Tag: low blood pressure
by Becca on January 3, 2021
When you have any sort of severe life-threatening chronic illness, there is a terrible feeling of being at the mercy of the medical system. If your doctor is in a bad mood it could be the end of your life. That is not an exaggeration.
I suffer from a disease called Small Fiber Autonomic Polyneuropathy, which is a very rare condition that most doctors have never even heard of, because of that I often get denied the proper treatment even though I know what the right thing to do is. The doctors don’t like to admit they don’t know something so they just plow forward with their ideas and I’m the one that gets hurt or sicker or almost dies (not an exaggeration, I’ve lost count of how many times I’ve almost died due to doctors who don’t know about my illness deciding they know more than me and going … Find Out What Happens Next
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Tagged as: Baystate Home Infusion back in 2015, brain tumor, chronic intestinal pseudo-obstruction, chronically ill, daily IV fluids, diabetes insipidus, dysautonomia, end stages of small fiber autonomic poly neuropathy, first appointment with Dr. Rose, G tube to drainage 24/7, gastroparesis, global dysmotility, high heart rate, hypothyroid, importance of advocating for self, increase doses of Florinef and Midodrine, Jeff being a sweetheart, life threatening chronic illness, low blood pressure, Mass General "Patient Gateway Portal", Medical Arts Complex in Pittsfield, medical PTSD, Muscles Harford, nephrology appointment, Port-a-cath, Sick, skin punch biopsy of less than 1%, Small Fiber Autonomic Polyneuropathy, spoonie, total digestive tract failure, tubie, wasting time waiting for chair van ride, wheelchair van ride paperwork
by Becca on December 9, 2020
About an hour earlier I had arrived at the only rehab/nursing home in the area that would take someone as medically fragile and medically complex as I am. The nursing home was called Hillcrest Commons, but I had started to call it Hell-crest Commons. From the moment I rolled in the door I knew I was in trouble, but when I med with the nurse practitioner that would be in charge of my case while I was there, her name was Jillian, I had full force alarm bells going off as loud as possible in my head. She basically told me that my disease wasn’t really as bad as I thought it was and that I didn’t need my tube feeding or my IV fluids. I knew this was wrong, I knew what the leading experts in the world on my disease had said about my treatment and I was … Find Out What Happens Next
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Tagged as: birthday, celiac disease, Chronic illness, code blue, death, DNR, feeding tube, friendship, G tube, GJ tube, grief, Hello Kitty, Hoyer lift, IV fluids, loss, low blood pressure, meetings, nursing home, nursing home neglect, occupational therapy, pain, physical therapy, Port-a-cath, Sick, spoonie, stand and pivot transfer, stuffed animal, tubie, underweight, weight loss
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
