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!
Monday, October 17, 2011
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.
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