My Lifetime Struggles with Low Blood Pressure

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.

Calling an Ambulance When The Low Blood Pressure and Shock Hit

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.

I hated calling attention to the way I was sick and different from other kids my age. It was bad enough that I had the NJ feeding tube sticking out my nose and had to wear the backpack carrying my tube feed and feeding pump everywhere I went. The last thing I wanted was for people to see I was so sick that I needed an ambulance with lights and sirens to come pick me up and rush me to the hospital.

Trying to Stay Conscious With Extremely Low Blood Pressure

It was always a struggle to stay conscious until the ambulance arrived. However, between my low blood pressure and too rapid heart rate, it was a huge feat. Many times I just wouldn’t have enough blood flow to my brain to keep me conscious and I would pass out completely. Other times I would flicker in and out of consciousness while waiting for the ambulance to get there. Events would come in and out as snapshots on a Kodak camera as my low blood pressure had me zoning in and out of consciousness.

People standing over me. FLASH. A group of strangers arguing about whether or not they should move me. FLASH. Someone trying to talk to me. FLASH. The sound of sirens getting closer. FLASH. The street outside the strip mall getting bathed in red and blue lights. FLASH. An EMT sternal rubbing me. FLASH. A blood pressure cuff tightening around my arm. FLASH. An EMT saying “Holy Crap” about my low blood pressure. FLASH.

Waking Up In The Pediatric ICU After a Low Blood Pressure Issue

Days later I would wake up in the Pediatric ICU and they would tell me that my low blood pressure combined with my tachycardia had put me into hypovolemic shock again. I would be hooked up to every kind of IV bag you could imagine. My neck would be hosting a triple-lumen central line. There would be a catheter in my privates. Stitched into my wrist would be an arterial line. Usually, I would spend a couple more days in the pediatric ICU and then get transferred to the adolescent medicine floor. As they rolled my stretcher through the doors, Cindy my assigned nurse because I was such a frequent flier, would always greet me.

“Here comes Rebecca of Sunnybrook Farms,” she would say. To announce my grand entrance to the adolescent medicine floor.

While I was in the hospital, Dr. Kaye, Dr. Oster, and the hospital doctor would try to problem-solve. They would try to adjust my cardiac medications so it wouldn’t happen again. It always happened again. My low blood pressure and high heart rate were forever out of sync.

Then suddenly when I was eighteen, my blood pressure spiked crazy high, and was reading crazy high numbers like 170/110. Not only that, but I had also developed severe, intractable headaches. It felt like someone was hammering a white-hot spike into the side of my head. These weren’t normal headaches that lasted a few hours and went away with Advil, Excedrin, or Tylenol. The headaches I had started experiencing lasted days, and only went away with Oxycodone.

Headaches and Being too Scared to Grow Up

Dr. Kaye explained to me that the headaches were probably a result of the high blood pressure.

“The doctors that deal with blood pressure are nephrologists and kidney doctors. I will make you a referral to one. Because you’re eighteen now, I will refer you to an adult nephrologist. It’s time to start transitioning to adult services.”

When she said that, it freaked me out. I wasn’t ready to be an adult. Even though my IQ tested at 153 which was in the genius zone, when I had testing done, the testing showed that physically and psychologically I was only eleven. I loved pink, teddy bears, and ballerina music boxes. When I had big problems I liked to defer to the adults.

Trying to Stay on The Pediatric Floors Forever

I liked being on the adolescent floor with the video games in the Teen Activity Room, the big flat-screen TV with a bazillion DVDs to choose from, all the board games to play with my mom or Child Life, and the art project cart that Child Life would roll around to each room so we could pick out something creative to do. It was especially awesome when Child Life handed out stuffed animals or soft blankets.

On the adult floors, they didn’t have any of that. They just had grumpy nurses and ornery aides.

My First Appointment about my no-longer low blood pressure

My mom came with me to my first appointment with the kidney doctor. Her name was Dr. Green. When she asked about my medical history I rushed to answer before my mom had a chance to talk. I kept my fingers on my left hand crossed inside my sweatshirt sleeve in hopes my mom wouldn’t butt in with her ideas of what was wrong with me that she shared with my dad.

My Medical History

“I’ve had gastroparesis since I was ten. Originally, prior to the correct diagnosis, I had an NG tube placed that resulted in a whey protein bezoar that caused a bowel obstruction. Then I 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 a lot of cardiac issues. My heart goes into a-fib frequently, and occasionally atrial flutter. My baseline is sinus tachycardia. I do have POTS. My doctors think my crazy electrolyte levels cause a lot of my cardiac issues. Keeping my potassium up is a never-ending battle.

History of My Low Blood Pressure

I don’t absorb potassium through my NJ tube or by mouth so I have to get it IV pretty often. I’m in and out of the hospital a lot. I came to see you today because I used to have super low blood pressure that dropped even lower when I stood up, but lately, my blood pressure has spiked in the other direction. On average they’ve been 170s/110s and go up when I stand up.” I explained to her.

“Wow, you’re a great historian,” Dr. Green told me. “I’ve had nurses not give reports as comprehensive as you. Anything to add to that wonderful background, Mom?”

“Well, actually,” my mom began.

My stomach lurched.

My Mom’s Description of My High and Low Blood Pressure

“My husband and I have slightly differing opinions of Becca’s illnesses. Becca has always been very emotional, and when she was ten she began developing an eating disorder. It was a young onset, but she was on a highly competitive gymnastics team 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 always talked 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,” insisted Dr. Green. “You had your turn, now it’s her turn.”

The Way My Mom Twisted My Medical History Into Her Own Little Story

“So she stopped eating completely when she was ten, despite the help of therapists, psychiatrists, and her pediatrician. She ended up going into acute kidney failure from dehydration and passed out in an elevator due to the kidney failure 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 she had some sort of reaction to the feeding tube formula they were feeding her through an NG tube.”

By then I knew what had happened to me. No one could fool me any longer about what had gone on. Certainly not my parents and their eating disorder theory. I knew I hadn’t simply had a reaction to what they were feeding me. The doctors had diagnosed me with gastroparesis and both my parents and I had heard their words clear as day.

How The “Specialized Psychiatric Unit” Almost Killed Me

On the psychiatric unit they had almost killed me by continuing to feed me. They would draw back on the syringe to see if I was digesting the feeding, but there were tons of undigested formula in me. That should have been enough to get them to pause the feedings.

When I told them I felt sick, they should have taken my vital signs. I had undeniable physical signs of pain that should not have been ignored. My normally low blood pressure and respirations had jumped higher and higher. At the same time, my already rapid heart rate hit crisis level. My pain just kept intensifying.

The last few days in the psych unit were the worst. Right before my bowel perforated my stomach grew more and more distended. It even physically felt harder. The nurses in the psych unit ignored this. They continued to feed me through the NG tube even when I had no bowel sounds, had abdominal pain, and kept vomiting up the whole tube.

Was Dr. Green Fooled?

The nurses would accuse me of pulling it out and swear to the doctor and the social worker that they’d seen me do it. While they were forcefully jamming it back in, and grunting at me to swallow they would chastise me for pulling it out so that I would avoid gaining weight.

Dr. Green was listening, but she was also scanning through her computer. I glanced at her screen. She was looking at my records. I could see that she had pulled up my surgery report from my perforated bowel, then the results of my gastric emptying scan showing severe gastroparesis, and then my latest labs with my potassium in the toilet.

Dr. Green’s Explanation to My Mom About My Gastroparesis

She nodded at my mom, then spoke.

“That’s an interesting theory about the eating disorder, but this surgery report shows that she had a perforated bowel from her gastroparesis,” she tilted her computer screen so my mom could see it. “And this endoscopy shows her stomach is barely contracting.” My mom blinked a few times and looked taken aback. “Then this four-hour gastric emptying study confirms that she has severe gastroparesis.”

“But her eating disorder could have caused the gastroparesis right?” my mom asked.

“It takes years of an eating disorder to cause gastroparesis,” Dr. Green told my mom. “There’s nothing wrong with admitting she has gastroparesis.”

How My Mom Made a Second Attempt at Passing Me Off as a Psych Case

“But…but…but…” my mom’s voice trailed off. She dropped her hands in her lap and studied them.

I almost felt bad for her.

Finally, my mom spoke again.

“I’ve noticed she gets flare-ups when she’s stressed, and that’s when she requires the NJ tubes. When she can stay calm she’s fine.”

There she was, back at her games again.

“As for these other problems, if she could just get on the right anxiety medication all of her heart issues would settle down and she wouldn’t have low blood pressure or high blood pressure. The only reason she had low blood pressure was because she was dehydrated.

Dr. Green continued to nod at my mom to let her know she was listening and scanning through my chart.

How Does Dr. Green Veto My Mom’s Excuses

“Again, that’s an interesting theory, but I’m looking at her lengthy hospitalizations, ones longer than a week, where she was on IV fluids the whole time and couldn’t possibly be dehydrated. Her blood pressure is just as low. Plus there has to be a reason her blood pressure went from way too low to way too high with no other changes.”

My mom opened her mouth like she was going to speak and then shut it again.

“Why don’t we take your blood pressure,” suggested Dr. Green. She pulled away from her computer on her rolling stool and grabbed the automatic blood pressure machine, it took her a few minutes to dig up a child-size cuff, but she finally found one and wrapped it around my arm. After it finished reading the number on the screen read 188/113. I certainly didn’t have low blood pressure anymore.

The plan Dr. Green Maps Out For Me

“Normally I would send you to the ER for a blood pressure like this, but when my medical assistant checked you, you were 171/101. What I’m thinking is that maybe we just stressed you out during this appointment,” Dr. Green smiled at me.

I laughed and nodded.

“Either way, your blood pressure is dangerously high. I’m going to order a bunch of labs to get to the bottom of why your blood pressure is so high. We’ll order labs to check your thyroid, adrenals, and of course kidney function. I’m going to check a full metabolic panel and a complete blood count too, plus a few more odds and ends. In total, it’s going to be about ten tubes of blood, so I want you to put 10 ounces of Pedialyte going at 60 ml an hour down your NJ tube afterward.”

By then I had been taking care of my own NJ tube and pump and crushing and mixing pills all by myself for years. My mom had always hated messing with my tube.

My Mom Was In Shock That She Didn’t Get Me Excused as a Psych Patient

“Any questions, Mom?” Dr. Green asked my mom.

My mom was still sitting there with her hands folded in her lap looking stunned.

She wasn’t used to doctors standing up to her and proving her stories were wrong. Usually, after she spun her little tales to the doctors. Then the doctors would nod their heads up and down, note that I had a psych admission in my chart, and look at me as a crazy, incompetent little kid making up symptoms for attention.

Then they would half-heartedly press on my belly in a few spots. After that, they would listen for bowel sounds which they could hear once every fifteen minutes. Because of my mom’s detailed storytelling they would decide it was my liquid oxycodone affecting me.

This meant they would nod, agree with my mom, and recommend counseling. Then my mom would take me home and tell me I didn’t need to keep going to all those doctor’s appointments, I was fine physically.

My mom refused to accept any of my medical diagnoses, of which I’d collected quite a few since age eight.

Dr. Green Finally Broke Through to My Mom

“I think this will be a good starting point. We’ll regroup in three months to look at all your results and see what we can figure out. If we can’t find a diagnosis based on the tests we run between now and then we will do an ultrasound of your kidneys as the next step along with some urine studies.” Dr. Green told us breaking the awkward silence.

My mom and I nodded and as we left the office my mom was still very quiet. That first appointment with Dr. Green was when she first started to realize that something physical was actually very wrong with me besides just the gastroparesis which she always thought of as minor tummy troubles even though it’s a life-threatening disease that can destroy individuals and their families and take lives.