Archive for June, 2010


I’m out! Through cunning, misdirection, careful planning, bribes, an elaborate disguise kit, and the permission of my doctor, I was sprang from the hospital this past Wednesday. It kind of looked like this:

So my billirueben is down around the 3s and 4s; it does move around a bit, but the trend it down, and fluctuations are to be expected. I have lost most of my prednisone swelling, although my face is still noticebly jowley. I feel great, albeit anemic, as I am (a combination of the prednisone and the photophoresis – a condition that will aleviate as soon as I’m weened off). I do the photophoresis four times a week in out paitent right now, a process of about four hours, and will continue to do so for the month of June, at which point I will have an assessment and most likely a reduction in visits. With any luck, I will be weened off, or greatly reduced the amount of prednisone I take.

Aside from that, my life has become less restrictive! I am far enough away from transplant that I can go out and do things – obviously being careful, especially around sick folks – and even go out to resturants! (nothing dirty, no salads) I am, however, very sensitive to the sun as a result of the photophoresis treatment, and must wear sunblock, longsleeves, wrap around sunglasses and a hat while outside, in addition to sticking to the shade as much as possible. Yet I find this a perfectly accetable price in exchange for health and freedom. I also have my grandfather’s sweet fedora, a tiger winter hat I got from my sister, and sleek sunglasses, so I feel confident that this new “restriction” is only a cleverly disguised ploy on the part of the universe to make look like a badass.


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Well, I’ve been in the hospital for two and a half weeks, and my billirueben has been steadily going down. It did go up twice, but then continued to go down. Over the weekend, my doctor switched me to oral steroids, as apposed to the more potent IV steroids for which I was hospitalized to recieve, to see how I did on them. My billirueben did go down, or stayed the same, so that was good. So, yesterday, my doctor told me that if my billiruben went down again today, I’d get to go home. I got my billirueben back today, and it did go down, but only a 10th of a point, which is within the margin of error. All the nurses seem to think I will go home,  but I know my doctor is very concervative about sending people home, as she understandablely doesn’t want them to just have to come right back to the hospital. So now I wait to see the doctor, and see what she says. More updates to come.

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