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.