I struggled with low blood pressure my whole life. It wouldn’t have been so bad, but I also struggled with tachycardia (too rapid heart rate) my whole life as well. The two issues combined were a recipe for hypovolemic shock. When I went into hypovolemic shock, we called it bottoming out. It was one of the reasons I was admitted to the hospital so frequently.
“Any time you know you’re bottoming out, that’s an automatic 911 call”. Dr Oster had told me.
I could always tell when I had low blood pressure and a high heart rate and was going into shock. My skin would turn bluish-gray and I would alternate between having chills and hot flashes. The world would start trying to pin me down. Exhaustion would overwhelm me along with a pull towards the darkness of the unconscious.
No matter where I was when the low blood pressure hit, I would have to call for an ambulance. If I was at home it wasn’t the biggest deal in the world, but if I was in an embarrassing place it was awful. Pretty much anywhere in public fell under the category of an embarrassing place. The more people around, the more embarrassing it was. Sometimes I would need to call an ambulance from art class. Other times I would be at the mall or the park with friends.
The whole genre of my healthcare had changed when I first woke up, swathed in warm blankets after my emergency surgery for a bowel perforation. I had just been raced over from the children’s psychiatric unit ten hours earlier before my eight-hour surgery after one of the nurses realized that there was something seriously wrong with me.
When she took my vital signs my blood pressure was in the basement and my heart rate was dangerously high. I’d also had a fever of 105.5. Suddenly I’d felt myself being loaded into a wheelchair and raced off the psych unit and into the CT scan suite.
“They need to get a picture of the inside of your belly,” Liz had explained to me when we got to the room where they do the CT scans.
My current nursing care team was only made up of two people. Laurie, my PCA, and Jackie, my nurse. However, about a week earlier, my nurse Jackie had dropped the bucket of bad news over my head. She was going back to school to become a nurse practitioner. After posting a whole lot of Facebook ads and interviewing three to four nurses, I made contact with Melody. As I tried to describe the nursing care I required in medical terms, Jeff butted in. He gave her the rundown on what I was like and how my care worked. Jeff described me as some sort of high-tech, inflatable Barbie doll toy. He explained that I needed to be hooked up to charge overnight.
Melody grinned at me, “I’m up for a challenge! I’d like to do more than just provide nursing care and keep you alive. I’d like to see you thrive. If you decide to hire me, we can do lots of awesome stuff together. We can drive down to see your parents and grandparents. Other times we can go to the park with Jeff to race remote control cars. Or we can go to the mall to shop at The Children’s Place or Justice. Sometimes we can even do art projects together. I would really love if you could share some of your writing with me!
After Rosh Hashanah, the Jewish New Year, my mom drove Jeff and me back to Side by Side and life went back to its daily rhythm. However, the specter haunting the unspeakable background of our minds was the question of whether Jeff actually had cancer blooming within his belly. Would the presence of this possible cancer permanently remove him from the liver transplant list, which was his only chance at long-term survival?
Jeff had an appointment with Dr. Xander, his GI doctor coming up.
We tried to distract ourselves from the appointment by working on the “Intro to Judaism Class”, watching movies, and playing with our teddy bears, but no matter what, time was ticking by. It was only a matter of time before it was November 2nd and we found out whether or not Jeff really had cancer.
After meeting with the Rabbi to go over what it will take to convert to Judaism, Jeff closes the door and turns to me. .“You are the highest maintenance girlfriend I have ever had. I am about to get naked in front of some crazy rabbi who is going to make me stick myself in the dick with a fucking blood sugar testing needle and then go skinny dipping in a collection of rainwater while singing prayers in a language I don’t know and know I will never be able to learn. Before I do that I’m going to have to sit through eight weeks of classes that I won’t be able to focus on or comprehend. The craziest thing is that I am going to do it all because I love you more than I can even express with words.
I had barely finished the IV antibiotics for the UTI when I started to feel really dizzy and lightheaded all the time. I would never in a million years have connected feeling dizzy and lightheaded with my g-tube drainage bag
“Your lips look so dry,” Jeff kept telling me, “Do you need Chapstick?”
“I’ve been putting tons of it on,” I told him, showing him the Chapstick I carried in the purse that I kept clipped to the arm of my wheelchair.
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