Live and let liver

I’m tired. I’m stressed and I’m not coping well. In fact, I’m fairly well tired of coping. Let someone else cope for a while.

To briefly recapture events of the last two weeks:

Feb 12: Felt like I was coming down with something. Went to work, but hung out in in hottest rooms I could find. Couldn’t seem to get warm.

Feb 13&14: Got plenty warm. Started spiking temperatures of 102°+F. Stayed in bed most of the time, promising myself that I’d get up in “one more hour”. Wasn’t out of bed before 3:00 in the afternoon of either day. Was sure I was coming down with the flu, even though there were absolutely no respiratory signs.

Feb 14th pm: Downtown hospital transplant unit told me to hither to an emergency room to get a battery of tests done. Waited around in the ER for a couple of hours, got some preliminary bloodwork done, was admitted. Liver enzymes way up, but nobody wanted to commit to a diagnosis of liver rejection. Aerobic and anaerobic blood cultures taken, fluid squeezed up my nose then siphoned back out, urine samples provided. Oh, and about eleven (maybe twelve, I wasn’t sure) tubes of blood extracted from protesting veins. I got a room with a view of the duck pond and an IV bag of heavy duty antibiotics.

Feb 15th: Transferred from Smalltown hospital to Downtown transplant ward. The transportation service got Downtown Hospital mixed up with Center City Hospital and tried to deliver me to the wrong place. When I protested and they delivered me to the right hospital, they didn’t have any drop-off instructions for me. The transport van circle Downtown Hospital three times like a vulture seeking something dead, looking for a door that would take me in. After the third pass I told them to forget it and disembarked at the Visitors entrance dressed in hospital gown and parka, with a blanket wrapped around my waist to keep my ass from offending other Asses. I walked myself and my paperwork to the transplant ward. They attached a bag of steroids to me. When that ran out, they attached a bag of antibiotics. Then another bag of steroids. This trade-off in IV’s ran the course of the weekend.

Feb 16,17,18: Countless more tubes of blood taken. Liver values begin to descend, fevers eventually stop. Nothing cultured from blood or urine, so we’re now pretty definite we’re dealing with rejection. I’m starting to feel a little more energenic. On Monday the 18th they perform a liver biopsy via the juglar vein. I’m still sporting a one inch incision and large puncture wound on my neck from that, liberally covered in superglue. Apparently sutures are passé.

February 19th: I’m released on steroids, Rapamune, Cellcept and Prograf. I’ve hopes that we eventually wean me off of everything excet the Rapamune, which is supposed to be the immunosuppressant of choice for T-cell lymphoma. A nice plus by this point: all the steroids have completely resolved the cutaneous T-cell lymphoma rashes on my body. It’s only temporary; the skin might look better but the cancer is still there (just quiet). I’ll take what I can get. On the down side: I’m now hyperglycemic thanks to the steroids and stress, and am checking my blood sugar four times a day. I’m not on a lot of insulin (averaging two or three units a day), but the situation isn’t improving much. I’ve some private fears that I will be left insulin dependent by the time we get this sorted out.

I returned to work for a half-day Friday, and back to full time today. I’ve brought Dr. Liver, Dr. Skin and Family Doctor up on as much as I can. Dr. Liver is furious; he believes that cutting back on my immunosuppressants in December is responsible for this and that the reduction wasn’t handled properly. Dr. Skin won’t let me start up the PUVA treatments yet, so I’m losing time with the CTCL treatments now. Family Doctor wants me to consider seeing a therapist. Apparently the stress is showing.

It isn’t fucking fair. I’ve done everything I was suppposed to. I always take my pills on time, I lost 55 pounds (though the steroids are already doing some damage to that), I get all the bloodwork done, I keep all my doctor’s appointments, I’ve educated myself on what I need to do. This is not supposed to happen.

Even with top-notch insurance I’ve spent close to $200 on medicine in the last week, and I have another $100 on order for Wednesday (and that’s not counting the new insulin needles and glucose monitor strips I also need to buy). The inept transport from hospital to hospital cost over $200. Family Doctor wanted me to consider taking some disability time off as well, but it takes six weeks for my disability check to kick in and I only have a week and a half left for time off this year. I can’t go four and half unpaid weeks until I get a check 2/3 of what I’m used to making. And I don’t want to anyhow. I need to keep busy. It keeps me from thinking.

I know I’ll feel better when I get off the steroids. Damn things make me frenzied and suicidal.