After being pretty sure Dad had Lyme Disease, the doctors were very confused when the confirmation test came back negative just after I posted that last entry. It took a day or two, but they finally have a 100% accurate, triple-tested answer: cryptococcal menengitis. It's a soil-borne fungal infection in his brain/CSF. The fungus is extremely common, but not usually strong enough to attack someone who isn't immunocompromised (most people with this infection also have AIDS or another immunodeficiency). We think Dad picked it up over the winter while he was sorting through his mineral collection -- covered in dirt and kept in a humid cellar. He's such an unusual case that the doctors are going to write a paper about him.
The meds are working great, he's almost back to his old self, and he should be transferred to rehab next week, assuming the Infectious Disease doctors are satisfied with his progress. Then rehab will get him walking and writing like normal, and he ought to be home by the end of August.
While we're talking about good things, one of the perks of my job (loading trailers for UPS in New Hampshire) is that I get to load outgoing shipments from Harrisville Designs. Last night we got a bunch of big boxes from them going to another familiar name (which I will not reveal, because I don't know whether this shipment is secret or not), and I couldn't keep from scribbling a little note on one of the boxes. I get such a kick out of knowing a bit about both the shipper and the recipient of the packages I load!
Now if only I could make friends with some of the recipients of the boxes from North Country Smokehouse that make my trailer smell like delicious meat on warm nights... hmm.
20 July 2013
08 July 2013
One little tick, one big problem.
It's 2am on a Monday, and I'm in a dark hospital room, tapping away on my laptop. I just took my sister's place at our father's bedside so she can go home and get some sleep. Let me tell you how we got here.
Three months ago, Dad was hiking, writing a book, working on research projects, and sorting through his massive mineral collection to see what he could get rid of. He had a touch of high blood pressure, had been on an injected B12 supplement for years, was having memory lapses more-or-less normal for a 75-year-old, and was largely oblivious to the fact that he probably has Asperger's Syndrome, but was otherwise fairly healthy and active.
At the end of April, something happened. Overnight his gait changed, his word-finding ability took a nosedive, he had balance problems, his stamina plummeted, his memory issues became noticeably worse, and he had trouble keeping food down. It took us three days to convince him that he wasn't just tired, and that he should let us take him to the doctor. The doc, in the course of examining all the other symptoms, listened to his heart, discovered an irregularity, and since it was 5pm on a Friday and he wasn't a cardiologist, told us to take him to the emergency room.
Six hours in the ER, half a bag of saline, two all-purpose doctors, one neurologist, and one med student later, they told us he had neuropathy in his feet and was dehydrated, and that we should take him home and follow up with his regular doctor. Nothing about his heart, nothing about his mental symptoms, and it turned out when we went back to his regular doctor that the neurologist had diagnosed him with vascular dementia and not bothered to tell us.
(Thank you, Hartford Hospital, for being so eager to get rid of him. We'll never bother you again.)
We got referrals to a cardiologist, a neurologist, and a gastrointerologist, and his symptoms remained steady for the next month. We figured, with the sudden onset, that it was probably a stroke or something similar, so spending months following up with specialists seemed a suitable solution.
...until a few weeks ago.
Dad and my sister took their annual trip to Maine, and his symptoms suddenly got worse. He started falling getting out of the car and on stairs, his sense of time became muddled, he couldn't get through a sentence without pausing for minutes to find the right word, and we got scared. I took him grocery shopping when they got back from Maine and ended up having to get a motorized cart for him, and also having to drive it for him because his cognitive abilities and exective functions were suddenly not up to the task that had been easy enough for him two weeks prior.
We called the doctor, said we were taking him directly to the ER (at a different hospital), and expected to spend a couple of days figuring out what was wrong with him.
That was a week and a half ago.
Today, he can't walk without two people holding him. He can't hold himself in a sitting position. More often than not, he can't tell me what my name is. He can't swallow solid food. He thinks he's in a mental hospital. He sometimes thinks we "put [him] in here on purpose." He sleeps about 14 hours a day, in short bursts. He alternates between thinking the doctors are nice people and thinking they're prison wardens or actors in a television production where he's the only "real" person.
My father has Lyme Disease.
One bite from an infected tick did all of this. It turned him from a reasonably functional, very active senior into a delusional, bedridden, confused patient who often doesn't recognize his own family.
Fortunately, antibiotics should clear up most of the symptoms over the next month, but because it took two months from the onset of symptoms to the beginning of treatment, there's potential for some permanent loss of function, and we'll have no idea how much or in what areas until he finishes the course of treatment. He's going to stay in hospital until he's physically and mentally capable of being transferred to a rehab facility (anywhere from a few days to another week or two) where they'll get him walking again, and then he can come home.
So that, friends, is what has me sitting in a hospital room this morning, trying to figure out how to balance my duties and needs as a daughter, sister, caregiver, employee, business owner, friend, girlfriend, and human being without completely burning out. Any and all suggestions/well-wishes/stories welcome, and supportive/healing energy sent in our direction would be much appreciated.
And please, if you go outside, use a tick repellant and check yourself (and your kids/pets, if applicable) for ticks afterwards. Nobody should have to go through this.
***Update: After almost a week of assuming it was Lyme, the confirmation test just came back negative. So we're back to no diagnosis, confused doctors, and no treatment plan. Time to buy a weekly parking pass for the hospital garage.
Three months ago, Dad was hiking, writing a book, working on research projects, and sorting through his massive mineral collection to see what he could get rid of. He had a touch of high blood pressure, had been on an injected B12 supplement for years, was having memory lapses more-or-less normal for a 75-year-old, and was largely oblivious to the fact that he probably has Asperger's Syndrome, but was otherwise fairly healthy and active.
At the end of April, something happened. Overnight his gait changed, his word-finding ability took a nosedive, he had balance problems, his stamina plummeted, his memory issues became noticeably worse, and he had trouble keeping food down. It took us three days to convince him that he wasn't just tired, and that he should let us take him to the doctor. The doc, in the course of examining all the other symptoms, listened to his heart, discovered an irregularity, and since it was 5pm on a Friday and he wasn't a cardiologist, told us to take him to the emergency room.
Six hours in the ER, half a bag of saline, two all-purpose doctors, one neurologist, and one med student later, they told us he had neuropathy in his feet and was dehydrated, and that we should take him home and follow up with his regular doctor. Nothing about his heart, nothing about his mental symptoms, and it turned out when we went back to his regular doctor that the neurologist had diagnosed him with vascular dementia and not bothered to tell us.
(Thank you, Hartford Hospital, for being so eager to get rid of him. We'll never bother you again.)
We got referrals to a cardiologist, a neurologist, and a gastrointerologist, and his symptoms remained steady for the next month. We figured, with the sudden onset, that it was probably a stroke or something similar, so spending months following up with specialists seemed a suitable solution.
...until a few weeks ago.
Dad and my sister took their annual trip to Maine, and his symptoms suddenly got worse. He started falling getting out of the car and on stairs, his sense of time became muddled, he couldn't get through a sentence without pausing for minutes to find the right word, and we got scared. I took him grocery shopping when they got back from Maine and ended up having to get a motorized cart for him, and also having to drive it for him because his cognitive abilities and exective functions were suddenly not up to the task that had been easy enough for him two weeks prior.
We called the doctor, said we were taking him directly to the ER (at a different hospital), and expected to spend a couple of days figuring out what was wrong with him.
That was a week and a half ago.
Today, he can't walk without two people holding him. He can't hold himself in a sitting position. More often than not, he can't tell me what my name is. He can't swallow solid food. He thinks he's in a mental hospital. He sometimes thinks we "put [him] in here on purpose." He sleeps about 14 hours a day, in short bursts. He alternates between thinking the doctors are nice people and thinking they're prison wardens or actors in a television production where he's the only "real" person.
My father has Lyme Disease.
One bite from an infected tick did all of this. It turned him from a reasonably functional, very active senior into a delusional, bedridden, confused patient who often doesn't recognize his own family.
Fortunately, antibiotics should clear up most of the symptoms over the next month, but because it took two months from the onset of symptoms to the beginning of treatment, there's potential for some permanent loss of function, and we'll have no idea how much or in what areas until he finishes the course of treatment. He's going to stay in hospital until he's physically and mentally capable of being transferred to a rehab facility (anywhere from a few days to another week or two) where they'll get him walking again, and then he can come home.
So that, friends, is what has me sitting in a hospital room this morning, trying to figure out how to balance my duties and needs as a daughter, sister, caregiver, employee, business owner, friend, girlfriend, and human being without completely burning out. Any and all suggestions/well-wishes/stories welcome, and supportive/healing energy sent in our direction would be much appreciated.
And please, if you go outside, use a tick repellant and check yourself (and your kids/pets, if applicable) for ticks afterwards. Nobody should have to go through this.
***Update: After almost a week of assuming it was Lyme, the confirmation test just came back negative. So we're back to no diagnosis, confused doctors, and no treatment plan. Time to buy a weekly parking pass for the hospital garage.
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