Natalie's update
Posted: Tue Aug 31, 2004 2:46 pm
So, I have seemingly settled at a creatinine of 1.0. My urine output seems to have stabilized at about 1500 to 2000 cc a day. Does that sound about right? It was very high post surgery, and when I first got home because I was so full of fluid post-op and they had to give me some Lasix to move it along.
My potassium has gone up a a little from the Prograf, but they lowered it to 3 in the am, and 3 at night from 3 and 4 and that helped. The Prograf level was too high and somewhere like 14.5 in my blood. They did say they feel they'll need to lower it again. And it's not going to be my maintenance. My maintenance will probably be about 1.5 or 2 in the am and evening.
My hg is still too low. It was 9.3 prior to surgery with 10,000 units or EPO a week, and then only 6 post surgery because I lost a lot of blood. They thought to do a blood transfusion, but then decided not to do that, just less risky I guess to avoid it. They figured with my age, and otherwise good overall health to try and avoid it. It's gone back up to nine so far, with 20,000 units a week. I am thinking that some of that will resolve on it's own as I get further out from transplant, no?
I finally settled the biopsy dilemma for all involved (myself, my Mom, and the doctor). If my creatinine goes above 1.4 since I seem to have stabilized at 1.0 then we'll do a biopsy. I am cool with that. In the meantime it means I do not have to do the protocol biopsies. And also, it would be only if we couldn't find a reason for the rise, like medication increase, or dehydration. I felt that was satisifactory, what do you think?
As of next week I only have to go to the clinic once a week, it will already be one month then!! It seems hard to believe, but now I know what people mean by recovery time. It does just take the steam out of you. I haven't had too many side effects from meds, just occasional stomach pain, and sort of like mygalia, like a pain all over in the joints. I am guessing that was partly from meds, and from the Prograf being too high. And the right leg, the side the transplanted kidney was put in, has been very sore, I suppose from compensated walking, and from the fact that my right foot was swollen beyond belief, but of course they still encourage you to walk post-op day one. It literally turned blue from the pressure, even after the swelling was gone, and it's been very throbbing at the end of the day.
Has anyone found they had body aches post transplant? And was any of it medication related? I'm still not quite at three weeks post-op so I assume it's part of the healing process. I've been walking tons, like sometimes four to seven miles a day. By the end of the day, the muscles aches can just sort of make it impossible to sleep. Like I'm drowsy but have insomnia.
Also, I found that hot water makes my skin feel tingly, again I think it might be the Prograf.
The doctors are happy with my function however. I am doing well, things are stabilizing, and I thank my lucky stars everyday that I've been given this gift. Another life. But most of all, I wish it for ALL of you here who are hoping for it. As much as it is an operation, you'll almost welcome the experience, because it's such a gift, and it just changes something in you, in a good way.
So just to make myself clear, I want this for ALL of you. And I think of all of you here each day that are in that "no-man's land." Don't be afraid of the surgury, it's really not that bad, and the time goes quickly where you really feel compromised. It's exciting in an odd way.
My potassium has gone up a a little from the Prograf, but they lowered it to 3 in the am, and 3 at night from 3 and 4 and that helped. The Prograf level was too high and somewhere like 14.5 in my blood. They did say they feel they'll need to lower it again. And it's not going to be my maintenance. My maintenance will probably be about 1.5 or 2 in the am and evening.
My hg is still too low. It was 9.3 prior to surgery with 10,000 units or EPO a week, and then only 6 post surgery because I lost a lot of blood. They thought to do a blood transfusion, but then decided not to do that, just less risky I guess to avoid it. They figured with my age, and otherwise good overall health to try and avoid it. It's gone back up to nine so far, with 20,000 units a week. I am thinking that some of that will resolve on it's own as I get further out from transplant, no?
I finally settled the biopsy dilemma for all involved (myself, my Mom, and the doctor). If my creatinine goes above 1.4 since I seem to have stabilized at 1.0 then we'll do a biopsy. I am cool with that. In the meantime it means I do not have to do the protocol biopsies. And also, it would be only if we couldn't find a reason for the rise, like medication increase, or dehydration. I felt that was satisifactory, what do you think?
As of next week I only have to go to the clinic once a week, it will already be one month then!! It seems hard to believe, but now I know what people mean by recovery time. It does just take the steam out of you. I haven't had too many side effects from meds, just occasional stomach pain, and sort of like mygalia, like a pain all over in the joints. I am guessing that was partly from meds, and from the Prograf being too high. And the right leg, the side the transplanted kidney was put in, has been very sore, I suppose from compensated walking, and from the fact that my right foot was swollen beyond belief, but of course they still encourage you to walk post-op day one. It literally turned blue from the pressure, even after the swelling was gone, and it's been very throbbing at the end of the day.
Has anyone found they had body aches post transplant? And was any of it medication related? I'm still not quite at three weeks post-op so I assume it's part of the healing process. I've been walking tons, like sometimes four to seven miles a day. By the end of the day, the muscles aches can just sort of make it impossible to sleep. Like I'm drowsy but have insomnia.
Also, I found that hot water makes my skin feel tingly, again I think it might be the Prograf.
The doctors are happy with my function however. I am doing well, things are stabilizing, and I thank my lucky stars everyday that I've been given this gift. Another life. But most of all, I wish it for ALL of you here who are hoping for it. As much as it is an operation, you'll almost welcome the experience, because it's such a gift, and it just changes something in you, in a good way.
So just to make myself clear, I want this for ALL of you. And I think of all of you here each day that are in that "no-man's land." Don't be afraid of the surgury, it's really not that bad, and the time goes quickly where you really feel compromised. It's exciting in an odd way.