Tag: hypotension
by Becca on November 29, 2020
Living at Hell-Crest Commons was a nightmare. After a three-month-long hospital stay at my local hospital for a flare up of my autoimmune-mediated small fiber autonomic poly neuropathy (that was getting worse and worse every few months) I had gotten really deconditioned.
“You need a whole lot of PT and OT to get you back to a point where you can function at home and in the community,” the doctor and case manger both had explained to me months ago. My impression of the situation was that I was going to Hillcrest Commons for a few months for therapy and then going back home.
After three months at the nursing home, we had a big meeting and they dropped a bombshell on me. My parents weren’t going to let me come home. They didn’t want to take care of me anymore because they wanted their ffreedom. I was a burden … Find Out What Happens Next
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Tagged as: being underweight, central line, Chronic illness, complex care team, dehydration, diabetes insipidus, dysautonomia, foley catheter, gastroparesis, GJ tube, hypoglycemia, hypokalemia, hypotension, IV fluids, J tube versus G tube, lethal heart rhythms, low blood sugar, low potassium, Mass General Hospital, nasal airway, nausea, neuropathy, nursing home abuse, nursing home neglect, ombudsmen, pain meds, Port-a-cath, Sick, Small Fiber Autonomic Polyneuropathy, spoonie, trauma room, tube feeding, tubie, ventricular fibrillation, ventricular tachycardia, vomiting
by Becca on November 25, 2020
A meltdown in my room of Hell-Crest Commons, the nursing home I’d been living in for three months, had prompted that awful nurse practitioner, to send me to the hospital to get evaluated by psych crisis. Jillian was my primary care provider at the nursing home.
Who wouldn’t have had a meltdown after that meeting though? At the meeting they told me that I was faking all of my illness because I liked being sick and that she was going to stop my IV fluids. My IV fluids were keeping me alive. They were one of my main treatments, but that wasn’t even the worst part of the meeting.
At the meeting they had dropped the bomb on me that I was never allowed to go back to living at home.
After the meeting I went back to my room where I couldn’t stop crying. Tanya the social worker, and … Find Out What Happens Next
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Tagged as: bad family dynamic, central line, Chronic illness, chronic illness blog, dehydration, electrolyte imbalances, emergency room, family issues, health care proxy, hypotension, IV fluids, low blood pressure, low blood sugar, low magnesium, low phosphate, low potassium, nursing home, nursing home abuse, nursing home neglect, ombudsman, oxygen dependent, Port-a-cath, POtS, psychiatric crisis, Sick, Small Fiber Autonomic Polyneuropathy, small fiber neuropathy, spoonie, suicide precautions, tachycardia, tubie, wheelchair bound
by Becca on September 30, 2019
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 … Find Out What Happens Next
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Tagged as: a fib, atrial fibrillation, cardiology, caregiver abuse, child life, dehydration, eating disorder, EKG, electrolyte imbalances, headaches, hospital, hypertension, hypokalemia, hypotension, hypovolemic shock, ICU, kidney disease, low blood pressure, low potassium, nephrology, pediatric ICU, PICU, psychosomatic, ptsd, rhythm strip, shock, Sick, sinus tachycardia, spoonie, SVT, tachycardia
by Becca on July 23, 2019
My pediatric cardiologist was extremely concerned about me by the time I was thirteen. He stayed in close contact with Dr. Kaye, my adolescent medicine doctor. When I was lying down on that crinkly white paper on the exam table, my heart rate was usually about 120. Sitting up it was usually about 135, and when I stood up, it was in the 150s. Neither Dr. Kaye or Dr. Oster, the cardiologist, ever said anything about those numbers being abnormal, but I read it right off their faces.
After they left the room I looked it up on my phone. A normal heart rate for a teenager is 60 to 100 beats per minute, and it shouldn’t fluctuate like that with changes of position.
Dr. Oster said they wanted to run a bunch of tests on my heart shortly before my fourteenth birthday. I was not surprised.
The EKGs and … Find Out What Happens Next
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Tagged as: a fib, adenosine, atrial fibrillation, atrial flutter, cardiology, cardioversion, Chronic illness, dysautonomia, EKG, emergency room, heart monitor, hospital, hypokalemia, hypotension, kidney issues, low blood pressure, low potassium, passing out, pediatric cardiology, pediatrics, postural orthostatic tachycardia syndrome, POtS, sinus tachycardia, spoonies, SVT, syncopal episode, syncope
