February 4, 2012
Yesterday was a pretty good day for Jeff. He felt better than he has in a really long time. He was feeling good and awake in the morning, so he let me sleep in and took Dylan to preschool for me. After we picked Dylan up at lunch time, we ran a couple of errands. Usually, getting up and down so much makes him feel really bad. At 2:00, we went to see the cardiologist to discuss the implantable heart monitor. His EKG was good. His blood pressure was a little high, but one of the medications he is taking is supposed to raise blood pressure. Apparently, since the last time we were there, they have come out with some new technology and now have an external monitor that has no wires to pull loose. You stick it to your skin and wear it 24 hours a day for 14 days. You sleep in it and shower in it. This solves the problem of Jeff passing out when the other monitor wasn’t on. If I understand correctly, it records constantly. There is a button he can push when he feels dizzy or bad. I think that just flags that part of the recording so the doctor will look to see what was happening at that time. It is also programmed to flag any time his heart rate goes below a set number or above a set number. The doctor said this was better than the implantable one for Jeff because it doesn’t require surgery. Jeff is prone to infection, so avoiding surgery is definately a good thing, not to mention the savings in cost. In a way, I guess we are hopefull that they will figure out why he is passing out, but the doctor didn’t seem convinced we would learn anything new. He says he still thinks it is orthostatic hypotension. This is when your blood pressure drops when you stand up, cutting off the blood supply to the brain for a short time. That is what they are treating him for, but one doctor swore it wasn’t that because his blood pressure is about the same when they take it sitting and then standing. He said that they are taking it too soon after he stands. I agree because Jeff doesn’t pass out immediately. He usually takes a few steps and then passes out. When we asked why it suddenly got worse, he said he thinks it is the chemo that caused it. He also said that he is sure the chemo is to blame for the bone pain Jeff has experienced. We discussed the fact that Jeff’s feet are always freezing, even when the rest of his body is sweating. He said that the chemo has probably damaged Jeff’s autonomic nervous system. He said Vincristine in particular is known to do this. He said that most likely Jeff’s body is misinterpretting the signals from his brain. This can cause any number of odd symptoms, many of which Jeff is experiencing. One of the things it can do is aggravate orthostatic hypotension. He doesn’t expect to find any problem with Jeff’s heart. If this is the case, we will just have to keep trying to manage the OH and hope that it improves. This seems to give more evidence that chemo is not the best thing for Jeff.
Today was not as good. Jeff has felt bad all day and passed out around lunch time. He had hoped to go to a birthday party with 2 of the boys, but had to cancel. He ate cereal kind of late, so he skipped lunch. I made an early dinner of one of his favorites and he didn’t eat much. He was complaining of nausea after only a few bites. So now, he has had some compazine for the nausea and is sitting on the floor putting together legos with Mason. Hopefully, tomorrow will be better.
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