Megan said she’d call her right away and catch her up. I’m very grateful. Conveniently I have an appointment with my primary doctor next week for something else, so we can also talk about my gallbladder, and make sure I’m still doing okay, Another small blessing in the timing of this. I also already have an appointment with a new gynecologist in a few weeks and I can hopefully get my new IUD then, which is also convenient. And as a parting gift, Dr. Megan said she documented the pre-med protocol in my chart so if I ever need a CT with contrast, we can use it again since it worked so well. So grateful!

An Almond Sized Cyst

Without my 3.4cm cyst, I would have never known about my gallbladder. So while quite painful, it saved me a potentially much bigger problem, and for that, I am very grateful. 

As soon as my fluids were finished, Lucas pulled my IV, and I was officially discharged! What a relief! I had to wait a bit for my pain medication prescription, so I went to the cafeteria for a light meal to ease my stomach back into food. It had been 28 hours since I had eaten. I can’t fast, so I was a bit nervous to eat. A lot of water, a bag of salty chips, and a bowl of honeydew later, I was feeling pretty good. I picked up my meds and busted out of the clink! My ER visit was over! After 23 hours, I was as FREEEE as Dobby (you know, before he bit the dust, poor Dobby)! 

Let me just tell you, after a long, cool shower, and sleeping 13 hours, I feel like a new woman. I still have some pain, but I can deal with it just fine.

A Good Doctor Makes All the Difference

I just want to end this by noting what a difference it makes to have medical providers who are open-minded and good listeners. It is really nice when they recognize patients who have complex and rare medical conditions are the experts in their own conditions. Both of my doctors specifically said, “You are the expert in your condition. So you tell me if ___ won’t work and let’s figure out a solution so you feel as safe as possible.” It was such a different experience this ER visit than even the last time I was in the same emergency room. I had a different doctor who never even told me her name and got frustrated that I couldn’t communicate well (because I was having anaphylaxis?!).

I know doctors are people too, and everyone has rough days at work, and ERs are especially stressful. But bad or even impatient doctors can be traumatizing to have in a crisis when you don’t have a choice about who you see. I don’t have family who live near me. So I’m always alone at appointments and in the hospital. That is stressful. However, good, compassionate, open-minded medical professionals make such a world of difference to the “professionally” sick (and really, all patients). And I am so, so grateful for them. Maybe, just maybe, I won’t be so nervous to head to the ER next time I might need to.

I’m so grateful I learned some new things (like some of my meds can cause significant side effects to my heart, which I didn’t know about so now I can stay on top of monitoring for it!). I got a new protocol in my toolbelt, and walked out better off than I hobbled in. 

So now my right side is looking sunny side up!