Typing this on my iPhone because we are not sure which bag my iPad is in, and getting out my laptop seems like a lot of work (okay, and I’m not sure which bag it’s in either – funny how I couldn’t care less about all the bags I packed)…
And thank goodness for the holiday weekend movie marathon on USA… 🙂
Today has been a busy, crazy day.
First day on a normal diet, losing literally liters of fluids I’ve been retaining, got my central line (triple lumen) taken out, my little incision drain has just been flowing, no more IV pumping – just a peripheral line for meds and fluids. I have probably lost like 10 pounds today, no joke. The doctors want to send me home Tues or Weds, and I’ll come back up a week later for a checkup then a week later to get my 50 staples taken out. I’ll get labs done 2x/week at home. Sounds a little crazy… the doctors say I’m progressing so much faster than normal while I feel like I’m running a never ending marathon. The meds make me hot/cold all day, I’m a fake diabetic from the steroids (to decrease my immune system) which will be reduced in 3 doses, I’m on “self meds” now which means I learned my med list and schedule and give myself my meds as the schedule goes on. I’m kind of brainstorming to say things that are happening so I’m all over the place – sorry!
Thank you to Peg & Wil, Leslie, and my Wed PM Bible study girls for the flowers/balloons/monkeys that have come here and to the house. Thanks for all the cards pouring in, the phone calls, emails, blog comments… my parents and friends relay all the messages and everyone asking and checking and praying… Wow, thank you. And God is moving in a huge way, like I said… the doctors said I’m doing awesome. Of course I’m worn out and feel like I’m sitting here getting gross and rotting in the hospital, but now that my central line is out, I get to take a shower. (Which honestly sounds potentially painful because of how huge and nasty this incision is) I’m scared to go home because of all of the unknowns, the new rules, the new meds, but I’ll have a transplant coordinator on call 24-7 for any questions. What a relief. And they say my swelling is much lower than most people and going down well, but my honest opinion is that I feel like a whale. Gross, right?
So that’s about it… hopefully I’ll keep draining all this fluid and getting up more and more tomorrow. It’s hard work recovering from this! And the rules, my goodness. I can’t lift over 5 pounds for 6-8 weeks, 10 pounds for 6 months. I’m immunosuppressed, and they said it could be up to a year until I feel “normal” again. I’m hoping not. But we’ll see. I’m not done fighting yet!
I love you all so very much, and thanks for holding my hand and lifting me up through this incredible journey. They said I’d have trouble sleeping, but there’s a peace here all the time. May you feel some of God’s caring love, too, and rest in it for awhile. 🙂
One day at a time…