Hello outside world!
It's the end of Day 2 in Johns Hopkins and I just got my laptop so here's the update.
After my lovely weekend with my friends, I spent most of Sunday relaxing on the couch. My BP was not great (78/49) and I spent a lot of the afternoon working to raise it (If I ever liked Gatorade, I don't anymore). After dinner I felt very ill. I got nauseous, with very little energy. I could feel my BP dropping so I spent the evening in the wheelchair. my vision went blurry and I couldn't focus on anything. In the middle of a conversation with Ally, I fainted in my chair. My family worked to pick me up out of the chair and lay me flat to try to regain consciousness. I was out for about 3 minutes and then spent another 20 minutes going in and out. When I tried to get up to use the bathroom after resting, I fainted again. I couldn't stand or walk or hardly sit up.
So we went to the Emergency room at Johns Hopkins Bayview Medical Center on Monday morning.
I only waited for about 2 hours in the ER before I was pulled into triage. Luckily (if you can call it that), I passed out twice in triage while they were trying to take blood. I really am a cooperative patient. At least this way, though, they started the process immediately. My memory here is very foggy but apparently they put in an IV port while I was unconscious. Then they admitted me to the ER, where I woke up and stayed until around midnight.
Since then, I have been admitted into the general hospital on the oncology and renal wing. They've been drawing blood and running tests. I've gotten a CT scan and multiple hormone level tests. I have a team of neurologists who are consulting with endocrinology and cardiology. More people have seen me naked in the last 24 hours than my whole life combined. This morning, a room of interns took turns squeezing my breasts and flicking my nipples in what they were calling a "lactic acid reflex test." I called it "The disintegration of the remains of my dignity."
So far, we have very little new information. I tested positive for orthostatic intolerance. No offense, doctors, but obviously.
Here's whats getting frustrating. Today, we were told we would meet with endocrinology. They did a series of hormone tests. We didn't see any other doctors until 8 pm when endocrinology came in for 5 minutes and gave us absolutely no information. They even tried to say that my symptoms don't present in accordance with normal pituitary abnormalities. So after several rounds of blood work and 48 hours in the hospital, we have actually taken several steps back.
I'm in for another night at least as we wait for labs to come back. I'm on bed rest with a "Fall Risk" tag, IV port, Tele heart monitor, and a BP monitor. It's my first night alone but I have my computer so I'm not too lonely. After a few blog updates and emails, I will escape to the wonderful relief of Netflix.
It's the end of Day 2 in Johns Hopkins and I just got my laptop so here's the update.
After my lovely weekend with my friends, I spent most of Sunday relaxing on the couch. My BP was not great (78/49) and I spent a lot of the afternoon working to raise it (If I ever liked Gatorade, I don't anymore). After dinner I felt very ill. I got nauseous, with very little energy. I could feel my BP dropping so I spent the evening in the wheelchair. my vision went blurry and I couldn't focus on anything. In the middle of a conversation with Ally, I fainted in my chair. My family worked to pick me up out of the chair and lay me flat to try to regain consciousness. I was out for about 3 minutes and then spent another 20 minutes going in and out. When I tried to get up to use the bathroom after resting, I fainted again. I couldn't stand or walk or hardly sit up.
So we went to the Emergency room at Johns Hopkins Bayview Medical Center on Monday morning.
I only waited for about 2 hours in the ER before I was pulled into triage. Luckily (if you can call it that), I passed out twice in triage while they were trying to take blood. I really am a cooperative patient. At least this way, though, they started the process immediately. My memory here is very foggy but apparently they put in an IV port while I was unconscious. Then they admitted me to the ER, where I woke up and stayed until around midnight.
Since then, I have been admitted into the general hospital on the oncology and renal wing. They've been drawing blood and running tests. I've gotten a CT scan and multiple hormone level tests. I have a team of neurologists who are consulting with endocrinology and cardiology. More people have seen me naked in the last 24 hours than my whole life combined. This morning, a room of interns took turns squeezing my breasts and flicking my nipples in what they were calling a "lactic acid reflex test." I called it "The disintegration of the remains of my dignity."
So far, we have very little new information. I tested positive for orthostatic intolerance. No offense, doctors, but obviously.
Here's whats getting frustrating. Today, we were told we would meet with endocrinology. They did a series of hormone tests. We didn't see any other doctors until 8 pm when endocrinology came in for 5 minutes and gave us absolutely no information. They even tried to say that my symptoms don't present in accordance with normal pituitary abnormalities. So after several rounds of blood work and 48 hours in the hospital, we have actually taken several steps back.
I'm in for another night at least as we wait for labs to come back. I'm on bed rest with a "Fall Risk" tag, IV port, Tele heart monitor, and a BP monitor. It's my first night alone but I have my computer so I'm not too lonely. After a few blog updates and emails, I will escape to the wonderful relief of Netflix.
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