Still have weekly appointments at UCLA, and weekly IVIG infusions at home. My predinsone (steroids) have been reduced from little to none just this past week, and I'm sleeping 12+ hours most days. I wake up at a normal hour, but just can't seem to make it past 9 or 10 am most days, and end up back in bed until 1 o'clock. On the rare days that I'm not able to take a nap, I'm usually out for the count and fast asleep by 8pm. Its definitely an adjustment, and I hope that in time, I won't feel so exhausted all of the time.
Adding to my exhaustion is the 8+ hours I spent on the phone with the insurance company and the mail order pharmacy that they required me to use for one of my medications, last week. The prescription was initially submitted to them on November 15th. First I was told that there was a problem with the quantity, and getting approval, then I was told that a pre-authorization was required. I worked with the dr's assistant to get that taken care of. Then I was told that a prior authorization was not required, but that the pharmacist put the medication on hold because it "interacted" with another of the medications that I am on, (uh duh, I think that my doctor is probably aware) and finally they promised to expedite the shipping on November 27th.
I made them give me a tracking number, but every time that I pulled it up, there was no information available. My doctor called in a "back up" to my local Walgreens, so I called them to see if I could get the prescription filled there, since I was told that I could not miss a dose (Tacrolimus). I was told by Walgreens, that my insurance would not cover the cost through them, and that if I wanted to fill it, it would cost $135 for one month supply, out of pocket.
Finally, when I had one dose left, I called the mail order pharmacy again and make them look up when it had been shipped and where it was. On the 30th they told me that a label had been created on November 27th, but the medication had never actually left the facility. Seriously? So I asked them what I was supposed to do? I can't miss a dosage, my insurance company is requiring me to have it filled through them, the shipping was supposed to be "expedited" three days earlier, and I only had one day's worth of medication left. I was told that my local pharmacy could fill it, and that they would give them an "override" so that insurance would cover all but my copay. I called Walgreens and told them that they would need to call in for an override, so I could fill the medication through my insurance. They called the insurance company/mail order pharmacy and were denied. Seriously? Seriously? So....fuck me. I had to call the mail order pharmacy again, speak to another agent, who also promised an override, but this time actually got it to to through, and then wait for Walgreens to fill the prescription so that I could go pick it up. Hours and hours spent on the phone to get a single prescription filled. Is it any wonder why I'm so tired?
The original prescription from the mail order pharmacy came in the mail today.
Still very little hair. The doctor told me that generally after transplant hair doesn't start growing back until between days +60 to +80, and that it will grow in very slowly. I have a bit of "kitten fur" as Keith calls it, coming in, but I still look completely bald unless you are standing within 6 inches of me. Speaking of which, please don't. I still need to be very careful about being around people and wear my mask whenever I go anywhere, or see anyone besides Keith, or my home nurse.
Next week at my UCLA appointment (pending insurance approval) I should be having a bone marrow biopsy that will give me more information about whether or not there are any lingering leukemia cells, and the percentage of my cells that are donor, and the percentage that are my old cell line. The less leukemia, and the more donor, the better. Hopefully this poke in the bone goes as easily as my previous ones have.
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