Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Cy, It's good to be remembered. They recently put me on enalapril and it raised my creatine a little too, so I'm kinda fresh off a scare for that kind of thing. I've been on 75mg 2x a day for about a year now. They keep trying to raise it and I won't let them because I get the shakes at 100mg. I've been on the same dose for a year and i've been fine so far they have let me stay with it. I'm normally a good obediant patient, but this is one of the few things I fight for. How are you doing? > JASON!!!! > > Boy it is good to hear from you! That artificial inflation of creatinine > can be scary. Back when was on it, his creatinine more than doubled. > Since he was so newly diagnosed and nobody had a feel for how stable he was, > it was very scary. > > Congrats on getting the neoral down to 75mg twice a day. Do you have any > problems with that kind of dose? > > Cy > > > In a message dated 2/18/2005 11:41:48 P.M. Pacific Standard Time, > > sixteneighty@y... writes: > > > > > > > > , > > > > My name is and I had a TX in April 03. I had the same reaction > > most every tranplant patient has to being told there is a stent in > > your bladder, first " WHAT!! " second " I don't know how you think you > > are gonna get that thing out, but it's sure not gonna be that way... " > > I think it's pretty much standard procedure to help keep the kidney > > attached to the bladder while it heals. > > > > As far as the neoral, everyone metabolizes it at a different pace so > > they check for the level of it in your blood and try to keep it at a > > certain place. Neoral is nephrotoxic so it hurts your kidneys to some > > degree so they try to keep it at a minimum. Neoral levels being too > > high can artifically inflate your creatine numbers as well as make > > your hands shake. It's perfectly normal for them to adjust it for the > > first 6 months to a year until everything is settled. My neoral level > > is currently 75mg 2x a day and I think I started at 225mg right after > > the tx. Every hospital has different targets and procedures so it's no > > telling where yours will end up. > > > > I went back to work about 5 weeks after my transplant, but I wasn't on > > SSD and worked through dialysis and everything so all I had to have > > was a dr's note to return. I know it's all new and kinda weird. Almost > > two years out I still jump whenever they call to tell me to change a > > med or repeat a lab. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Cy, It's good to be remembered. They recently put me on enalapril and it raised my creatine a little too, so I'm kinda fresh off a scare for that kind of thing. I've been on 75mg 2x a day for about a year now. They keep trying to raise it and I won't let them because I get the shakes at 100mg. I've been on the same dose for a year and i've been fine so far they have let me stay with it. I'm normally a good obediant patient, but this is one of the few things I fight for. How are you doing? > JASON!!!! > > Boy it is good to hear from you! That artificial inflation of creatinine > can be scary. Back when was on it, his creatinine more than doubled. > Since he was so newly diagnosed and nobody had a feel for how stable he was, > it was very scary. > > Congrats on getting the neoral down to 75mg twice a day. Do you have any > problems with that kind of dose? > > Cy > > > In a message dated 2/18/2005 11:41:48 P.M. Pacific Standard Time, > > sixteneighty@y... writes: > > > > > > > > , > > > > My name is and I had a TX in April 03. I had the same reaction > > most every tranplant patient has to being told there is a stent in > > your bladder, first " WHAT!! " second " I don't know how you think you > > are gonna get that thing out, but it's sure not gonna be that way... " > > I think it's pretty much standard procedure to help keep the kidney > > attached to the bladder while it heals. > > > > As far as the neoral, everyone metabolizes it at a different pace so > > they check for the level of it in your blood and try to keep it at a > > certain place. Neoral is nephrotoxic so it hurts your kidneys to some > > degree so they try to keep it at a minimum. Neoral levels being too > > high can artifically inflate your creatine numbers as well as make > > your hands shake. It's perfectly normal for them to adjust it for the > > first 6 months to a year until everything is settled. My neoral level > > is currently 75mg 2x a day and I think I started at 225mg right after > > the tx. Every hospital has different targets and procedures so it's no > > telling where yours will end up. > > > > I went back to work about 5 weeks after my transplant, but I wasn't on > > SSD and worked through dialysis and everything so all I had to have > > was a dr's note to return. I know it's all new and kinda weird. Almost > > two years out I still jump whenever they call to tell me to change a > > med or repeat a lab. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Cy, It's good to be remembered. They recently put me on enalapril and it raised my creatine a little too, so I'm kinda fresh off a scare for that kind of thing. I've been on 75mg 2x a day for about a year now. They keep trying to raise it and I won't let them because I get the shakes at 100mg. I've been on the same dose for a year and i've been fine so far they have let me stay with it. I'm normally a good obediant patient, but this is one of the few things I fight for. How are you doing? > JASON!!!! > > Boy it is good to hear from you! That artificial inflation of creatinine > can be scary. Back when was on it, his creatinine more than doubled. > Since he was so newly diagnosed and nobody had a feel for how stable he was, > it was very scary. > > Congrats on getting the neoral down to 75mg twice a day. Do you have any > problems with that kind of dose? > > Cy > > > In a message dated 2/18/2005 11:41:48 P.M. Pacific Standard Time, > > sixteneighty@y... writes: > > > > > > > > , > > > > My name is and I had a TX in April 03. I had the same reaction > > most every tranplant patient has to being told there is a stent in > > your bladder, first " WHAT!! " second " I don't know how you think you > > are gonna get that thing out, but it's sure not gonna be that way... " > > I think it's pretty much standard procedure to help keep the kidney > > attached to the bladder while it heals. > > > > As far as the neoral, everyone metabolizes it at a different pace so > > they check for the level of it in your blood and try to keep it at a > > certain place. Neoral is nephrotoxic so it hurts your kidneys to some > > degree so they try to keep it at a minimum. Neoral levels being too > > high can artifically inflate your creatine numbers as well as make > > your hands shake. It's perfectly normal for them to adjust it for the > > first 6 months to a year until everything is settled. My neoral level > > is currently 75mg 2x a day and I think I started at 225mg right after > > the tx. Every hospital has different targets and procedures so it's no > > telling where yours will end up. > > > > I went back to work about 5 weeks after my transplant, but I wasn't on > > SSD and worked through dialysis and everything so all I had to have > > was a dr's note to return. I know it's all new and kinda weird. Almost > > two years out I still jump whenever they call to tell me to change a > > med or repeat a lab. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Hi , It's good to hear from you too. It is hard to believe it's been two years already. I still get jumpy with every dr. call or visit. I'm kinda paranoid about the extra kidney. Don't want anything to happen to it. They tell me that where I am now I should be fine, but ya never know. I'll tell you said hi. > > Hi , > > Good to hear from you. I could hardly believe it has been 2 years since your > transplant! That is hard to believe. > > I was surprised that even post transplant there is still that anxiety > waiting for lab results. Guess that never goes away. > > Take care of yourself and your beautiful bride! > > > > In a message dated 2/18/2005 11:41:48 P.M. Pacific Standard Time, > sixteneighty@y... writes: > > > > , > > My name is and I had a TX in April 03. I had the same reaction > most every tranplant patient has to being told there is a stent in > your bladder, first " WHAT!! " second " I don't know how you think you > are gonna get that thing out, but it's sure not gonna be that way... " > I think it's pretty much standard procedure to help keep the kidney > attached to the bladder while it heals. > > As far as the neoral, everyone metabolizes it at a different pace so > they check for the level of it in your blood and try to keep it at a > certain place. Neoral is nephrotoxic so it hurts your kidneys to some > degree so they try to keep it at a minimum. Neoral levels being too > high can artifically inflate your creatine numbers as well as make > your hands shake. It's perfectly normal for them to adjust it for the > first 6 months to a year until everything is settled. My neoral level > is currently 75mg 2x a day and I think I started at 225mg right after > the tx. Every hospital has different targets and procedures so it's no > telling where yours will end up. > > I went back to work about 5 weeks after my transplant, but I wasn't on > SSD and worked through dialysis and everything so all I had to have > was a dr's note to return. I know it's all new and kinda weird. Almost > two years out I still jump whenever they call to tell me to change a > med or repeat a lab. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.