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Long week – brief update

Well, I’ve been hanging in there with the CPAP every night. I’ve got little marks on my cheeks now to prove it. I still can’t seem to get through a night though. Well, I do, but I’m up several times a night messing with the mask. Last night I did a new trick. I didn’t wake up once, but when I woke up the mask its self was on the floor next to my bed, and the headgear was still on my head. So, I have no idea how much of the night I was really getting what I needed.

Yesterday I went to the doctor to get some blood work and discuss the NIH trip. I’ve been temporarily taken off of the Pirfenidone protocol trial because my CK and CK MB were so elevated the day after my little “surgery.” This is an indication of muscle break down, or so I understand (feel free to correct me – my brain isn’t real sharp today). There seemed to have been some debate about whether it was due to platelets, or whether it was due to laying on my back too long the day of the surgery. At any rate, I’m waiting on my doctor to call me back and let me know if those levels came down so I can get back on the trial ASAP.

NIH also gave me some medicine to try to help keep me awake during the day and that’s taking some time to adjust. I’m still sleepy during the day, although have better concentration – but I’m afraid to up the dose because of my blood pressure issues. So, we’ve adjusted the blood pressure medication and I’m sort of waiting to see what happens and what everyone’s response/feelings about the whole thing will be.

Meanwhile, I’m getting through, but feel so overwhelmed with everything that I need to be doing. All I want to do is sleep.
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