It's 3:28am and no I did not plan to wake up this early. In fact my medication has made me groggy and at this moment I am having trouble not being cross eyed.
Last night I attended church, as usual and I am reminded, that I must live my life as a christian, with zeal and excitement, for as it says in Matthew 25 verse13 "Watch therefore, for you know neither the day nor the hour in which the Son of Man is coming" As a new christian, I am faced with the ENemy's work, because as my guide told me last night, I left his army and this ticked him off, so I am faced with dreams, and moments of panic and sleeplessness for no good reason.
So tonight, when I woke scared for unknown reasons, I got up and turned to my bible and was faced with two scriptures, first Psalm 118 verse 14 "The Lord is my strength and song, And He has become my salvation!"
And so, praying I am reminded that nothing can harm me in the long run, and I can lay my head back to sleep for a few hours and rest in the knowledge that the :Lord my God is keeping me safe. Amen
Monday, July 13, 2015
Sunday, July 12, 2015
Long time, no blog
Life has taken some amazingly strange turns for us over the last few years. I am coming back to this blog after having my house burn down, having had many surgeries, having been homeless for two years, a move to Colorado and finally a settling in Alamosa, Co. Oh, also, I had wandered into a church recently, and I have been saved! God is Good! So the focus of this blog will be far more Christian, especially as I come to learn my faith and what it requires.
Also, there will be a focus on homeschooling. Due to a distinct dislike of the services available for disabled children in this school district my husband and I have decided that homeschooling is by far a better option for our children than anything else available right now. Don't get me wrong, I really enjoy the small farming community that we have joined, it's just that some of our needs for the children are not met within the current school system. Aleksey is now 6 years old and learning to accept something like a routine (being homeless in the desert for 2 years will make routines go out the window!) and Elijah is now 5 and we are battling the "I know everything" attitude that comes with this age.
Health-wise, I am doing better than I have been in a long time, despite developing epilepsy. My husband feels that things are stable enough for him to finally seek a part time job. We haven't had that kind of stability in over 5 years. It's an amazing this really, how far we've come as a couple, as parents and as individuals. We've faced more struggles than I feel is fair for our lifetime, and here we are, defeating each and every one of them with grace and strength. Now if I could only stop smoking.
Also, there will be a focus on homeschooling. Due to a distinct dislike of the services available for disabled children in this school district my husband and I have decided that homeschooling is by far a better option for our children than anything else available right now. Don't get me wrong, I really enjoy the small farming community that we have joined, it's just that some of our needs for the children are not met within the current school system. Aleksey is now 6 years old and learning to accept something like a routine (being homeless in the desert for 2 years will make routines go out the window!) and Elijah is now 5 and we are battling the "I know everything" attitude that comes with this age.
Health-wise, I am doing better than I have been in a long time, despite developing epilepsy. My husband feels that things are stable enough for him to finally seek a part time job. We haven't had that kind of stability in over 5 years. It's an amazing this really, how far we've come as a couple, as parents and as individuals. We've faced more struggles than I feel is fair for our lifetime, and here we are, defeating each and every one of them with grace and strength. Now if I could only stop smoking.
Tuesday, February 21, 2012
This blog is going to take a new turn...
I've had a hard time lately posting because I have either been very ill or busy with my kiddos. Since my last post, my sons have been diagnosed with Autism (Aleksey) and Aspergers syndrome (Elijah). For the foreseeable future, this blog will feature mostly my trials and tribulations as a disabled mom with 2 "differently-abled" children.
Monday, October 17, 2011
Surgery tomorrow
Tomorrow I have surgery for a fistula placement. This is essentially is super-vein that can stand up to being poked. A lot. I have to admit, I'm nervous about the operation because I will be under General anesthesia and the last time this happened I was in an amazing amount of pain for a while afterwards, and they had forgotten to give me a pain pump. I am taking steps to make sure that this does not happen again but I'm still leery. I've never had a fistula mature, ever. *sigh*
I am enjoying my chocolate pudding and my ginger-ale, because in 5 mins, I will not be allowed to eat or drink -anything- because of the surgery. Wish me luck!
I am enjoying my chocolate pudding and my ginger-ale, because in 5 mins, I will not be allowed to eat or drink -anything- because of the surgery. Wish me luck!
Saturday, October 15, 2011
In the hospital again
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.
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.
Saturday, October 8, 2011
Huge update and a promise
OK so once again it's been forever since I've updated. For those who have been following along, I had an AV graft put in last November, almost a year ago now. Unfortunately, about 3 weeks ago it clotted off after I had a hospital stay battling a disease called C. Diff.
So, back it was to a chest catheter and all the attendant dangers of it. When I was released from the hospital after it was put it, it was already showing signs of not wanting to work. 2 sessions at my clinic later and it was not working again and back to the hospital for me. During the in between time, I was diagnosed with Lupus and Fibromialgya and had been experiencing a terrible flare of both at once. I could barely move. When I was admitted this time, to once again replace the catheter I took a fall when I was transferring from the transport chair to my bed after a test. I heard a terrible *crunch* and I couldn't get up. My spine as given up. It was the consistency of pancake batter. I was then given a walker to walk short distances with and a wheelchair for longer distances.
When the physical therapist came to see me at my home, they confirmed that they don't really want me out of the chair for much of anything. My strength is nothing and my balance is worse than that. So, I now see physical therapy in my home 2 days a week an and occupational therapist who is helping me to learn how to maneuver myself around. Honestly, I'm not upset although most people expected me to be. I have more freedom of movement and I'm in less pain over all. The biggest hurdle we have to get over is how do we modify a 3 story home so that it's mostly accessible to me? The stairs leading to the outside are the biggest issue but have the clearest answer: Build a ramp. So I am making jewelery and things to sell on Etsy all of the proceeds go to my having the materials to build a ramp.
If you wish to purchase something from me please visit my Etsy Store
And now a promise. I will update this blog once a week at least.
So, back it was to a chest catheter and all the attendant dangers of it. When I was released from the hospital after it was put it, it was already showing signs of not wanting to work. 2 sessions at my clinic later and it was not working again and back to the hospital for me. During the in between time, I was diagnosed with Lupus and Fibromialgya and had been experiencing a terrible flare of both at once. I could barely move. When I was admitted this time, to once again replace the catheter I took a fall when I was transferring from the transport chair to my bed after a test. I heard a terrible *crunch* and I couldn't get up. My spine as given up. It was the consistency of pancake batter. I was then given a walker to walk short distances with and a wheelchair for longer distances.
When the physical therapist came to see me at my home, they confirmed that they don't really want me out of the chair for much of anything. My strength is nothing and my balance is worse than that. So, I now see physical therapy in my home 2 days a week an and occupational therapist who is helping me to learn how to maneuver myself around. Honestly, I'm not upset although most people expected me to be. I have more freedom of movement and I'm in less pain over all. The biggest hurdle we have to get over is how do we modify a 3 story home so that it's mostly accessible to me? The stairs leading to the outside are the biggest issue but have the clearest answer: Build a ramp. So I am making jewelery and things to sell on Etsy all of the proceeds go to my having the materials to build a ramp.
If you wish to purchase something from me please visit my Etsy Store
And now a promise. I will update this blog once a week at least.
Friday, August 12, 2011
So lets see...
Ok, Ok I know ti's been a while. Since we last spoke they have closed and then re opened the living donor program and my kids have been put on Gluten and casein free diets. I've been doing OK with dialysis since the graft and I've dropped out of school in order to be at home full time while the kids have their therapies and doctors appointments. I would say to look forward ot more postings by me, but we all know how that works.
Saturday, May 14, 2011
Sunday, March 6, 2011
Something many people have asked me about
People have asked me what it is like, living with Kidney Disease. I've never really been able to give a good answer until now. While the person who wrote this is writing from the perspective of being someone who has Lupus, it goes just the same for ESRD.
http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
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Monday, February 21, 2011
It's been awhile..
There's not a whole lot medicially to report, except that things are rather status quo. I've been going to class (no matter how boring intro to computers really is...) and to dialysis (no matter how much I hate getting stabbed with a 15 guage needle...) and doing as best as I can. It's been busy around here and I'm trying ot make room for a lot of things. I have however, begun crafting again and I am extemely excited about some of the ideas I have come up with. As soon as I am done with my first project, it is my hope to post pictures here.
For now though, I will say..I am happy, healthy and busy..and I wouldn't have it any other way.
Monday, January 31, 2011
Medical Update
I got a lot of great news! First of all the medical stuff:
I got a phone call from my transplant coordinator and we set up my final tests to finish my profile to give to the transplant team.
My Sister in soul- Ng got a call from my Transplant coordinator as well. I don't know what it entailed, I didn't think to ask, but the fact that she got a call back means I am that much closer to being done with all this!
Now for school: I currently have a 4.0 and perfect attendance. I am also one of the class leaders it seems. I guess there is something to be said for being immensely reliable. I am planning the schools Criminal Justice social for late this spring/early summer and planning on joining the Criminal justice club and becoming a tutor.
Yes, I am doing a whole hell of a lot, but just let me say this: After so many many months of being completely inactive, this feels really good. I'm being productive and working towards a career which is something I've never had.
I've been immensely lucky while all this has been going on, I feel really good. I'm on overnight dialysis now, and it's working better than I ever had any right to think it would. It's easier on my body and I sleep fairly well while I'm there.
I hope to be updating more often than I have been, but life being what it is, I can't promise that right now.
I got a phone call from my transplant coordinator and we set up my final tests to finish my profile to give to the transplant team.
My Sister in soul- Ng got a call from my Transplant coordinator as well. I don't know what it entailed, I didn't think to ask, but the fact that she got a call back means I am that much closer to being done with all this!
Now for school: I currently have a 4.0 and perfect attendance. I am also one of the class leaders it seems. I guess there is something to be said for being immensely reliable. I am planning the schools Criminal Justice social for late this spring/early summer and planning on joining the Criminal justice club and becoming a tutor.
Yes, I am doing a whole hell of a lot, but just let me say this: After so many many months of being completely inactive, this feels really good. I'm being productive and working towards a career which is something I've never had.
I've been immensely lucky while all this has been going on, I feel really good. I'm on overnight dialysis now, and it's working better than I ever had any right to think it would. It's easier on my body and I sleep fairly well while I'm there.
I hope to be updating more often than I have been, but life being what it is, I can't promise that right now.
Saturday, January 15, 2011
Medical Update
It's been a while since I've posted a medical update, and I apologize for that. Things have been rather crazy, but in a good way lately.
After I was released from the hospital on December 8th I was the new owner of an AV graft, that is a small tube in my right forearm connected to a vein and an artery. This allows for the dialysis needles to enter both sides and draw blood and cleanse it more efficiently. The surgery was long and the healing painful, but it was finally ready 4 weeks later. In the intervening time I was again hospitalized with another catheter infection, however lucky me! The infections never left the catheter. So, thankfully they just pulled it out and that was that. I had been having some neurological symptoms, however over time they seem to have cleared up. I honestly believe it was because of the ineffectiveness of the catheter that caused them.
So, the New Year came and went and the access is holding up -beautifully-. It's doing well enough that I have returned to college and am now on the overnight dialysis unit where I go in at 9pm and sleep there while the machine runs until 6am or so then go home.
I cannot thank the many friends and family members who have worked to assist us in our time of need over this past holiday season, and I know that I can never ever repay that generosity except to keep paying it forward as I try to do always. I know that should anyone ever be in need..if I can help Tell Me. I will.
I will be posting a more personal update tomorrow about how life is going outside of medical things, as well as pics of the kids ;) Stay tuned.
After I was released from the hospital on December 8th I was the new owner of an AV graft, that is a small tube in my right forearm connected to a vein and an artery. This allows for the dialysis needles to enter both sides and draw blood and cleanse it more efficiently. The surgery was long and the healing painful, but it was finally ready 4 weeks later. In the intervening time I was again hospitalized with another catheter infection, however lucky me! The infections never left the catheter. So, thankfully they just pulled it out and that was that. I had been having some neurological symptoms, however over time they seem to have cleared up. I honestly believe it was because of the ineffectiveness of the catheter that caused them.
So, the New Year came and went and the access is holding up -beautifully-. It's doing well enough that I have returned to college and am now on the overnight dialysis unit where I go in at 9pm and sleep there while the machine runs until 6am or so then go home.
I cannot thank the many friends and family members who have worked to assist us in our time of need over this past holiday season, and I know that I can never ever repay that generosity except to keep paying it forward as I try to do always. I know that should anyone ever be in need..if I can help Tell Me. I will.
I will be posting a more personal update tomorrow about how life is going outside of medical things, as well as pics of the kids ;) Stay tuned.
Friday, January 7, 2011
Once again it's been a while
However, I feel that things have gotten stable enough to really say that they are getting -better-. I spent only a few more days in the hospital right before new years and then returned home. My AV graft is working beautifully and I am feeling better and stronger all the time. New Years eve for me heralded in a new perspective for me and a chance at living a life again.
My DH was told when he returned after the holidays that he would be a permanent solution to their problems so any concern we had about weather or not we needed to be looking for a new position for him this year are gone. What a friggin relief that is! It has been since the beginning of our relationship back in 07 that He was laid off from work and had not had a long term position since then. It's been going from one temp assignment to the next, one seasonal job to the next. It was making us both very crazy. Knowing now that he is somewhere that he is needed and also that it is some place that he truly -enjoys- for a chance is making us both feel much more stable.
I also have made a change. I've gone back to school. After a vision a dear friend had about my becoming a private investigator. I've taken it a step further and have enrolled at Kaplan University downtown for criminal justice. I'm having an amazing time, it seems like this is exactly what I am supposed to be doing. My mind feels stretched and used and I am more peaceful than I have been in forever.
Amazingly enough the housework is still getting done and dinner is on the table. I'm not feeling rushed or over worked in any way.
~THank You, G-d for bringing me peace.
My DH was told when he returned after the holidays that he would be a permanent solution to their problems so any concern we had about weather or not we needed to be looking for a new position for him this year are gone. What a friggin relief that is! It has been since the beginning of our relationship back in 07 that He was laid off from work and had not had a long term position since then. It's been going from one temp assignment to the next, one seasonal job to the next. It was making us both very crazy. Knowing now that he is somewhere that he is needed and also that it is some place that he truly -enjoys- for a chance is making us both feel much more stable.
I also have made a change. I've gone back to school. After a vision a dear friend had about my becoming a private investigator. I've taken it a step further and have enrolled at Kaplan University downtown for criminal justice. I'm having an amazing time, it seems like this is exactly what I am supposed to be doing. My mind feels stretched and used and I am more peaceful than I have been in forever.
Amazingly enough the housework is still getting done and dinner is on the table. I'm not feeling rushed or over worked in any way.
~THank You, G-d for bringing me peace.
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
Transplant and Time and Illness
So many people have reached out in an effort to assist my family and I while I am going through this issue. I've also seen the eagerness in some of them. I know you are eager, folks however there are somethings about transplant you need to know. (especially on my case)
- I have Endocarditis, which is an infection on my heart. I cannot even be listed as available for transplant until they are finished with the Antibiotics and the TEE (camera down my throat to look at my heart test) is clean. The reason is, if this infection is not cleared up it will infect the new organ and because I will be on Immune Suppressants and any infection while on those could kill me.
- While I have this infection, I have been going through my "work up" which is a bunch of tests checking just about every major system in my body to make sure there isn't any further damage we didn't know about. At this point, I only have one or two tests to have.
- Using this time (For potential donors) to get your own workups done is a great and valuable thing. It will make sure that whoever winds up as a donor is ready when I am leaving no gap for something else to occur.
- For those who wish to be living donors, you have no idea what a wonderful gift you are giving me, however meeting the guidelines is so very important as is making sure you are patient while we ride through the process together.
- It is also a rule/law that you be over 18 to donate to me. I have seen some people on various bulletin boards saying things about wanting to, but can't tell their parents because they would say no. If you are of an age where you have to listen to your parents legally, then there is no way you can donate yet. I'm sorry , but if you still want to help me feel better, I love getting cards and letters.
- I highly suggest potential donors read this website: http://www.livingdonorsonline.org/ It has wonderful current information and answers questions you might have concisely.
- There is an issue of cost to also keep in mind. Insurance covers the cost of the medical stuff, however there will be time off from work and the bills, they don't stop because your a saint and gave up an organ (not being sarcastic here, I really think anyone who does this is a saint) To help with that, my family and I have set up a guest room in our home for the donor to come back to and recover. Meals etc will be provided. We are currently working on figuring out some fundraiser to assist the donor with expenses.
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
Personal Update
I know I've not been so good about posting more than just the facts. I'm going to try to be better about that. I'm doing OK enough morale wise so far, the news that I'm here for the long term wasn't something I had not already expected, even before the doctors said as much. I've been spending most of my time being completely overawed by the help that everyone is giving me and my family, and really we couldn't do this without the help we've been granted. Even still...it amazes me.
People have been asking for my contact info/address etc so that they can send care packages and cards and what not and others have been asking for the main house address so they can send assistance there. I will be putting up a simple webpage today with all that information as well as a paypal link. Some folks are insisting beyond my protests of sending cash assistance. I won't say it isn't needed or that it isn't appreciated immensely..I guess I still have some remnants of pride left.
What I will definitely be doing though is organizing the names and addresses of those who are assisting, getting tested etc and sending out cards and personal letters and what not. I seriously enjoy that type of activity and think that everyone enjoys getting a letter or a card in the mail now and again in this world of instant everything (especially instant communications).
Also, thanks to the ideas of some of the folks on facebook, I'm going to start a fundraising campaign for the person who eventually becomes the donor. The medical expenses are taken care of, however there's recovery time and lost work to consider. It's the least I can do to help things along and take care of the people who have helped me and my family.
Well, I guess that's about it for now, I will be writing one more bit on the donor process since a few folks seem to have some serious misconceptions.
Once again though, I am sending out a huge "thank you" and a huge hug to everyone who is pulling for me. It helps me to remain strong and helpful!
People have been asking for my contact info/address etc so that they can send care packages and cards and what not and others have been asking for the main house address so they can send assistance there. I will be putting up a simple webpage today with all that information as well as a paypal link. Some folks are insisting beyond my protests of sending cash assistance. I won't say it isn't needed or that it isn't appreciated immensely..I guess I still have some remnants of pride left.
What I will definitely be doing though is organizing the names and addresses of those who are assisting, getting tested etc and sending out cards and personal letters and what not. I seriously enjoy that type of activity and think that everyone enjoys getting a letter or a card in the mail now and again in this world of instant everything (especially instant communications).
Also, thanks to the ideas of some of the folks on facebook, I'm going to start a fundraising campaign for the person who eventually becomes the donor. The medical expenses are taken care of, however there's recovery time and lost work to consider. It's the least I can do to help things along and take care of the people who have helped me and my family.
Well, I guess that's about it for now, I will be writing one more bit on the donor process since a few folks seem to have some serious misconceptions.
Once again though, I am sending out a huge "thank you" and a huge hug to everyone who is pulling for me. It helps me to remain strong and helpful!
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