I have to say I'm very grateful that I went to the local doctor who decided to run CBC and CMP both of which are supposed to be done monthly while on Valcyte. My ME/CFS doctor told me I didn't need anymore bloodwork for the next 3 months on Valcyte. I have been uncomfortable with this and have no idea what he was thinking when he told me that. It is irresponsible and unheard of.
I haven't had any labs drawn for the past TWO MONTHS I've been on Valcyte because my doctor didn't think I needed it.It is a dumb thing to do and I don't recommend it. Here's why: My local doctor who is familiar with Valcyte ran the above tests. I got the results this morning. My liver values (AST and ALT) are very high! What is scary for me is because I haven't had labs for the past two months (since June 2) I don't know how long those values have been elevated so I don't know how much damage has been done to my liver.
The other thing is my blood sugar was also elevated and the test stated I have prediabetes. I know of others on Valcyte who have had that happen.
If I hadn't had these tests I would have continued to take Valcyte for the next well two months now all the while causing damage to my liver which could have led to some really bad consequences.
I'm grateful it will be my local doctor handling this. If it was my ME/CFS doctor I don't know that I would have heard anything from him. I would hope so but his doctor skills lately have been...well, sloppy is the word that comes to mind. I fully expect that my local doctor will have me in his office early next week to run more tests to determine the extent of any damage. I'm also confident he will closely monitor my liver values to make sure they go down.
I just can't believe it. I've been feeling extra fatigued along with feeling like my liver is swollen. The swollen liver feeling has been there for at least a month. I've also had pain there but thought it might be gallbladder stuff. I wonder if this is also why I've been having water retention and a general lack of appetite.
This morning I woke up after another night of not sleeping (couldn't go to sleep until after 12, then was up from 3 to 6, then awake again at 9). I had this feeling not to take Valcyte this morning so I didn't. When I checked my email my lab results were there.
This just confirms my decision and gut feeling to change my ME/CFS doctor. I will probably go to another doctor at the same clinic. The other doctor has a solid reputation.
I do think there was Higher Power at work to have led me to the local doctor who ran the tests I needed.
I have no idea what to do in the meantime. Do I take the rest of my medications? I guess I'll look up each one to see if they are processed in the liver.
So my treatment with Valcyte is officially over. I just pray I don't have permanent damage to my liver.