So Saturday night at 11:30 or so we got settled in to our new environs, the Progressive Telemetry Unit.
I came home briefly to feed the cats, but when I got back, Amanda was on her second bag of blood and had just consulted with the first (of 3) hematologist. The woman was very intrigued with Amanda's symptoms, and thought there was somewhat consistent evidence of Leukemia, but that some things didn't really add up.
I stayed with Amanda until nearly 2am before heading home for the night.
By Sunday morning her hemoglobin count was only up to 5, and shortly after I arrived I was told by her nurse that "Neutropenic Precautions" needed to be taken: anyone entering the room would need to wear a gown, gloves, and mask. Her white blood cell count was also very low, and the risk (to her) of infection was too great.
Sadly, I was the only one to wear the space-alien get-up, because Hematologist #2 came in about an hour later and rescinded that order: only thorough hand-washing would be necessary.
He told us that Amanda needed a bone-marrow biopsy, to be scheduled for Monday, along with an echocardiogram, blood-cultures to rule out virus, and a visit from an eye doctor. He told us that he felt her bone marrow was not functioning: no deficiencies (B-12, iron, etc) were causing the blood issues, it simply wasn't being produced. Either the marrow was suppressed, diseased, or had died. He actually (pre-diagnosis) began discussing chemotherapy and transplant considerations.
He also felt that the PTU was not the right place for a patient with Neutropenic issues, so he had her shipped upstairs, to ONCOLOGY. Oh, yeah: that's the kind of thing that helps you sleep at night...
Her nurse was very sad to see her go. Apparently Amanda's a very good patient.
Monday, April 07, 2008
Manda's Sick - Chapter 1: The ER
Saturday afternoon, shortly after 2pm, we strolled in to the ER. Amanda wasn't thrilled about the prospect of being there, of having to leave Alastair, of the potential for being sent home with no real progress or resolution. Her vision was terrible, her color non-existent.
We went through triage fairly quickly. When you come complaining of heart problems and loss of vision, they try to get to you quickly. Nobody wants a dead body in the lobby.
We were called frequently during the first 30 minutes, but then we sat. And waited. And got frustrated. For 3 hours. The ER was so busy they had been closed to ambulances.
The only interruption to our wait was one final call back to the triage area where a nurse drew blood in anticipation of a lengthy set of procedures.
Finally, at 5:20pm, we were called back into the "Major ER". Here we were immediately informed of Amanda's low hemoglobin count, and a doctor came and asked curious questions like, "Do you have Scandanavian in you?" (Seriously: evidently Amanda's got large red blood cells, which is common in the Nordic folks).
This nice doctor informed us that her hemoglobin count was almost certainly the cause of all her other symptoms. He ordered a blood transfusion, told us that he needed to consult with Amanda's PCP before admitting her, and vanished.
Some time around 8pm, a very nice doctor named Iraj Mishrahi came and asked the same battery of questions we'd now heard a few times, expressed the same shock over the lack of prior blood-work, ran her through all her symptoms, poked and prodded her, and informed us that she was being admitted to the Progressive Telemetry Unit.
At 9, we got our first visitors (and dinner!) while still in the ER. By 10 (or maybe earlier, it's getting a bit fuzzy after a couple of days), Amanda was getting her first bag of blood.
We were told that it would take a long time for the admissions process: supervisors had to be notified, departments had to look for empty beds, rooms had to be cleaned, more supervisors notified, and transporters located. It's almost as complicated as some of the procedures, but by 11:30pm (9 hours after arriving at the hospital), she was in the PTU, Room 419.
We went through triage fairly quickly. When you come complaining of heart problems and loss of vision, they try to get to you quickly. Nobody wants a dead body in the lobby.
We were called frequently during the first 30 minutes, but then we sat. And waited. And got frustrated. For 3 hours. The ER was so busy they had been closed to ambulances.
The only interruption to our wait was one final call back to the triage area where a nurse drew blood in anticipation of a lengthy set of procedures.
Finally, at 5:20pm, we were called back into the "Major ER". Here we were immediately informed of Amanda's low hemoglobin count, and a doctor came and asked curious questions like, "Do you have Scandanavian in you?" (Seriously: evidently Amanda's got large red blood cells, which is common in the Nordic folks).
This nice doctor informed us that her hemoglobin count was almost certainly the cause of all her other symptoms. He ordered a blood transfusion, told us that he needed to consult with Amanda's PCP before admitting her, and vanished.
Some time around 8pm, a very nice doctor named Iraj Mishrahi came and asked the same battery of questions we'd now heard a few times, expressed the same shock over the lack of prior blood-work, ran her through all her symptoms, poked and prodded her, and informed us that she was being admitted to the Progressive Telemetry Unit.
At 9, we got our first visitors (and dinner!) while still in the ER. By 10 (or maybe earlier, it's getting a bit fuzzy after a couple of days), Amanda was getting her first bag of blood.
We were told that it would take a long time for the admissions process: supervisors had to be notified, departments had to look for empty beds, rooms had to be cleaned, more supervisors notified, and transporters located. It's almost as complicated as some of the procedures, but by 11:30pm (9 hours after arriving at the hospital), she was in the PTU, Room 419.
Sunday, April 06, 2008
Manda's Sick - Prologue
For about the past 7 weeks, Amanda has been unwell. No, back up: for about the past 8 months, Amanda's been feeling strange.
It began early last Fall with her hearing a curious whooshing sound whenever the house was quiet. She dealt with it for a while, then got irritated and did some research. We found some interesting candidates, like Eustachian Tube Disorder, all sorts of ear infections, and simple allergies. This last, being the easiest to "fix", became the subject of her great interest. She embarked on a thorough cleaning of the house. Grandma clean.
Things seemed to get better, but she occasionally would still complain that she could feel her pulse strongly.
Then in either January or February, she started having more "allergy" symptoms, so she started taking decongestants. Daily. For 3 weeks. I can't take 'em: they make me feel like I'm looking down at the world from about 5 feet above my head. They raise her mother's heart-rate. And she was starting to feel the same way. So she stopped.
A couple of days after coming off the decongestants, we got our first real clue that something was WRONG. The light palpitations and light-headedness continued. After a couple of weeks of this, Amanda was convinced that the 21-day fusillade of decongestants had permanently damaged her. Then came a reasonably warm day: warm enough to go for a nice outdoor run. 10 minutes after heading out the door, she was back, and looking horrible. She said that her heart felt like it was going to burst from her chest, and you could watch the veins pulse in her neck. When asked how far she'd run, she said "two blocks". Bear in mind that she'd been doing 30 - 45 minutes per night on the elliptical up to just a few days prior.
Then she started having more serious palpitations. She couldn't go up the stairs without getting them.
Finally she made an appointment to see a doctor. Her GP referred her to a cardiologist who performed a Nuclear Stress Test and made her wear a Holter Monitor. She then went back to her GP, who said the results showed nothing interesting. He then sent her back to the cardiologist, who scheduled her for an echocardiogram. During all this time (3 weeks of Dr. Tennis Match), nobody ever took any blood.
Last week, she had a fun list of bizarre symptoms: a toe-nail fell off. Just fell off. (Yuck!) We were watching BSG and she started complaining that she couldn't see the action all that well: made me turn down the lights in the room and told me that the show was strangely lighted. Then her left hand started tingling (I made her go take an aspirin immediately!). She got cold sweats. Shivers. Then a 3-day fever.
Finally she began to lose her vision. She'd had a floater for a few days, then a big gray haze settled in on her right eye.
On Friday night she went ghost-gray pale, and her ankles were badly swollen.
Saturday she nearly passed out in the shower, and throughout the day her haze-gray blindness engulfed more of her right eye.
Even so, it took much cajoling to get her to the hospital.
It began early last Fall with her hearing a curious whooshing sound whenever the house was quiet. She dealt with it for a while, then got irritated and did some research. We found some interesting candidates, like Eustachian Tube Disorder, all sorts of ear infections, and simple allergies. This last, being the easiest to "fix", became the subject of her great interest. She embarked on a thorough cleaning of the house. Grandma clean.
Things seemed to get better, but she occasionally would still complain that she could feel her pulse strongly.
Then in either January or February, she started having more "allergy" symptoms, so she started taking decongestants. Daily. For 3 weeks. I can't take 'em: they make me feel like I'm looking down at the world from about 5 feet above my head. They raise her mother's heart-rate. And she was starting to feel the same way. So she stopped.
A couple of days after coming off the decongestants, we got our first real clue that something was WRONG. The light palpitations and light-headedness continued. After a couple of weeks of this, Amanda was convinced that the 21-day fusillade of decongestants had permanently damaged her. Then came a reasonably warm day: warm enough to go for a nice outdoor run. 10 minutes after heading out the door, she was back, and looking horrible. She said that her heart felt like it was going to burst from her chest, and you could watch the veins pulse in her neck. When asked how far she'd run, she said "two blocks". Bear in mind that she'd been doing 30 - 45 minutes per night on the elliptical up to just a few days prior.
Then she started having more serious palpitations. She couldn't go up the stairs without getting them.
Finally she made an appointment to see a doctor. Her GP referred her to a cardiologist who performed a Nuclear Stress Test and made her wear a Holter Monitor. She then went back to her GP, who said the results showed nothing interesting. He then sent her back to the cardiologist, who scheduled her for an echocardiogram. During all this time (3 weeks of Dr. Tennis Match), nobody ever took any blood.
Last week, she had a fun list of bizarre symptoms: a toe-nail fell off. Just fell off. (Yuck!) We were watching BSG and she started complaining that she couldn't see the action all that well: made me turn down the lights in the room and told me that the show was strangely lighted. Then her left hand started tingling (I made her go take an aspirin immediately!). She got cold sweats. Shivers. Then a 3-day fever.
Finally she began to lose her vision. She'd had a floater for a few days, then a big gray haze settled in on her right eye.
On Friday night she went ghost-gray pale, and her ankles were badly swollen.
Saturday she nearly passed out in the shower, and throughout the day her haze-gray blindness engulfed more of her right eye.
Even so, it took much cajoling to get her to the hospital.
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