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Here We go Again
Jun. 29th, 2021 11:09 pmWell...
This year holds the record so far for hospital trips. I spent from about 6:15pm last night to about 4:30pm today back in the hospital thanks to a high creatinine reading on Monday.
The good things:
We've got everything in getting me into the hospital down to a system.
Everything fits in my CPAP bag, which contains not only everything I need for my breathing machine but also power supplies, extension cords, and even a spare apple corer/slicer because the hospital does some odd things when cutting an apple. Add to that my meds bag and it's all simple and easy to get when it's time to go in.
My kidney seems to be working fine as long as I can get enough fluid to it.
They've managed to figure out how to stick me once and get a good IV in place, both at the hospital and also at the infusion clinic.
In the not so good category:
Going back into the hospital.
One of my meds is not on their formulary, and it's important -- my anti-androgen. So there's been a bit of a song and dance to get it all worked out when I'm dealing with procedure obsessed nurses.
There's also a problem centering around taking blood pressure -- I have one good arm segment for that, my left forearm. They get a bit weird because I've got that access graft in my left bicep, so they try odd things like try to take blood pressure on my calves, which always comes out way high. My right arm has been the site of choice for every stick I've gotten since the access went in a year ago. (pretty much right on the nose a full year as of yesterday or today) so it's agony taking any blood pressure over there, which stresses me out, which raises my blood pressure...
I still have strong psychosomatic reactions to getting punctured by anything. In fact, I'm having the same burning from thinking about it right now.
It's also somehow messed up my concept of what day it is, though I'm coping.
I've got some strategies for dealing with the fluid consumption issues moving forward. And we identified some thresholds I need to hit if I don't want to keep winding up in the hospital again and again. (I don't, of course, because I don't have Factitious Disorder so I don't want to stay in the hospital forever)
In other news, I'm starting the conversations about timetables to deal with "the cactus". I'm sure that's way obscure, so I'll explain.
When I met with the nephrologist at the very beginning of the transplant process he asked me about timetables for my transition surgery. I told him, "I'm from Texas, so I've been taught that you deal with the snakes before you try to dig out the cactus," meaning that end stage kidney disease was venomous snakelike in that it would reach out and kill me, while transition issues were things I didn't want to rub against but they weren't as dangerous as the failure of a major body system. Well, the snakes are managed and not nearly as much a threat, so now I'm starting to want to deal with the cacti on the property. And there's a place in the local area who can deal with that. But I need buy-in from my renal team, so I'm going to get into the topic on next Thursday when I go in for my next set of labs. I've also got a trip to the county courthouse to find out if my half brother filed probate for my dad's estate, and I'm going to ask them if a legal name change will affect anything. I suspect it won't, so I'm going to file for a court date then and get that moving along too. I wish I hadn't wanted so long, but I did and there's nothing for it, so I'm going to not waste anymore time.
So, how y'all?
Nyyki (She/Her/Hers/Miss)
This year holds the record so far for hospital trips. I spent from about 6:15pm last night to about 4:30pm today back in the hospital thanks to a high creatinine reading on Monday.
The good things:
We've got everything in getting me into the hospital down to a system.
Everything fits in my CPAP bag, which contains not only everything I need for my breathing machine but also power supplies, extension cords, and even a spare apple corer/slicer because the hospital does some odd things when cutting an apple. Add to that my meds bag and it's all simple and easy to get when it's time to go in.
My kidney seems to be working fine as long as I can get enough fluid to it.
They've managed to figure out how to stick me once and get a good IV in place, both at the hospital and also at the infusion clinic.
In the not so good category:
Going back into the hospital.
One of my meds is not on their formulary, and it's important -- my anti-androgen. So there's been a bit of a song and dance to get it all worked out when I'm dealing with procedure obsessed nurses.
There's also a problem centering around taking blood pressure -- I have one good arm segment for that, my left forearm. They get a bit weird because I've got that access graft in my left bicep, so they try odd things like try to take blood pressure on my calves, which always comes out way high. My right arm has been the site of choice for every stick I've gotten since the access went in a year ago. (pretty much right on the nose a full year as of yesterday or today) so it's agony taking any blood pressure over there, which stresses me out, which raises my blood pressure...
I still have strong psychosomatic reactions to getting punctured by anything. In fact, I'm having the same burning from thinking about it right now.
It's also somehow messed up my concept of what day it is, though I'm coping.
I've got some strategies for dealing with the fluid consumption issues moving forward. And we identified some thresholds I need to hit if I don't want to keep winding up in the hospital again and again. (I don't, of course, because I don't have Factitious Disorder so I don't want to stay in the hospital forever)
In other news, I'm starting the conversations about timetables to deal with "the cactus". I'm sure that's way obscure, so I'll explain.
When I met with the nephrologist at the very beginning of the transplant process he asked me about timetables for my transition surgery. I told him, "I'm from Texas, so I've been taught that you deal with the snakes before you try to dig out the cactus," meaning that end stage kidney disease was venomous snakelike in that it would reach out and kill me, while transition issues were things I didn't want to rub against but they weren't as dangerous as the failure of a major body system. Well, the snakes are managed and not nearly as much a threat, so now I'm starting to want to deal with the cacti on the property. And there's a place in the local area who can deal with that. But I need buy-in from my renal team, so I'm going to get into the topic on next Thursday when I go in for my next set of labs. I've also got a trip to the county courthouse to find out if my half brother filed probate for my dad's estate, and I'm going to ask them if a legal name change will affect anything. I suspect it won't, so I'm going to file for a court date then and get that moving along too. I wish I hadn't wanted so long, but I did and there's nothing for it, so I'm going to not waste anymore time.
So, how y'all?
Nyyki (She/Her/Hers/Miss)
