Here We go Again
Jun. 29th, 2021 11:09 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
nyykiWell...
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)
no subject
Date: 2021-06-30 06:27 am (UTC)no subject
Date: 2021-06-30 02:08 pm (UTC)Amy, I'm sorry to hear that all this is going on. And your boyfriend's reaction to all this, though understandable because there are lots of people out there who can't handle facing death, it's still not justifiable in my book. I'm going to assume that you've referenced him in some of your posts here and other places? You've got enough going on with having someone else add to your stress level, but then again going it all alone is also stressful, so maybe he'll step up to the plate for you. Is it okay to advocate on your behalf for aid from the non-corporeals I work with? I've noticed some scripture references in some of your posts, and I don't want to create any unwelcome spiritual situations.
Sent from my HAL 9000 in transit to Jupiter
Help, please
Date: 2021-07-01 01:39 am (UTC)Yes please do anything you think you can do to help my situation in the spiritual realm. I’ll do the same for you.
Re: Help, please
Date: 2021-07-01 02:33 am (UTC)Yes, and with the phobia I have about needles (it hurts just to write this, but I need to push through it) it was hellish. Still, I've never been in a situation where I've had to be poisoned to the point where I still live while the thing trying to kill me dies, which is your reality throughout this. And I also get how much it sucks to have to face these things alone. I remember well back in 2008 when you came to visit me in the hospital up in Denton, and it was a powerful source of strength and connection to know that someone was still aware I was around. (2003 didn't have anyone coming to see me, and that caused all kinds of problems with me feeling alone more than I'd ever felt before, because lonely isn't a normal part of my psyche) I'll do everything I can to try to make sure you're around for decades more.
Sent from my HAL 9000 in transit to Jupiter
Re: Help, please
Date: 2021-07-01 02:43 am (UTC)Re: Help, please
Date: 2021-07-02 12:48 am (UTC)Same here. Please report back any changes, especially improvements.
Yay for not having Factitious disorder! The Baron von Munchausen can fuck right off.
Date: 2021-07-01 03:01 pm (UTC)I am good. My date went well, long-distance though it may have been.
If you need verbal support from any other trans girls who have been through or are going through this process, let me know. I know quite a few.
Re: Yay for not having Factitious disorder! The Baron von Munchausen can fuck right off.
Date: 2021-07-01 04:23 pm (UTC)If you know any who happen to be here point them to my journal, I want more folks to read and also want to create a support field. Also, if you know pagan oriented types looking to get healthier, also let me know. A group of very smart folks over on "that other place" put together a good program that I got amazing results from, and I want to start using it again to get these remaining pounds released and get a more balanced health. Also, three liters of water yesterday. It's achievable.
Sent from my HAL 9000 in transit to Jupiter