Hi @hello1234, the nurse says they will increase Myfortic to original level when CMV is consistently undetected in the next few weeks. The reduced Myfortic level is 360mg and the original level is 540mg so basically 1 pill more in the am and pm. Hubby's trough level runs between 5-6 now and the nurse didn't say anything about upping it back to 6-8. She only mentioned increasing Myfortic. I was hoping she would call today but she sent a message via patient portal instead. Our nurse says it's more common for transplant patients to get CMV and BK in the first year but not in your case apparently. I'm hoping hubby will be lucky enough to be spared of it, cross finger! Glad to hear your BK is clearing!!
My friend said her BK lasted about 3-4 months. After BK went to zero, Mayo had her do labs once a month for about another year to monitor her BK. Her meds did eventually go back up to normal and I believe she said it didn't take too long before they restored
her original dosage. She never got CMV even though the donor was CMV positive(they were 2 baby kidneys but now have grown to adult size). She will be 3 year in Feb 2023.
Yes it definitely helps to talk about these transplant issues with someone or close to someone going thru it because they can relate to these issues. There are support groups for kidney transplants/dialysis on facebook that you can join if interested. I belong to 2 transplant groups now and previously I participated in a couple of other dialysis groups. These groups are usually private that you have to get permission from the moderator(s) to join. Whenever I have questions about something related to transplant I would post them in the group. This group is good to get feedbacks from Mayo Clinic patients.