Well, they think we are out of the woods right now at least. 2 Days ago I have my Vein Graft operation since they did indeed find some veins with using in my lower right arm. The operation took 6 hours and it's only today that I've been sane enough (Read not in too much pain) to write.
The Docs are being rather standoffish, I'm back to not getting real clear answers about much and on Monday it's going to be one hell of a firestorm here if I don't start getting them. I have some concerns about my graft since the incision site is red, swollen (more than the rest of my arm) and hot to the touch as well as being hard. I'm also running a low grade fever and have been since the surgery. To add to the bounty of "Oh, Shit." my PICC line has become dislodged by about 5 inches. The IR team has to replace it.
My old Nephrologist, Jamie had stopped by the other day and Promised that sometime this week he would come by and talk to me about the next steps towards transplant. I hope he's able to keep that promise cause I know he's busy as heck.
Emotionally, I'm doing about as well as you'd expect. Some days are good, some days are bad and some days I just wish I hadn't woken up for that day and just slept past it. I'm still butting heads with Dialysis/Kidney team because they are doing the "We're separate from the rest of you doctors, We're better..We don't have to schedule along side you with our patient and we don't have to share any information with her either." Bull and shit. I finally got one of my docs to part with my kidney blood work values and agree to do so on a regular basis. I can't make informed decisions about my care (or my diet for that fact) without them. In a lot of areas I'm still having to push and argue to get what I consider the best care for me, and it's tiring. Emotional and mentally exhausting. Add to that the sick feeling of just not being right physicially and it's one big ball game of "just shoot me now".
In other news, I want to take a moment to thank all those folks and agencies and ESPECIALLY the folk of Temple Sinai for all the help that you have given my family in this very upsetting and difficult time. I can't even begin to say enough about how awesome people are.
In a day or so, the website : KidneyforKristen.org will be up and will be the new house for all these updates and information. I hope when this is done to expand it to an advocacy group, but that's for the future.
The Docs are being rather standoffish, I'm back to not getting real clear answers about much and on Monday it's going to be one hell of a firestorm here if I don't start getting them. I have some concerns about my graft since the incision site is red, swollen (more than the rest of my arm) and hot to the touch as well as being hard. I'm also running a low grade fever and have been since the surgery. To add to the bounty of "Oh, Shit." my PICC line has become dislodged by about 5 inches. The IR team has to replace it.
My old Nephrologist, Jamie had stopped by the other day and Promised that sometime this week he would come by and talk to me about the next steps towards transplant. I hope he's able to keep that promise cause I know he's busy as heck.
Emotionally, I'm doing about as well as you'd expect. Some days are good, some days are bad and some days I just wish I hadn't woken up for that day and just slept past it. I'm still butting heads with Dialysis/Kidney team because they are doing the "We're separate from the rest of you doctors, We're better..We don't have to schedule along side you with our patient and we don't have to share any information with her either." Bull and shit. I finally got one of my docs to part with my kidney blood work values and agree to do so on a regular basis. I can't make informed decisions about my care (or my diet for that fact) without them. In a lot of areas I'm still having to push and argue to get what I consider the best care for me, and it's tiring. Emotional and mentally exhausting. Add to that the sick feeling of just not being right physicially and it's one big ball game of "just shoot me now".
In other news, I want to take a moment to thank all those folks and agencies and ESPECIALLY the folk of Temple Sinai for all the help that you have given my family in this very upsetting and difficult time. I can't even begin to say enough about how awesome people are.
In a day or so, the website : KidneyforKristen.org will be up and will be the new house for all these updates and information. I hope when this is done to expand it to an advocacy group, but that's for the future.
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