Feeling off and on all day today. I got 2 fresh bags of red blood cells this morning since my hematocrit finally dropped below their threshold, from 27 to 24. This might explain why I was so fatigued yesterday, but even after the red blood cell transfusion I still feel pretty week.The main issue right now is that I'm developing a skin rash over my whole body. It doesn't itch yet, but the docs don't like the look of it since it's getting worse, and also because it's not graft vs. host disease, which means it's coming from somewhere else. They suspect one of the new king-kong antibiotics I'm on (Imipenem) and switched me over to Aztreonam which should supposedly protect against the same things that the Imipenem did, but without the rashes. Rashes from GVHD are expected, but not until my new cells start engrafting, around Day 14 - 21.
Johanna, my mom, and Johanna's sister, Val, all stopped by today to help get me going and give me words of encouragement. I didn't get my full 2 miles in today, but walked 1.5 miles which felt pretty good.
The other new change is that they detected c.diff in my stool, which can happen when people have no immune system. C.diff is a bacteria that lives in your gut, and a normally healthy person won't ever suffer from it. If the immune system is compromised, the c.diff bacteria can take over and actually cause the disease called c.diff, which includes diarrhea and stomach cramps. So because mine is on the attack, I'm under what's called "Contact Isolation", which means the nurses and anyone who enters my room has to wear a gown and gloves. This isn't to protect me from them, it's to protect them from me spreading c.diff to other patients! So now I have to wear a gown and gloves during my walks. It's sort of funny that I'm the one that can infect people for a change, and not the other way around.
Had several high fevers again today, around the 102.4 range. Hopefully the new antibiotics will kick in to help this out. This, and my worsening mouth, are perhaps the most uncomfortable parts of the day.
Breakfast (cereal and milk), lunch (high-calorie protein shake) and dinner (Ivar's clam chowder) all stayed down today, so I'm happy about that. One of the nurses hooked up a little suction wand, sort of like the one dentist's use, to help suck out the increasingly annoying amount of mucus and saliva that keep building up in my mouth. This is much better than using a spit cup, as I'm finding I need to use the wand about once every 15 minutes. Annoying. But satisfying afterwards.
After dinner, the nurses brought in another bag of platelets since my counts had fallen below the threshold again (the threshold is now 20), so I was really zonkered after taking my normal Ativan and then getting 25mg of Benadryl. The Benadryl nap was great, and I woke up a few minutes ago to write just a little bit before attempting some sleep. Wish me luck!
Here's a picture of Erika and Tyler (two of my nurses), my mom, and Val all gowned up.
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7 comments:
Steve-
Keep thinking positive! You have a great medical team and a tremendous family behind you as well as friends. I am in awe of how you are handling all of this! Plus your blog is "educating" me and is stirring me to look at helping out in some small way medical arena. Keep smiling!
C.Diff ehhh? Sounds like the name of a rapper.
Or maybe a good name for a pet monkey that throws poop at people.
Makes me wonder what incidences in the past have happened at the Hutch that they make you wear a gown ;P
George, unfortunately, that was exactly the first thing that crossed my mind. I can see stever as that little monkey on the bumper stickers "I throw poo"
and as far as C.Diff ... i actually went the other way and thought diff.c which is what you would compile if you wanted to compare two unix files.
Man, that's just sad how our brains work.
Stever. Keep up the walking. Even with the gloves. (don't explain why the gloves. I don't need to know) ...
P.S. Every day when I wake up feeling sorry for myself because I'm housebound, I read your blog and its an inspiration to me. I hope other people will read this and be as inspired as I am!
I can't really add anything more to what George and His Royal Obscureness had to say. Hang in there, Stever!
- S
Enjoy your pictures, too. Keep those spirits up. Hope the change in antibiotics takes care of the rash. Glad you're able to keep up the walking.
Beth and Jeff
Stever, I'm a little worried about you: this is the first photo you've posted where you aren't smiling. That's not good. If you're not careful I'm going to have to call the nurses and tell them to beat you more, until you smile. Got it?
*hugs*
- S
I love this picture of your nurses and mom and Val!
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