It’s been a KUMed week. On Wednesday I saw the allergist/rheumatologist/immunologist. I complained that as well as the Zyrtec was working for the hives, it was making me give new meaning to the stereotypes about blondes. Somehow, it seemed as though my brain had left the building.
There was the mistake at work, and other stupid things. I unloaded the dishwasher last week and put the silverware in the wrong drawer. How do you do that and not notice there’s no tray for the silverware?
He decided to take me off the Zyrtec and the Hydroxine (sp?) Kevin gave me for breakthrough hives and try a mixture of three other drugs. So far I’m still on the Zyrtec as I haven’t gotten the clearance from NIH yet, and the minute I stop taking anything I’m a wreck.
I’m a bit skeptical about the mix of drugs, but I’ll try it. He wants to try allegra, which has never worked for me, another drug that seems to be often prescribed for arthritis (probably because of the joint pain) and another drug that seems to be an oral form of albuderol. That might help with the shortness of breath that can come with allergies, but I’m not sure what any of this will do for hives.
The appointment took forever.
It seems like most of my appointments these days take forever. I get the feeling there’s scrambling around behind the scenes trying to figure out what to do with me. Not to mention it now takes me forever to fill out a medical history form. I have to attach my list of medications. They won’t fit on the form.
At the allergy appointment it was pretty clear I was the topic of conversation. First I spent a half hour filling out the medical history form as well as an allergy questionnaire that must be designed to try to figure out what you’ve been exposed to that could impact allergies.
Next a junior doctor appeared and interviewed me for about 20 minutes. I repeated everything I’d just written on the forms (and brought in my symptom log for the trial). Then he disappeared for what seemed like forever.
I sat and sat, and as I did various younger looking people in white coats would venture by, peek their head in the door, say hello, and disappear. As they all left the door open, I heard one of them down the hall say, “She doesn’t look like she has albinism.” Oh man, which one of us is legally blind?
I wanted to jump down the hall and give the “albinism talk” to explain that we don’t all look like the stereotype (although I think I do.)
Finally the guy I came to see showed up. He wrote the scripts and seemed as though he was in a hurry to move on. I’d probably put him behind. I didn’t care. At this point, I’d been sitting there or in the waiting room for an hour and a half, and I wanted to have a conversation. I asked him to explain the thinking behind the scripts.
He seems to think the hives might not be allergy related, but instead auto-immune related. I pointed to my labs from NIH (which I bring to every doctors appointment) where they had tested for every auto-immune thing under the sun. Nevertheless, in so many words the impression I got was – if it walks like a duck, and it quacks like a duck, it might just be a duck.
Then again, there’s the quote I’ve heard medical students get told somewhere in their training – if you hear hooves, don’t assume it’s a horse. It might be a zebra.
Ducks, horses or zebras – what do I have to lose? I’ll try it as long as Kevin doesn’t think it will do any harm.
On Friday I saw the GI doctor. I really liked him.
The appointment before me was either late, or had cancelled (I overheard the people at the front desk talking) so we weren’t rushed.
We had a great conversation about HPS. I was very impressed in that this doctor had apparently pulled my entire medical record from the KUMed system. He knew about my kidney work-up, and since I never even finished filling out the history form, it wasn’t because I’d mentioned it. He also knew I’d seen the allergy guy only a few days before.
The other thing that impressed me was when he asked about Hermansky-Pudlak Syndrome, and I handed him the brochure, he read it over, put it aside, and then asked me about the disorder. I think it’s great that doctors look these things up for themselves, but at the same time, I wonder about how open they are to patient input when on our first meeting they completely overlook the most logical source of information – the one sitting in the exam room.
He’s suggested a pretty mild drug for the diarrhea. Upon questioning some other HPS friends, the drug has never worked for any of them. But, my bowel issues are pretty mild at this stage. It’s worth a shot.
The other thing that greatly impressed me is that he urged me to come back immediately if it didn’t work or if things got worse. And when he did it, he didn’t just turn me over to the mercy of the KUMed bureaucrats that would happily give me an appointment months later. He gave me his card, and his nurse’s card, so that I could get in quickly if I needed to. That makes me feel a lot better.
There was the mistake at work, and other stupid things. I unloaded the dishwasher last week and put the silverware in the wrong drawer. How do you do that and not notice there’s no tray for the silverware?
He decided to take me off the Zyrtec and the Hydroxine (sp?) Kevin gave me for breakthrough hives and try a mixture of three other drugs. So far I’m still on the Zyrtec as I haven’t gotten the clearance from NIH yet, and the minute I stop taking anything I’m a wreck.
I’m a bit skeptical about the mix of drugs, but I’ll try it. He wants to try allegra, which has never worked for me, another drug that seems to be often prescribed for arthritis (probably because of the joint pain) and another drug that seems to be an oral form of albuderol. That might help with the shortness of breath that can come with allergies, but I’m not sure what any of this will do for hives.
The appointment took forever.
It seems like most of my appointments these days take forever. I get the feeling there’s scrambling around behind the scenes trying to figure out what to do with me. Not to mention it now takes me forever to fill out a medical history form. I have to attach my list of medications. They won’t fit on the form.
At the allergy appointment it was pretty clear I was the topic of conversation. First I spent a half hour filling out the medical history form as well as an allergy questionnaire that must be designed to try to figure out what you’ve been exposed to that could impact allergies.
Next a junior doctor appeared and interviewed me for about 20 minutes. I repeated everything I’d just written on the forms (and brought in my symptom log for the trial). Then he disappeared for what seemed like forever.
I sat and sat, and as I did various younger looking people in white coats would venture by, peek their head in the door, say hello, and disappear. As they all left the door open, I heard one of them down the hall say, “She doesn’t look like she has albinism.” Oh man, which one of us is legally blind?
I wanted to jump down the hall and give the “albinism talk” to explain that we don’t all look like the stereotype (although I think I do.)
Finally the guy I came to see showed up. He wrote the scripts and seemed as though he was in a hurry to move on. I’d probably put him behind. I didn’t care. At this point, I’d been sitting there or in the waiting room for an hour and a half, and I wanted to have a conversation. I asked him to explain the thinking behind the scripts.
He seems to think the hives might not be allergy related, but instead auto-immune related. I pointed to my labs from NIH (which I bring to every doctors appointment) where they had tested for every auto-immune thing under the sun. Nevertheless, in so many words the impression I got was – if it walks like a duck, and it quacks like a duck, it might just be a duck.
Then again, there’s the quote I’ve heard medical students get told somewhere in their training – if you hear hooves, don’t assume it’s a horse. It might be a zebra.
Ducks, horses or zebras – what do I have to lose? I’ll try it as long as Kevin doesn’t think it will do any harm.
On Friday I saw the GI doctor. I really liked him.
The appointment before me was either late, or had cancelled (I overheard the people at the front desk talking) so we weren’t rushed.
We had a great conversation about HPS. I was very impressed in that this doctor had apparently pulled my entire medical record from the KUMed system. He knew about my kidney work-up, and since I never even finished filling out the history form, it wasn’t because I’d mentioned it. He also knew I’d seen the allergy guy only a few days before.
The other thing that impressed me was when he asked about Hermansky-Pudlak Syndrome, and I handed him the brochure, he read it over, put it aside, and then asked me about the disorder. I think it’s great that doctors look these things up for themselves, but at the same time, I wonder about how open they are to patient input when on our first meeting they completely overlook the most logical source of information – the one sitting in the exam room.
He’s suggested a pretty mild drug for the diarrhea. Upon questioning some other HPS friends, the drug has never worked for any of them. But, my bowel issues are pretty mild at this stage. It’s worth a shot.
The other thing that greatly impressed me is that he urged me to come back immediately if it didn’t work or if things got worse. And when he did it, he didn’t just turn me over to the mercy of the KUMed bureaucrats that would happily give me an appointment months later. He gave me his card, and his nurse’s card, so that I could get in quickly if I needed to. That makes me feel a lot better.
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