From the time I was nine my entire life had consisted of medical appointments after medical appointments. By the time I was nine and a half I had been misdiagnosed with an eating disorder, and at age ten I passed out in an elevator and was sent to the hospital for my first hospitalization and first feeding tube.
My first feeding tube was an NG tube. It stayed in the whole month that I was being stabilized on the medical unit. On the medical unit, I was put on specialized IV fluids, hooked up to a heart monitor, a blood pressure monitor, and an oxygen monitor. The hospital discovered that I had been in acute kidney failure and had to nurse my kidneys back to health.
After a month in the medical unit, I was finally pronounced medically cleared and was transferred to the pediatric psychiatric unit with the NG tube still in place to treat what everyone was calling, “an eating disorder”.
I didn’t actually have an eating disorder. The real reason I wasn’t able to eat was that every time I ate over the last two years I got uncomfortable bloated, and then experienced severe pain followed by severe pain and vomiting that would keep me in bed for days.
The doctors, nurses, and my parents, told me to take little sips every half hour, and at first, this would work, but by hour three or four I would projectile vomit out all the little sips all at once. After weeks of vomiting, I finally decided that it was better to not even try.
I lasted a week and a half on the psych unit before having my first emergency surgery and NJ tube at Schneider’s Children’s Hospital when the tube feed congealed into a hardened mass called a bezoar that caused a bowel obstruction and then perforation which no one noticed and just chalked me up to me being a hypochondriac because I was a psych patient on a psych unit so of course, I couldn’t have anything physically wrong with me, Luckily my favorite nurse was on shift the day my intestine perforated and she was able to take my vitals and rush me over to the pediatric medical side where iI had emergency surgery and removed 2.5 inches of dead bowel. I was stabilized for about a month on the pediatric floor. After all of that, I was discharged to a partial hospitalization program because of my complex PTSD. The rest of my childhood was spent going in and out of hospitals for my gastroparesis, my heart, my blood pressure, my anemia, my electrolyte levels, hypovolemic shock, and passing out.
For most of my life, my blood pressure was ridiculously low, and when I stood up it dropped even lower, however, when I was around eightteen years old I started having issues with my blood pressure spiking up to stroke-high levels. Dr. Kaye had recommended that I see a kidney doctor to get to the bottom of it. Dr. Green the kidney doctor had been running test after test but they were all coming back negative, other than the fact that I had developed type 2 diabetes because somehow I had gone from weighing 80 pounds to 180 pounds in 6 months without changing my diet.
At my three months follow-up with Dr. Green, I once again had her stumped. The 24-hour urine test she had run, had come back negative for porphyria and my catecholamines were normal. She had prescribed me 100 mcg of levothyroxine after checking my blood levels of TSH and free T4, and realizing that I had hypothyroidism. Now my TSH and free T4 were normal as well. On all ultrasounds and labs, my kidneys appeared healthy, however, I was so far from healthy I couldn’t even brush healthy with my fingertips if I stretched out my arms.
As we were following Dr. Green’s advice; I had been to the ER multiple times in the three-month gap between my second appointment and the third one. She had instructed us to go to the ER every time the top number of my blood pressure went over 200. The thing was every time I was at the ER they would order blood work and my potassium would end up being so low they would have to admit me to the hospital at least overnight to get me replenished, and because of just how low it would go they would usually have to admit me either to the ICU, stepdown, or telemetry units because it would be so low it would be endangering my heart. Low potassium can be very serious if not properly addressed. It can cause fatal arrhythmias. A couple of times they caught me going into v-tach and the heart monitor would go nuts and people would come racing into my room pulling emergency equipment behind them. I always returned to normal before anything too scary happened, but it sure caused a panic.
I hadn’t continued to gain weight, I’d stayed stable at 180, but my blood sugar was not being controlled. Dr. Gordon had added another oral hypoglycemic agent called Glipizide. The only problem with the Glipizide was that if I didn’t drink the exact same amount of the Glucenra every day my blood sugar would drop so low I could go into a hypoglycemic coma. I would have to keep a really close eye on my blood sugar while I was on the med. I had to test every four hours to keep on top of things. I felt like my life had become one long medical procedure.
I also went into the kidney disease clinic once a month for three or four hours to get an iron infusion and an additional potassium and vitamin infusion through a peripheral IV. They were quickly running out of spots to put IVs in me. Sometimes when I went to the ER they were needing to tilt the whole stretcher backward and put IVs in my neck because I was getting so dehydrated and scarred over. It usually took at least four tries to get IVs in, even when they used ultrasound guidance. Sometimes when they were putting EJ lines in me the doctors would have me stick my thumb in my mouth like I was sucking on it and then blow really hard on it to get the vein to pop up. It would make me feel ridiculous.
Different doctors and nurses in the ER began getting on me about bringing up with my primary care team the possibility of getting some sort of central line placed for situations like this. We were quickly running out of spots for peripheral IVs, plus I was needing them so frequently for the chronic dehydration, low potassium, and monthly iron infusions.
“You get sick so easily, I’d like to stick with the peripheral lines as long as we possibly can. If we absolutely need to; in the next year or so I’ll have you get a port-a-cath,” Dr. Green decided about central line access,.
“As far as figuring out what’s causing all of this, the only test I can think of left to do is 24-hour urine cortisol. I can’t imagine it will tell us much just because your AM cortisol was normal, but with your moon face, high blood pressure, rapid weight gain, and rapid heart rate we have to.”
So Dr. Green sent me home with a collection hat, orange jug, and labels in hand and I collected all my pee for yet another 24 hour period not expecting anything to come out of it once again.
Depression was beginning to set in. My whole life had gone to revolving around medical procedures and my health. At least I still had my pre-nursing classes and studying and novel I was working on to take my mind off the fact that pretty much every other waking and sleeping moment of my life revolved around medical procedures and doctors’ appointments, emergency room visits, and hospitals and my health. The worst part was that we didn’t even know what was causing all this ruckus.