Today marks the first day of Dysautonomia awareness month. So, I would like to take this opportunity to spread some awareness.
One year ago today, I went through one of the most traumatic events of my life.
Today, I'm going to share with you the details of that day. What I want people to get out of this is (1) an understanding of why it's important to advocate for yourself, (2) an understanding of the complications that can come along with Dysautonomia and POTS , and (3) bring awareness to this phenomenon.
On October 1st, 2019. I went under twilight anesthesia for an EP study and loop recorded placement to help facilitate my POTS/Dysautonomia treatment. An EP study is a procedure that involves running catheters to your heart to test the electrical signals and look for things like arrhythmias. A loop recorded is a heart monitor that is placed under the skin.
I got everything set up with the doctor and CRNA (Certified Registered Nurse Anesthetist) before being wheeled back to the OR. I was transferred to a freezing metal slab of a table, and given a bath blanket. My gown was removed.
After that they gave me my first dose of conscious sedation. They put 4 point restraints on me and uncovered the lower half of my body to prep catheter placement.
Here's where it all started. My doctor picked up a scalpel and cut into my leg. He then proceeded to run the catheter up to my heart. I felt it. Every millimeter it went, I felt it. All of it. I started to violently shake on the table. I could hear the doctor ask the nurses why I was so cold. I looked at my CRNA crying and kept saying I was scared over and over again. I couldn't scream. I could barely get words out. He pushed more conscious sedation. It didn't work.
I was faced toward a screen with my vitals and watched as my heart rate was forced up to almost 400bpms and then back down again. Over and over. All while I was crying for help. The CRNA looked at me and said "it's okay. You won't remember any of this anyway.". He continued to give me more conscious sedation. This went on for some time.
When they finished with the EP study they pulled the catheter out causing me to shake again and proceeded to place my loop recorder. At this point they fully exposed my chest and draped a blanket over my head. My doctor numbed my chest with lidocaine to prepare for placement. He took a scalpel and cut into my chest. Again, I felt it. I then felt as he forced the loop recorder under my skin. My CRNA lifted my blanket to look at my face occasionally. I pleaded with him to make it stop. I told him I was scared over and over again. He continued to push more conscious sedation. Then my doctor started to stitch me up. I could feel each one being placed.
Afterwards they wheeled me back to my family. I was hysterical. I tried to say what happened but I was in shock. To top it all off I experienced complications after the procedure.
I had severe bladder pain due to my IC (Interstitial Cystitis). Anesthesia causes my bladder to spasm and have a retention problem. So, they had to catheterize me before I could leave. It took me a long time to convince them to. They didn't believe I was having this problem or that I was in pain. I wasn’t being heard.
Then they wanted me to walk before I left, which is fine. I told them I was on my period and needed underwear or a pad. They said no it would be fine. They didn't understand that my Endometriosis causes me to have heavy bleeding and that I had been laying for hours so it was most likely pooling. I walked the hall gushing blood down my legs and crying. Again, I wasn’t being heard. I convinced the nurse to let me stop at the bathroom and cried on the toilet as I attempted to clean myself up. Then they finally let me go home.
On that day I posted that my surgery went fine. That everything was all good. I lied. I convinced myself it didn't happen. I tried to do that for a while but it didn't work. I started researching it and it turns out that other POTS/Dysautonomia patients have had experiences just like me. I also found many studies that showed a link to anesthesia complications in POTS patients. I was unaware of this, and if I had known I would never have agreed to twilight anesthesia. I remember every second of that surgery. My doctors have agreed I will no longer be allowed under twilight anesthesia and will be carefully monitored under general anesthesia.
I shared my story with you all to tell you that it is important to advocate for yourself. Those health care workers did not listen to me during or after surgery. Push for what you need. Do not let that happen to you, do your research, and most importantly, if you have POTS/Dysautonomia be aware of the surgical implications you could experience.
