Mom sent me a get well soon card. It said:

"Every germ has an angel that watches over it and whispers... 'Die, little germ! Die!' "

What an awesome card - Aw, thanks, Mom... I still want to know how come the poor little germ's angel turned against it? LOL

Today's LifeLink appointment went well. Had a long talk with the doctor and somewhat mapped out the next few weeks and what's going to happen with my medications. Right now we're just going to keep things as they are (i.e. stay on the Prednisone and off the Myfortic, Septra and Valcyte) and see what happens. Just since this Tuesday when I last had labs drawn my WBCs are back down to 4.5 from 5.0 - five-tenths in two days. The doctor said this is normal - the Neupogen shots I was receiving in the hospital can 'spike' the WBCs temporarily and then they fall back down to a more 'stable' state. The key is keeping it about what it is now and not much lower.

Today I was better. Thank goodness I feel better (yay!)

Tomorrow morning I have a LifeLink clinic appointment to see what my blood counts look like. I think they'll be good.

Both of my arms are so bruised I look like a battered woman. 10 days ago at my surgery they tried four times to put in an IV line before they succeeded. I still have bruises from that. Of course they also had to stick me in various places for blood then, too.

Now with this most recent 5 (6?) day stay at Tampa General, they had to change my IV line (put it in a different place) every other day because the meds they gave me were so strong they ruin (bruise and collapse) your veins quickly (and hurt like hell). PLUS they drew blood on me twice a day and had to draw it from a different place away from my IV line. And the most irritating thing? Yesterday the sutures from my surgery a week and a half ago all decided to pop open, leaving me freaked out (major!) with an open wound on my arm. Of course they taped everything shut with these tape suture things, but basically my surgery scar hasn't healed AT ALL.

And sorry to vent. I'm feeling sorry for myself right now. Just ignore me.

I'm home from Tampa General.

I think I need a few days to process this last week and most recent hospital stay.

Not that I really want to be back at TGH (I don't!) but I've been here since Tuesday morning.

The last three weeks have been... "interesting" in terms of my health. First, my old graft got infected, then the graft was removed surgically, after that my incision site and arm got infected, again. Meanwhile, my white blood cells (WBCs) kept going down and down. Finally, my WBCs dipped so low (0.5) that it was dangerous for me to be out in the regular world with regular germs.

Then, on Tues morning (before coming to TGH) I spiked a fever and started feeling really bad. LifeLink wasted no time in admitting me to TGH and starting me on various treatments.

Wednesday was the toughest day - I had a lot of major bone pain in my pelvis and legs due to the medication they were giving me to stimulate my bones to make more WBCs. Thursday wasn't too much fun, either, when my third C-Diff test came back positive.

After several days of receiving antibiotics and other medications I'm feeling better. My WBC count has come up to close to "normal" for a transplant patient, but I'm still running a low-grade fever.

The whole time I've been here I've been on "reverse isolation" (so I won't get anyone else's germs) and now "full precaution isolation" (so no one else will get my C-Diff germs). Its been a little lonely. I haven't been able to have visitors although I really don't want anyone's germs, anyway.

All the tests they've done to determine what's wrong with me (other than the C-Diff which can be caused by receiving a lot of antibiotics so its more of a side-effect) have been inconclusive. No one knows - maybe it was a virus or maybe it was something else. Either way:

... the most important part is that my kidney is fine and all tests on it are fine: my kidney function is normal and my kidney is healthy.

I might be discharged tomorrow, more likely Sunday.

Almost exactly 12 hours after the last post I wrote, I was admitted to Tampa General Hospital, again. I will be here for an indefinite amount of time until they figure out what's causing my severe leukopenia.

l felt fine (more like great!) over the weekend and had a wonderful day with Alek on Monday (the day before he started 2nd grade). Tuesday morning @ 6 AM I woke up with chills, severe body aches/pains and a fever. I managed to "fake it" for he's sake until after I got him to school. As soon as I got back home I crawled into bed and couldn't get rid of the chills. Ken went to work and I finally called LifeLink when my temp read 100.8. They said to come directly to Tampa to the clinic and "bring a bag in case we need to admit you" (which I didn't really take too seriously, but I stuffed a day's worth of things into a bag, anway.) I drove myself to LifeLink

My LifeLink STAT CBC (complete blood count) labs showed another drop in my WBC count - down from 0.9 Friday to 0.5. NOT GOOD.

As the sad and sorted story goes. Here I am, still at Tampa General. I don't know for how long. I'm hoping I'll get out before the end of the weekend.

I've felt like death-warmed-over pretty much the whole time I've been here. The biggest issue (besides the non-stop watery poop?) is the major MARJOR bone pain I've been having in my hips, pelvis, legs and joints. They tell me one of the medications I'm getting to stimulate my body into making WBCs is most likely the cause of the pain. Its like nothing I've ever experienced - Have you ever had sharp throbbing pain from your hips, back and tailbone that radiates down your femur and into your knees and ankles? Well, that's how this feels.

Probably the biggest CLINICAL issue is the fact that I'm still running a fever (99.9 at the most recent check) no one can figure out where the infection in my body is and/or the virus that is causing all this. I'm on broad-spectrum third-tier antibiotics (fun stuff like Vancomycin, that I'm slightly allergic to) The drugs make me feel worse and to make it even more fun, now I have C-Diff again (had it last year in the spring). I've been poked, prodde, ultra-sounded, x-rayed, peed in a cup pooped in a cup, put in reverse iscolation (i.e. I'm isolated for my own protection since right about now I have NO immune sysgtem) and just about all the other tests you can think of.

At least I'm with a great hospital staff and a fantastic group of deoctors and nurses go help me out. I've been treated very well.

Not to cut this short, but my nurse just came and gave me a whole bunch of painkiller and I'm going to be switching over into my "stupid mode" for the next couple of hours.... which means I can't be held responsible if this post look discusting wwith bad grammar or sppleing or typos like the ones I see, but Im not going to chancebecause you get the picture better that way.

Email me if you want details.

I hate taking Prednisone.

I will always hate Prednisone and taking it.

I will never submit to it's forces.

OK, x-out that last part. I can't help it. The Prednisone Crazy Streak ^TM ??? NOT. FUN. I want the Prednisone and its little Prednisone Gremlins ^TM to GO. AWAY.

NOW.

Thank you and GOODNIGHT.... (I mean, I'll be here, 'cause I can't f-ing sleep! But you? You've probably got somewhere to be, someone to do, or at the least, some sleep to get. Ciao!)

This post is about the most difficult topic for me to talk about. My weight, my eating, my obsession with food/calories/weight. MY EATING DISORDER.