This has been a very long week for me. When I was first diagnosed with Hermansky-Pudlak Syndrome back in 2002 (the official diagnosis as opposed to the very good guess diagnosis back in 1993) one of my concerns about my potential shortened lifespan was my mother.
My mom was a single parent. I’d always assumed that someday, as the eldest daughter etc., it would fall to me to take care of her in her old age. The thing is I’ve never thought of my mom as “getting older.” My mom has always been healthy. I’ve always been the sick one.
It seemed like an issue that was a “someday” sort of thing. As I settled into my HPS diagnosis my view of things sort of shifted. I’ve had a lot of concerns about who would care for me one day, heaven forbid, if my lungs get worse. Mom seemed like a likely candidate.
Now, five years into this (almost six) I’m in the clinical trial and my lungs are excellent. This week was a bit of a wake up call. What if something did happen to my mom? How will I care for her? What would I do if she were critically ill all the way in Germany? And worse, if anything really terrible happened, how would I even know where to start to settle her affairs or take care of those sorts of matters?
My mom is doing well. She’s home now. She has a doctor’s appointment on Monday, after which I hope we have a better idea of what exactly is going on and what the long-term plan will be. She says she feels great, and she sounds very good on the phone. But, we need a plan that’s better than me aimlessly groping around the internet and calling hospitals in “pigeon German” trying to find her and figure out what’s going on.
It struck me as sort of funny today how much my mom has to learn about being a patient. I asked her what medications they’d given her. She went and got them to read them off to me. It hadn’t even occurred to her to get online and look them up. I guess having a wonky bleeding disorder, this is now second nature to me. The names of the drugs were the German names, however. I was able to find a generic name for two of them and then use that name to look them up in English – but the third drug is the mystery drug.
I asked her if she had her questions ready for the doctor on Monday. She said she hadn’t even thought of what to ask. I was baffled. You mean people don’t go to doctor’s appointments with lists? I suggested for starters that she get the chemical names of the meds she’s on so we can look the up and not just get all German Web sites. One of the drugs talked about impacting the thyroid as a possible side effect. “You might want to just ask about that mom,” I told her, “It’s probably fine, but I’d want some reassurance that this won’t be a problem with the way your thyroid medication works.”
Perhaps it’s my second nature, with the laundry list of medical issues I’ve got these days, to feel the need to remind the doctor I’ve got a given problem when I see it on a drug side effect list.
I suggested she ask about any long-term concerns, what she needs to do to keep this from happening again, what signs she should be alert to etc.
Am I just a little too anal perhaps?
My mom was a single parent. I’d always assumed that someday, as the eldest daughter etc., it would fall to me to take care of her in her old age. The thing is I’ve never thought of my mom as “getting older.” My mom has always been healthy. I’ve always been the sick one.
It seemed like an issue that was a “someday” sort of thing. As I settled into my HPS diagnosis my view of things sort of shifted. I’ve had a lot of concerns about who would care for me one day, heaven forbid, if my lungs get worse. Mom seemed like a likely candidate.
Now, five years into this (almost six) I’m in the clinical trial and my lungs are excellent. This week was a bit of a wake up call. What if something did happen to my mom? How will I care for her? What would I do if she were critically ill all the way in Germany? And worse, if anything really terrible happened, how would I even know where to start to settle her affairs or take care of those sorts of matters?
My mom is doing well. She’s home now. She has a doctor’s appointment on Monday, after which I hope we have a better idea of what exactly is going on and what the long-term plan will be. She says she feels great, and she sounds very good on the phone. But, we need a plan that’s better than me aimlessly groping around the internet and calling hospitals in “pigeon German” trying to find her and figure out what’s going on.
It struck me as sort of funny today how much my mom has to learn about being a patient. I asked her what medications they’d given her. She went and got them to read them off to me. It hadn’t even occurred to her to get online and look them up. I guess having a wonky bleeding disorder, this is now second nature to me. The names of the drugs were the German names, however. I was able to find a generic name for two of them and then use that name to look them up in English – but the third drug is the mystery drug.
I asked her if she had her questions ready for the doctor on Monday. She said she hadn’t even thought of what to ask. I was baffled. You mean people don’t go to doctor’s appointments with lists? I suggested for starters that she get the chemical names of the meds she’s on so we can look the up and not just get all German Web sites. One of the drugs talked about impacting the thyroid as a possible side effect. “You might want to just ask about that mom,” I told her, “It’s probably fine, but I’d want some reassurance that this won’t be a problem with the way your thyroid medication works.”
Perhaps it’s my second nature, with the laundry list of medical issues I’ve got these days, to feel the need to remind the doctor I’ve got a given problem when I see it on a drug side effect list.
I suggested she ask about any long-term concerns, what she needs to do to keep this from happening again, what signs she should be alert to etc.
Am I just a little too anal perhaps?
Comments
Hope your Mom is doing OK and the docs can answer some of these questions!