Ok, it's been a week since I've been sent home from the hospital, things got rather crazy while I was readjusting to life at home. There were several issues waiting for me when I got there, a broken pipe that required a plumber to be called, getting used to the kids therapy scheduel again and all the other things that come with having a home that's been pretty much unattended by you for almost a month. I'm not saying that the menfolk didn't do a good job, cause they did wonderfully so. It's just..I prefer to do things a certain way. They don't do them that way...any other housewife out there probably knows what I mean.
So, I've been sent home with plenty of instructions and medications and things seem to be stable. Today I -did- have to go to the ER because my picc line came out of my body and required replacing. I was wonderfully sent home afterwards. I arrived there with an overnight bag, just assuming that for some reason I would be sent to the floor in the inpaitent wing. I have never been so glad to be wrong.
Readjusting to dialysis hasn't been easy, I've lost so much weight in the hospital that my "dry weight" has to be redetermined. This means that every other day until it's gotten right I spend my dialysis time throwing up and cramping, I get home and collapse.
There's been some family stress as well, DH and I had a prety severe (for us) argument last sunday that left us both feeling washed out and unhappy. It was resolved by the next day's lunch time (which I made darn sure that I met him at work for as a suprise) Learning to do everything again and taking the time to try to de-stress and all of it has been a learning experiance. As such I cherish it, even the hard times.
I miss the times when I knew for certain that I'd be home, and that things would/could run like clockwork provided that nothing huge happened to derail us. Now, every other day I wake at 5:30am, go to dialysis and live in fear the whole time even dreaming about being admitted to the hospital while there (because I do everything in my power to sleep through the sessions) and then hopefully..come home and breathe a prayer of thanks for being able to return.
I have been thinking about christmas eve (We celebrate both since DH is christian) and I have this menu in mind that I desire more than anything to create. I've got the recipies and I've made the shopping list but I'm almost afraid to go and get the things nesessary to make it happen. It requires a lot of prep, and most of it could be done this week and the entire week before christmas so that I'm only steaming, baking, and roasting on christmas eve proper. But, I'm afraid. I'm afraid that I will do this and the prep will be for nothing because I will be in the hospital and the things I prepped will go bad because they had a limited shelf life. (For example, the liver paste for the beef wellington)
On the other hand, the part of me that's not afraid is chom[ing at the bit to get it done so that we can have a romantic christmas eve with all the traditional food and mulled wine my overly traditional and idealistic mind can encompass. I'm trying with everything inside me to hold onto this part of me. As I was taught/learned/relearned this weekend...Faith manages. So...I hold on and I make my prep list and I try to get the house to a point where I know that we can sit and enjoy.
With Faith and Joy,
Kristen
Wednesday, December 15, 2010
Saturday, December 4, 2010
Catching Up
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.
Wednesday, December 1, 2010
A fistfull of updates
First, I apologize for the lack of updates in the past few days, it has really been that crazy. As you saw on Monday I got introduced to the WONDERFUL Resident, Anna Donnovan who seems to think that because she's almost a doctor she doesn't have to have manners. Anyhow, Monday was just terrible...Doctor disrespecting me and my husband and generally in a lot of pain. The only good thing I think that occurred was she -did- listen to me when I told (and showed) her that my hives were back and she increased my benedryl.
So, Tuesday I had surgery to see what veins I had in my upper body that are still usable. I didn't think that they would find anything honestly, but it was worth a try. So, I got myself ready..nothing by mouth after midnight (Which in a dry air environment is torture, if you hadn't known) and waited until they called me, armed with a dose of pain med and a dose of no itch med so I didn't itch and scratch my way off of the operating room table.
I get there and I find out that I'm to be under sedation not general anesthesia. This is my first warning bell or should have been. I alerted them that I signed consent for general and I preferred it because I know that i am hard to dose with sedation meds. My words fell on deaf ears..except the part of course of having signed the wrong consent..so they brought the right one and had me sign it. Sighing, because I know this isn't going to go well they proceed with sticking me with more IV's since my PICC does extend to the right places. I get medicine that's supposed to put me "to sleep" but able to answer simple commands. At about the 1/2 way point, I wake up..like..really my arms are covered in blood and I scream, freaking out. They then hit me with a dose so hard I fell instantly out again. When I was awake, I was on my way to my room and got to the nurses station and (From this point on I am going on what I am told because I blacked out) I apparently leaped out of the stretcher and ran into my room and proceeded to have a nervous breakdown of some sort.
It must have gone OK enough because no one has said anything poorly of the situation. I managed to get dialysis pushed off until later that night since i just could not handle back to back stuff like that and rested a bit. When I did go to dialysis they looked at my catheter and said "well, that needs to be replaced". Yours kidding me right?! *sigh* so the cuff that is supposed to form a seal so bacteria can't get in and so that the catheter itself can't just fall out was sitting outside my body. It never got situated into my body.
SO fast forward to today, I go to IR (Interventional radiology) and they look at it..then take xrays of it and work on it. They get one out and a new one in and I hear from the Doc "Oh shit." They nicked an artery. I tried to remain calm while they fixed that and somehow they either gave me too much meds to keep me calm or something..I blacked out and my stats dropped. I woke to having an oxygen mask on my face. So they got a second catheter,,since the first one they put in me wasn't working right and apparently there is this second type that should work better. It took FOREVER because a tech had to go all over the hospital to find one. There was ONE left. Period. He got it and it was put inside me and that was that. 3 hours later. On a procedure that should have taken 10 mins.
So, It snow this afternoon, and I'm resting coming down from the day and I am told that indeed tomorrow will be the day that they put in graft and it's all coming together. From that point forward, noone seems to really have a concrete plan!
I will write more as I know it!
So, Tuesday I had surgery to see what veins I had in my upper body that are still usable. I didn't think that they would find anything honestly, but it was worth a try. So, I got myself ready..nothing by mouth after midnight (Which in a dry air environment is torture, if you hadn't known) and waited until they called me, armed with a dose of pain med and a dose of no itch med so I didn't itch and scratch my way off of the operating room table.
I get there and I find out that I'm to be under sedation not general anesthesia. This is my first warning bell or should have been. I alerted them that I signed consent for general and I preferred it because I know that i am hard to dose with sedation meds. My words fell on deaf ears..except the part of course of having signed the wrong consent..so they brought the right one and had me sign it. Sighing, because I know this isn't going to go well they proceed with sticking me with more IV's since my PICC does extend to the right places. I get medicine that's supposed to put me "to sleep" but able to answer simple commands. At about the 1/2 way point, I wake up..like..really my arms are covered in blood and I scream, freaking out. They then hit me with a dose so hard I fell instantly out again. When I was awake, I was on my way to my room and got to the nurses station and (From this point on I am going on what I am told because I blacked out) I apparently leaped out of the stretcher and ran into my room and proceeded to have a nervous breakdown of some sort.
It must have gone OK enough because no one has said anything poorly of the situation. I managed to get dialysis pushed off until later that night since i just could not handle back to back stuff like that and rested a bit. When I did go to dialysis they looked at my catheter and said "well, that needs to be replaced". Yours kidding me right?! *sigh* so the cuff that is supposed to form a seal so bacteria can't get in and so that the catheter itself can't just fall out was sitting outside my body. It never got situated into my body.
SO fast forward to today, I go to IR (Interventional radiology) and they look at it..then take xrays of it and work on it. They get one out and a new one in and I hear from the Doc "Oh shit." They nicked an artery. I tried to remain calm while they fixed that and somehow they either gave me too much meds to keep me calm or something..I blacked out and my stats dropped. I woke to having an oxygen mask on my face. So they got a second catheter,,since the first one they put in me wasn't working right and apparently there is this second type that should work better. It took FOREVER because a tech had to go all over the hospital to find one. There was ONE left. Period. He got it and it was put inside me and that was that. 3 hours later. On a procedure that should have taken 10 mins.
So, It snow this afternoon, and I'm resting coming down from the day and I am told that indeed tomorrow will be the day that they put in graft and it's all coming together. From that point forward, noone seems to really have a concrete plan!
I will write more as I know it!
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