After a long week of trying to convince my dialysis nurse at the clinic that no, wearing a mask is important when your opening up someone's chest catheter, I am now hospitalised with an infection in my blood. This is very familiar to me and I'm not liking it AT ALL. I'm afraid that I will wind up just as I was last year with no hope and in the hospital for weeks on end. The vascular team keeps putting off redoing my AV graft and now they can't touch me until this infection is gone. That can take up to 6-8 weeks!
Thankfully I have a dear friend staying with us that is helping us to keep things straight and the house on some kind of routine. The boys also have their therapists now which is also making things easier.
I'm going to try to get out of this clinic before they kill me, but they are making it difficult and I'm not sure I can work around their hoops.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Saturday, October 15, 2011
Wednesday, December 15, 2010
Update
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
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
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!
Monday, November 29, 2010
Concerns
I've spent this entire hospital stay going from one issue with my health to the next. Thing is, that was OK. I had a great team of doctors that understood me enough to work with me. I was real nervous about the teams switching over, things don't get passed over correctly, they possibly change the entire plan I was comfortable with etc. I let people know my fears. Today the team switched. Every last fear and then some were realized. The Intern, is an arrogant little bitch who after being told that my husband wanted to speak with her and her accepting, came back into the room 5 mins before he gets there (going out of his way, mind you) and tells me that "something came up" and she can't talk to him tonight. She suggests other times, all on the phone (which he hates) and not in person. All were times that I had previously explained to her were times he worked, was doing something else, taking care of the kids etc. When I suggested that this was awfully convenient, she tells me "I didn't even have to let you know this, I could have just gone and not been available." Well, yes I'm sorry yes you did have to tell me. You were canceling an appointment to speak to the spouse of one of your patients.
It's all over now, I've asked to be transferred to a new team of doctors and explained to the nurses that I absolutely will not work with such rudeness. Her plan if she has her way is to get a graft in me (which she is convinced is accessible immediately and the vascular surgeons verified with me for a third time that it indeed is not) get me transferred from a heparin drip and changed over to pill form blood thinners and once my blood is therapeutic send me home. No testing for transplant. No nothing working towards that reality.
Add on top of this that the catheter in my leg is an issue. Say they even find a vein that's good enough (still a big question if they will tomorrow) and the graft isn't usable for a month, this leg catheter causes me so much pain right now that I am regularly crying in pain and require high amounts of pain meds to make it bearable. She's said nothing about this issue. I've brought it up many times today. I'm not getting the answers I need, and I'm not pleased. If I wind up moving on further and this keeps happening tomorrow and/or I don't get transferred to a new team I am going to have to use Condition H (Which is the hospitals lifeline for patients and their family when they think somethings not right and no one else is doing a damned thing about it) I'm not 100% how it works but I will be asking my nurse (who I adore tonight) tonight so I have the information.
As it stands...Looks like I'll be back home in 2-8 days.
Oh; PS to Dr. Amanda who said she would check this blog to see how things went- "You were so wrong about me getting along with this rude, superficial and ill mannered person who seems to think she's going to be a doctor some day. She shouldn't be dealing with people at all in any way. Research maybe...Administration would be even better..then she can be rude and people will just nod and smile since Admin. is filled with hot air and nonsense.
It's all over now, I've asked to be transferred to a new team of doctors and explained to the nurses that I absolutely will not work with such rudeness. Her plan if she has her way is to get a graft in me (which she is convinced is accessible immediately and the vascular surgeons verified with me for a third time that it indeed is not) get me transferred from a heparin drip and changed over to pill form blood thinners and once my blood is therapeutic send me home. No testing for transplant. No nothing working towards that reality.
Add on top of this that the catheter in my leg is an issue. Say they even find a vein that's good enough (still a big question if they will tomorrow) and the graft isn't usable for a month, this leg catheter causes me so much pain right now that I am regularly crying in pain and require high amounts of pain meds to make it bearable. She's said nothing about this issue. I've brought it up many times today. I'm not getting the answers I need, and I'm not pleased. If I wind up moving on further and this keeps happening tomorrow and/or I don't get transferred to a new team I am going to have to use Condition H (Which is the hospitals lifeline for patients and their family when they think somethings not right and no one else is doing a damned thing about it) I'm not 100% how it works but I will be asking my nurse (who I adore tonight) tonight so I have the information.
As it stands...Looks like I'll be back home in 2-8 days.
Oh; PS to Dr. Amanda who said she would check this blog to see how things went- "You were so wrong about me getting along with this rude, superficial and ill mannered person who seems to think she's going to be a doctor some day. She shouldn't be dealing with people at all in any way. Research maybe...Administration would be even better..then she can be rude and people will just nod and smile since Admin. is filled with hot air and nonsense.
Sunday, November 28, 2010
Todays Med Update
Well, last night was fun! (not!) I had a running 100.4 degree fever (I know not very high, but any fever right now is suspect as a sign of sepsis) and some fairly amazing pain and dizziness and after dialysis tachycardia (Fast heart rate). I should perhaps go in order, I get ahead of myself.
Early in the afternoon, I was sitting in bed on my computer and I sat up straighter to ease my back a little and the dialysis catheter..slipped..somehow. It's been annoying and quasi-painful before this but this time it hit something serious. Tears sprang to my eyes and I began bawling with pain. This is not something I do, I am pretty stoic in the face of most pain. So the nurse being a sweetheart stayed by me while she called the doc to get an OK for more pain meds. After what would be enough pain meds to knock out a village, I was mostly comfortable again. I went back to my chat room and putzed around (since doing anything productive that doped up was out of the question)
Eventually they called me for dialysis, being smart I asked for zofran ( an anti-nausea drug) So that I lowered my chances of puking my guts out in the clinic again.After dealing with the most surly patient care techs and got set up, the catheter sputter and bubbled but, in the end they got in a full treatment. As I was leaving the clinic the nurse let me know that my heart rate was too fast, and we sat for a while but it didn't really come down. I eventually went back to my floor and room, and almost passed out in the few steps from wheelchair to bed. Until then, I wasn't aware that it was possible to be dizzy sitting down. I got settled and tried to go about my night.
I had had the feeling longer into the evening that maybe I had a temperature. So, I checked it it was 100.2 , so I called my nurse in and she took blood and I called it a night. When I woke the fever was gone. I hope that the fact that I had even a low grade fever in the last 48 hours won't stand in the way of doing the procedure to my veins Monday. I will have to ask the Doc when they come in sometime today.
Early in the afternoon, I was sitting in bed on my computer and I sat up straighter to ease my back a little and the dialysis catheter..slipped..somehow. It's been annoying and quasi-painful before this but this time it hit something serious. Tears sprang to my eyes and I began bawling with pain. This is not something I do, I am pretty stoic in the face of most pain. So the nurse being a sweetheart stayed by me while she called the doc to get an OK for more pain meds. After what would be enough pain meds to knock out a village, I was mostly comfortable again. I went back to my chat room and putzed around (since doing anything productive that doped up was out of the question)
Eventually they called me for dialysis, being smart I asked for zofran ( an anti-nausea drug) So that I lowered my chances of puking my guts out in the clinic again.After dealing with the most surly patient care techs and got set up, the catheter sputter and bubbled but, in the end they got in a full treatment. As I was leaving the clinic the nurse let me know that my heart rate was too fast, and we sat for a while but it didn't really come down. I eventually went back to my floor and room, and almost passed out in the few steps from wheelchair to bed. Until then, I wasn't aware that it was possible to be dizzy sitting down. I got settled and tried to go about my night.
I had had the feeling longer into the evening that maybe I had a temperature. So, I checked it it was 100.2 , so I called my nurse in and she took blood and I called it a night. When I woke the fever was gone. I hope that the fact that I had even a low grade fever in the last 48 hours won't stand in the way of doing the procedure to my veins Monday. I will have to ask the Doc when they come in sometime today.
Saturday, November 27, 2010
More updates.
So, next week I go in for an exploratory procedure that will show all the veins in my upper chest and how they are. It uses contrast dye not something I'm fond of but oh well. Apparently I need to be put under full sedation for this...I'm not sure why but I have to assume it's a painful operation even though there aren't doing any cutting I don't believe. Before they do that though, they need to speak with the hematologist to perhaps explore why I'm still clotting even on heparin.
Unfortunately, the dialysis catheter I have now is rubbing up against something rather painful and making me quite uncomfortable. They promise to look at it, but I can tell they are more concerned about other things. It irritates me a little because i'd like to start stepping down from my pain meds.
It's really rather strange, each doctor on my team has such different outlooks on the situation. Especially the residents and Interns. One has a no nonsense view and told me flat out I'm here for a while. One seems to think that they can get me to go home (He's the youngest and least experienced) and the specialists are all annoyed at the things done and not done because it's not ideal for -them- and each specialist contradicts the other. So I sit back and wait till all the information comes in and put it together in my head on my own till it makes sense
Testing and meetings and Update
Had the TEE (otherwise known as camera down my throat test) and it revealed that the infection that is growing on my heart is indeed getting smaller. It was almost an inch in size in the beginning, it is now 1/2 inch maybe a little smaller. Doctor Ray (Otherwise known as Dr. Awesome) came in to see me after the vascular surgeon did a quick look over on me. He then gave me the news that really annoyed me.
I'm in here until the antibiotics are done. That's December 15th. It's more likely that I will be in until after the New Year, and just remain through the transplant. It's a long time. I'm wrapping my head around it now, preparing to spend a lot of time in this bed and on this wing.
Now, there is a chance that Vascular surgery will be convinced to do it anyway. No one is thrilled about doing this surgery at all. If that happens who knows what will occur. It will be uncharted ground.
Apparently this is the only test happening today, and the Doctors are going to have a big meeting with all the specialists either today or tomorrow about what courses of action we need to take. One thing is certain though, they will be doing all the work up tests for transplant so that it's ready when the time comes.
More news as it arrives, and a short note about how the family is doing will be coming soon as well.
I'm in here until the antibiotics are done. That's December 15th. It's more likely that I will be in until after the New Year, and just remain through the transplant. It's a long time. I'm wrapping my head around it now, preparing to spend a lot of time in this bed and on this wing.
Now, there is a chance that Vascular surgery will be convinced to do it anyway. No one is thrilled about doing this surgery at all. If that happens who knows what will occur. It will be uncharted ground.
Apparently this is the only test happening today, and the Doctors are going to have a big meeting with all the specialists either today or tomorrow about what courses of action we need to take. One thing is certain though, they will be doing all the work up tests for transplant so that it's ready when the time comes.
More news as it arrives, and a short note about how the family is doing will be coming soon as well.
Thursday, November 25, 2010
Musing
Something in my head broke tonight. Not in a bad way, although it hurt at first. I'm thinking more clearly now than I have since I had gotten sick. Last night my Husband confronted me with the face that I had been holding everything in, being strong for everyone around me and not really internalizing what was happening. He, in short made me cry for the first time since I was hospitalized. Well, first time in front of anyone at least. I learned then that tears shared are healing while tears hidden just hurt you more.
I know what I want my life to look like now if I am given the chance. I had an idea before, but now it's crystal clear. I wish to obtain my addictions certificate and finally begin practicing my art/skill/science on a volunteer basis at my Temple and in my community. I also hope to obtain a job where Rob can choose if he wants to work or remain home with the kids or not. I have very little desire for anything for my self anymore...it's fleeting. The changes I can help others make though, that is lasting.
So, for those who have been keeping track of everything...now you know why I desire to live. At least one of the reasons.
Tomorrow, I wake to something new..something I've not had in a very long time. Purpose. I will undergo all the tests I am given with as much grace as I can and endure what is necessary to see myself a full return to health so that I may complete the work I have known for so long but hesitated at before.
I know what I want my life to look like now if I am given the chance. I had an idea before, but now it's crystal clear. I wish to obtain my addictions certificate and finally begin practicing my art/skill/science on a volunteer basis at my Temple and in my community. I also hope to obtain a job where Rob can choose if he wants to work or remain home with the kids or not. I have very little desire for anything for my self anymore...it's fleeting. The changes I can help others make though, that is lasting.
So, for those who have been keeping track of everything...now you know why I desire to live. At least one of the reasons.
Tomorrow, I wake to something new..something I've not had in a very long time. Purpose. I will undergo all the tests I am given with as much grace as I can and endure what is necessary to see myself a full return to health so that I may complete the work I have known for so long but hesitated at before.
Medical Update
Good morning. Well, I want to get the contact info issues out of the way. I have many places I can be found:
Some folks have pointed out that the carepages site needs a log in. I will be keeping that one going but I will also post on my blogger which is the 3rd thing down on the above list.
Now for the update:
Well, it's thanksgiving so a whole lot of stuff won't be happening. They hope to dialyse me again on Saturday to see how things hold up. The Doctor spoke to Infectious diseases and the gave the go ahead for a graft, now we need to see the folks at Vascular Surgery so they can see if I have veins in my right arm to place the graft in. Thing is this will be tricky, they put a PICC line (perm. IV) in my left arm and my right arm has been a pin cushion. I honestly don't know if they will find access.
Tomorrow (hopefully) they will be doing a TEE Essentially they stick a small camera down my throat while I'm sedated to see if the infection on my heart is getting smaller or not. If it is..great, I'll be OK for transplant eventually in the 2nd week of December.
If it hasn't gotten smaller or if it has grown, then we need to talk to the Cardio-THorasic Surgeons about going in with surgery and taking the infection out by hand.
Also, starting tomorrow and thorough the weekend I will be finishing up my work up for transplant.
So we have two possible paths now.
1: The graft works and remains stable and the infection has not grown or has gotten smaller. Femoral catheter comes out and I get to spend a little time at home before the surgery.
2: The graft isn't reliable or the infection requires surgery, then I remain here for the duration.
Even if I am allowed to go home for a while, I will still essentially be on bed-rest so I don't complicate anything.
=====
People have asked how they can help if donating a kidney is not an option. There are many many things you can do that would help us to not be so stressed out about other things and can focus on this.
- kristen.chesnavich@gmail.com
- Obviously here
- http://oldfashionedmommypgh.blogspot.com/
- YM Kristen.chesnavich
- Twitter KristenChez
- Hospital Montifiore Hospital UPMC : 200 Lothrop Street Pittsburgh, PA 15213 room 1043-1S
Some folks have pointed out that the carepages site needs a log in. I will be keeping that one going but I will also post on my blogger which is the 3rd thing down on the above list.
Now for the update:
Well, it's thanksgiving so a whole lot of stuff won't be happening. They hope to dialyse me again on Saturday to see how things hold up. The Doctor spoke to Infectious diseases and the gave the go ahead for a graft, now we need to see the folks at Vascular Surgery so they can see if I have veins in my right arm to place the graft in. Thing is this will be tricky, they put a PICC line (perm. IV) in my left arm and my right arm has been a pin cushion. I honestly don't know if they will find access.
Tomorrow (hopefully) they will be doing a TEE Essentially they stick a small camera down my throat while I'm sedated to see if the infection on my heart is getting smaller or not. If it is..great, I'll be OK for transplant eventually in the 2nd week of December.
If it hasn't gotten smaller or if it has grown, then we need to talk to the Cardio-THorasic Surgeons about going in with surgery and taking the infection out by hand.
Also, starting tomorrow and thorough the weekend I will be finishing up my work up for transplant.
So we have two possible paths now.
1: The graft works and remains stable and the infection has not grown or has gotten smaller. Femoral catheter comes out and I get to spend a little time at home before the surgery.
2: The graft isn't reliable or the infection requires surgery, then I remain here for the duration.
Even if I am allowed to go home for a while, I will still essentially be on bed-rest so I don't complicate anything.
=====
People have asked how they can help if donating a kidney is not an option. There are many many things you can do that would help us to not be so stressed out about other things and can focus on this.
- Be at my house with Rob..not even kid watching..just another voice so he isn't so frazzled alone
- Childcare
- visiting me or sending cards to help keep my spirits up
- Diapers size 3
- Cash assistance (I hate to even SAY this but Rob's been off of work too much to deal with doctors and what not)
- Assistance with transportation for Rob when nessessary
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