Tag: oxygen dependent
by Becca on December 7, 2020
I had been at Hillcrest Commons (Or as I liked to refer to it, Hell-Crest Commons) for 3 months. Jillian, the nurse practitioner overseeing my care, decided that we needed to have a meeting with all of my care team and my parents.
The meeting was an absolute disaster.
Every time I tried to talk to Jillian she insisted that my disease wasn’t as bad as I said it was and that she could get me off of most of my meds, off of the IV fluids, get my port removed, get me eating again, get my GJ tube removed, and get me walking with no assistive devices. She had shared this viewpoint with my parents and got them so full of hope that they were willing to do just about anything with me or to me in order to get me there.
This was a big problem.
The top … Find Out What Happens Next
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Tagged as: bad family dynamic, Berkshire Health Systems, Chronic illness, chronic illness blog, conversion disorder, department of mental health, Dr. Anne Oaklander, family issues, father daughter relationship, feeling abandoned, gastroparesis, GJ tubre, IV fluids, IV nutrition, loss of mobility, malabsorption, Mass General Hospital, neglect of a disabled person, nursing home, nursing home abuse, nursing home neglect, oxygen dependent, Port-a-cath, Sick, Small Fiber Autonomic Polyneuropathy, small fiber neuropathy, spoonie, TPN, tubefeeding, tubie, wheelchair bound
by Becca on November 30, 2020
After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed … Find Out What Happens Next
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Tagged as: abandonment issues, ambulance, anxiety, bad family dynamic, Berkshire Medical Center, blog, chronic illness blog, chronically ill, depression, desatting, emergency room, EMTs, family issues, feeding tube, GJ tube, Jonestown massacre, low blood sugar, medical PTSD, mental health eval, mental illness, nursing home, nursing home abuse, nursing home neglect, oxygen, oxygen dependent, Port-a-cath, psych crisis, ptsd, Sick, spoonie, tubie, writing
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 27, 2020
Feeding through a J port is supposed to help people with gastroparesis get much-needed nutrition that they can’t get by eating orally or by getting fed through a G tube. A person with gastroparesis has a paralyzed stomach so a J tube which goes straight into the Jejunum skips over that paralyzed stomach and goes right into the middle of the small intestine is a way to give the person.
Now that I had the tube feeds and the IV fluids, I was feeling a lot better physically most of the time as I wasn’t actively starving to death, but I would still have breakthrough periods where the pain would get intense, or I’d get nauseous and start vomiting huge volumes of bile and/or tube feed. The tube feed was going into my intestines through my J tube, which was supposed to prevent me from vomiting it up. Still, it … Find Out What Happens Next
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Tagged as: ambulance rides, atelectasis, autoimmune, autonomic neuropathy, dehydration, dextrose, diaphragmtic weakness, dysautonomia, family issues, fluid and electrolyte issues, gastroparesis, GJ tube, hospital, hypokalemia, immodium, IV fluids, IVIG, low potassium, nursing home, oxygen dependent, pepto bismol, POtS, small fiber neuropathy, therapy, tube feeding, tubie