Hi again, I am waiting to hear back from Jerrold. But in the mean time, I found the name of the med. that Anna was on right after transplant. This may be what they are putting you on now.
She was on Cytogam. She had it soon after tx, then at the 2,4,6,8,12 and 16th week post tx. During this time she also was taking the Valcyte. I was wrong abuot the time it took though, it was three hours for the infusion and once it must have taken 4 because she kept itching, so they slowed it down even more. Then at her annual appt. because she had not had any occurances of CMV they switched her from Valycte to Acyclovir. She just had an episode of A4 rejection and they put her back on the Valcyte.
How they have treated your CMV really shows the difference in protocol at the different transplant centers. Perhaps asking them about staying on the Valcyte for longer than the 6 months. Of course they may be worried about additional possiblity of side effects from being on the Valcyte longer. Every patient is different so their reasoning may be due to how your other blod work looks and your kidney function. As with all the meds tx patients are on, it's like a give and take situation. But it might be worth asking them about staying on the Valcyte longer, if that is a problem.
When Anna was put on V-Fend for Aspergillus it was temporary, but by the time they wanted to finish up the course she was home from school. V-Fend makes your Prograff (tacrolimus) levels go high so that has to be readjusted, which takes weeks. Well the reverse happens when you go off, it's too low. When Anna is home she is in a different insurance region and can't get routine stuff done, like blood work. So I asked them if she could just stay on it until summer was over. At firs they didn't wanto to leave her on it for that long but after talking with the tx doc. they called back and said it would be fine for her to stay on it for an additional month and a half. And low and behold she's back on it since the rejection episode last month.
Guess, that's it for now.
She was on Cytogam. She had it soon after tx, then at the 2,4,6,8,12 and 16th week post tx. During this time she also was taking the Valcyte. I was wrong abuot the time it took though, it was three hours for the infusion and once it must have taken 4 because she kept itching, so they slowed it down even more. Then at her annual appt. because she had not had any occurances of CMV they switched her from Valycte to Acyclovir. She just had an episode of A4 rejection and they put her back on the Valcyte.
How they have treated your CMV really shows the difference in protocol at the different transplant centers. Perhaps asking them about staying on the Valcyte for longer than the 6 months. Of course they may be worried about additional possiblity of side effects from being on the Valcyte longer. Every patient is different so their reasoning may be due to how your other blod work looks and your kidney function. As with all the meds tx patients are on, it's like a give and take situation. But it might be worth asking them about staying on the Valcyte longer, if that is a problem.
When Anna was put on V-Fend for Aspergillus it was temporary, but by the time they wanted to finish up the course she was home from school. V-Fend makes your Prograff (tacrolimus) levels go high so that has to be readjusted, which takes weeks. Well the reverse happens when you go off, it's too low. When Anna is home she is in a different insurance region and can't get routine stuff done, like blood work. So I asked them if she could just stay on it until summer was over. At firs they didn't wanto to leave her on it for that long but after talking with the tx doc. they called back and said it would be fine for her to stay on it for an additional month and a half. And low and behold she's back on it since the rejection episode last month.
Guess, that's it for now.