About four or five years after my heart problems had climaxed, my blood pressure took a surprising turn.
My whole life my blood pressure had run so low we worried about me tripping over it. This had always been concerning to Dr. Oster and my other doctors because with such a high heart rate and such low blood pressure it was too easy for me to go into hypovolemic shock. In fact, one of the reasons I was admitted to the hospital so frequently was due to hypovolemic shock. We referred to it as bottoming out.
When I bottomed out, I would turn bluish-gray, get really clammy, and if I caught it myself before it got too severe, I would call for my own ambulance from wherever I was. It was the worst when I wasn’t home and was in an embarrassing place. An embarrassing place was pretty much anywhere in public where I had to call attention to myself and the fact that I was sick and different from other kids my age.
It was bad enough that I had the feeding tube coming out of my nose and that I had to carry around a backpack with a tube coming out of it everywhere I went. When I needed an ambulance with lights and sirens to come to get me and bring me to a hospital, it made me feel like I was showing myself as being too weak and too sick to be able to care for myself. That made me want the ground to split apart and swallow me whole. I hated being different. I hated needing to go to the hospital at least once a month.
Sometimes I would need to call the ambulance from my art class. Sometimes I would be at the mall or the park with friends.
I would start getting really lightheaded, really dizzy, really clammy, and really shaky. My heart would start pounding. Then I would ask one of my friends what color I was. When they said my lips and face were turning blue I would know I needed to call 911 to get to the hospital.
If the ambulance got there soon enough, I wouldn’t pass out before I got to the hospital and could occasionally avoid getting sent to the pediatric ICU as opposed to the regular adolescent medicine floor. Usually though, even if I called for myself, my blood pressure would eventually drop too low. With my blood pressure so low and my heart rate so high, I would simply not have enough blood flow to the brain to keep me conscious and I would pass out completely.
Sometimes I would flicker in and out of consciousness for a little bit while waiting for the ambulance to arrive, no matter who called for it. I would usually see things in frames as I flashed in and out of the blackness.
I would see people standing over me. FLASH. They were arguing over whether they should move me or not. FLASH. Someone was trying to talk to me. FLASH. Someone was trying to shake me. FLASH. EMTs were taking me somewhere. FLASH. EMTs were trying to talk to me. FLASH. I was in the ER. FLASH.
Hours to days later, I would wake up in the pediatric ICU and they would tell me I had gone into shock again. I would stay in the PICU until I was stabilized and then would be transferred to the adolescent medicine floor where we tried to adjust my cardiac medications and tried to problem-solve with the hospital doctor, Dr. Oster, and Dr. Kaye on how to keep it from happening again.
It always happened again. My heart rate was just forever too labile and my blood pressure was just forever in the toilet, but then suddenly at age 18, my blood pressures spiked up and were reading crazy high numbers like 170/110. Not only that, but I had also developed severe intractable headaches.
I’d suffered from bad headaches since I was eight, but these headaches were of a whole new class. They felt like someone was hammering a white-hot spike into the side of my head.
My normal headaches lasted a couple of hours and went away with Motrin or Advil. These sometimes lasted days and only went away with oxycodone.
Dr. Kaye explained to me that the headaches were probably a result of my high blood pressure and that kidney doctors are the ones who deal with blood pressure issues, so she referred me to a nephrologist.
She referred me to an adult nephrologist because now that I was eighteen it was time to start transitioning from pediatric services to adult services. This freaked me out. I wasn’t ready to be an adult.
First of all, despite the fact that my IQ tested at 153 which was considered to be in the genius range, I had a developmental disability, and my developmental age was only eleven. Second of all, I loved pink and teddy bears and stuffed animals, and ballerina music boxes. Also, because of my developmental disability, I had to defer to the adults for the big problems anyways.
I liked being on the pediatric floors with video games and the child life specialists that came around with art projects, movies, and games. The teen activity room on the adolescent floor was awesome too. On the adult floors, they had none of that, and they had grumpy nurses and ornery aides.
My mom came with me to the intake appointment with the kidney doctor. When the kidney doctor asked me about my medical history, I did my best to answer before my mom, and kept my fingers on my left hand inside my sweatshirt sleeve crossed tight, in hopes that my mom wouldn’t say anything about her and my dad’s opinion of what’s wrong with me.
“I’ve had gastroparesis since I was ten. Originally, prior to the correct diagnosis, I had an NG tube placed that resulted in a bezoar causing a bowel obstruction. I then had surgery to remove 2.5 inches of dead bowel. After that, I had a gastric emptying study and was diagnosed with gastroparesis. Since then, I have had NJ tubes on and off. I also have had episodes of SVT, and a-fib, and have sinus tachycardia (a normal heart rhythm, just very fast heartbeat) as a baseline. We think a lot of my cardiac problems are caused by electrolyte abnormalities, but the sinus tachycardia seems to happen even when my electrolytes are all perfectly normal.
I came to see you today because I used to always have low blood pressure that got even lower when I stood up, but lately, my blood pressure has been much higher. On average they’ve been 170s/110s and go up when I stand up.” I explained to her.
“Wow, you’re a great historian,” she told me. “I’ve had nurses not able to give reports as well as you. Anything to add to that wonderful report mom?”
“Well actually,” my mom began.
My stomach lurched.
“My husband and I have slightly differing opinions of Becca’s illnesses. See Becca was abused sexually by a family friend as a young child and we believe it triggered an anxiety disorder, depression, and an eating disorder in Becca. Becca has always been very emotional and when she was eight, she began developing an eating disorder. It was a young onset, but she was a young gymnast, and the coach was putting pressure on the girls to have a certain body type.”
“No, he wasn’t” I interrupted. “Coach Brian never would have done that.” My blood was boiling. Coach Brian had always talked to us about loving our bodies no matter what size and shape they were. He used to take us out for ice cream after meets. Now my mom was inventing stories!
“Let your mom talk,” Dr. Green insisted. ‘You had your turn, now it’s her turn.”
“So, she stopped eating completely when she was ten, despite the help of the therapists, psychiatrists, and pediatricians. She ended up going into acute kidney failure from dehydration and passed out in an elevator due to that and low blood sugar. Eventually, we got her into a specialized psychiatric hospital in New York, but she had some complications. She had a reaction to the Klonopin they put her on, and then some sort of reaction to what they were feeding her.”
By then I had done my own research into exactly what had happened to me. No one could fool me any longer about what had gone on, certainly not my parents. I knew I hadn’t simply had a reaction to what they had been feeding me. I knew I had gastroparesis. I also knew the psychiatric unit had almost killed me by insisting on continuing to feed me through the NG tube and by mouth while I continually vomited it back up, had way too high residuals, and told them I felt too sick to eat and had undeniable physical signs of pain that couldn’t be faked.
My blood pressure, pulse, and respiration rate had all jumped higher and higher as my pain got worse and worse during my last few days on the psych unit before my bowel perforated. The nurses at the hospital had even ignored that my stomach got more and more distended and harder in the last few days. The hospital ignored all those signs. They continued to feed me through the NG tube when I had no bowel sounds and was vomiting, having abdominal pain, and puking so forcefully, I was vomiting up the whole tube.
The nurses would accuse me of pulling it out and would swear to the doctor and social worker that they’d seen me pull it out. While they were forcefully jamming it back in and grunting at me to swallow they would fully chastise me for pulling it out so that I would avoid gaining weight.
“I had much more than just a reaction to what they were feeding me!” I burst out, despite Dr. Green’s previous comment about letting my mom talk. Still, I was thinking back to that awful bowel obstruction surgery and its aftermath, and here’s my mom passing it off as ‘some sort of reaction to what they were feeding me.
“Let your mom finish talking,” Dr. Green told me again.
“After the reaction to what they were feeding her, she had surgery and got diagnosed with gastroparesis.”
At least we agreed on something!
“I’ve noticed she gets flare-ups when she’s stressed and that’s when she requires the NJ tubes for prolonged periods of time. When she can stay calm, she’s fine.”
I cringed but said nothing.
“As for these other problems, I feel like if she could just get on the right anxiety medication, all of her heart issues would settle down, and her blood pressure would come down. The only reason her blood pressure was ever too low was because of her lack of hydration. She just needs to drink more fluids and get off some of these crazy medications. Becca is a generally healthy girl who has some really bad anxiety that is being medicalized terribly.”
Yeah, my anxiety is making it so I can’t absorb electrolytes. My anxiety is making my stomach paralyzed. My anxiety is making my heart’s upper chamber not pump efficiently. My anxiety is making is preventing my body from processing enough liquids to keep my blood pressure up. My anxiety is affecting my kidney function. My anxiety is causing me to go into hypovolemic shock.
I was so angry at how totally invalidated my situation was getting that my whole body was literally quivering. I didn’t even know how to react. I was afraid of how badly I would snap if I even spoke, so I bit back my words and just sat there watching the situation. It was like I was removed from it and watching it, but my body was pinging like a string pulled so tight it would snap if it were stretched anymore.
Dr. Green was staring at my chart on the computer screen going “hmm…umm…hmm….” as she listened to my mom and I was afraid to know what was running through her head. I was afraid of getting passed off as a psych case like my GI docs had been doing lately because I had stopped responding to all gastroparesis meds and no nausea meds seemed to work anymore either.
Dr. Green proceeded to take my blood pressure.
188/113
“I would normally send you to the ER for blood pressure this high, but when my medical assistant took your blood pressure it was 162/107, so I’m going to bet we stressed you out with this appointment. I’ll have you monitor your blood pressure at home religiously. I want you to check it twice a day and write it down for me. Whether your blood pressure is 162/107 or 188/113, it’s really high and needs to be addressed, It may be anxiety playing into this, or it may be something more serious. Either way, it needs to be looked at. I’m going to order a bunch of labs to look at thyroid function, adrenal gland function, and of course kidney function. I’m going to check a full metabolic panel and more too. It’s going to end up being about ten tubes of blood so I want you to drink some juice right afterward.”
We’ll start there. If that doesn’t show anything, then I want to get an ultrasound of your kidneys. This is our starting off point. I want to see you back in a month to regroup and discuss.