An update & a prayer request

To all my dear friends who read this,

I just wanted to say hi and give you a quick update.  A few of you have become concerned at the lack of updates, so I figured I’d write a quick note.  And apologize.  🙂  As my previous post (the quote) mentions, the days have been flying by, all together too short!  

I’m so grateful that my recovery has been a bit miraculous, and a great part of that means I’m back to normal life already.  Or at least I was. (More on that later) I’m back nannying full-force and even have a special family for a couple weeks that I’ve really been enjoying being a part of.  Plus, the present holiday season and preparing to restart school in January have both been occupying a lot of my time.  I got my driving and lifting restrictions lifted earlier than expected, and I was enjoying living a full life until I experienced a setback yesterday. Hopefully, it should be over by next Tuesday, but in a world where doctors are obsessed with legally covering themselves, and healthcare personnel rule their patients’ time and lives, who really knows?  I would really appreciate your prayers that this gets worked out and, ultimately, ends as soon as possible.

For anyone interested in transplant meds, I’ve been on Prograf since my transplant.  I started at 1mg 2x/day, then the doctors later prescribed Cellcept 250mg 2x/day on top of that, as well as raising the Prograf to 2mg 2x/day.  I just found out this week that ever since I started the Cellcept, there has been a steady decrease in my weekly labs’ white cell count and platelets.  My doctor is having me stop the Cellcept to see what my labs do, as Cellcept can cause both those drops.  We’re predicting now that we stopped Cellcept, my levels will rise back to normal.   I hope so because Cellcept left me in a constant state of nausea, and I’d love to stop it forever.  As a precaution with stopping the Cellcept though, my doctor upped my Prograf again so now it’s at 2.5mg 2x/day.  I’m convinced Prograf is what’s causing the weird symptoms that I’ve been noticing since I got out of the hospital… things like losing more hair than normal and even breaking out more than normal.  (And normal is pretty much never, so it’s been frustrating!)  I think both are slowly getting better, with the exception of my hair being a complete mess – I think the hair I lost when I did the chemoembolization (which was a minimal amount, thank God) is regrowing in now so I have baby hairs that stick straight up in the winter dryness, and the texture overall is just not what it normally is.  It’s very frustrating to me.  

Also frustrating to me is is the fact that I cannot partake in my one and only unsafe addiction, the tanning bed in wintertime. Apparently, the anti-rejection med (Prograf) and the antibiotic I’m on can make any sun, real or fake, really damaging.  I could get burnt and even get skin cancer much easier now.  I’m beginning the spray tan adventures next week (much more expensive than I thought they’d be!) so I may just have to tell you how that goes.  To have a constant tan, you’d have to go every week, which I am NOT doing.  I paid for 3 visits so it better not turn me orange.  🙂

On another note, my incision has been completely healed for a few weeks now, and I’m still grateful for that every single day.  I’m not having much incisional pain at all anymore, and my energy levels are actually a little higher than pre-transplant.  It’s surprising how I can wake up in the morning and be awake and alert, ready to start a new day.  I’m realizing I used to live in an almost constant state of fatigue.  My doctor told me I’d be surprised to see what life was really like after the surgery, and I’m finding that to be true.  I’m hoping everything will continue to improve as I finish healing.  Everyone says you’re not your your full self until at least a year post-transplant, so I’m excited to see where the road leads…

I’m trying to get a post together for Thanksgiving, so until then… be grateful for every breath you take, every moment you live, every person you meet, every place you go.  And please, give back and give life.

Love,

Amanda

God is within her, she will not fall; God will help her at break of day.

Psalm 36.5, and probably one for the “top favorites.”  

On another note, yesterday was a really good day. I got to run errands after labs, go out to lunch with my mom and sister, and have a big dinner with my family, including my uncle, cousin, and Poppop!  (Click to see pictures)

Anyways, God hears our hearts, and He hears our (your) prayers.  Thank you from the bottom of my heart for all the prayers you’ve prayed on my behalf and all the love you’ve poured out onto me.

And just to sneak in an update, my homecare nurse came today and was shocked how well my incision is healing.  Keep praying because when it’s healed, I can drive again!  😉

Love,
Amanda

Liver Transplant Update #7: Sunday – Getting Better!

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…

Amanda

Liver Transplant Update 4: Post-op

Been out of surgery since 1:30 am Tues PM/Wed AM. Thought I updated but must have forgotten… Sorry for the delay. Tired and sore, but the breathing tube was out by maybe 10hrs, and I was moved to the transplant floor by just last night. My IV line, Foley, A-line, and large bore tubes are all out. All I have is a triple lumen PICC line, O2 running, and 2 JP drains to drain out any left over blood/bile/etc that could be in my abdomen. Overall, the doctors and nurses are astounded at how well I am doing! I should still be up in SICU hooked up to anything imaginable when really, I’m tolerating a liquid diet and walks up and down the hall!
Granted, I’m very uncomfortable but am on many pain meds and have lots of people praying, emailing, calling, and visiting. (Jen, Aunt Lisa & Uncle Mike have been here so far! In SICU, I ran into a mom I used to sit for who is a nurse here as well as a chaplain who is “uncle” to one of the itty bitties I watch 2 days/week. He gladly informed me he had been filling in for me and wanted to know how long it’d be since he’d have to do more babysitting!)
So that’s the update.
Thank you so much for all of your prayers. Remember how well I was, am, and will be. No accidents …It could only be God!

Amanda