Update & Pieces

Happy Weekend to all of you!  I’m leaving for Chicago for a long weekend and wanted to give you an update beforehand.

I’m thankful to report that life has been pretty stable for me since the pneumonia/low WBC incident.  It hasn’t been better, but stable is more than I can ask for right now.  Very tired and weak but trying to adapt as much as possible.  Hoping in my heart of hearts that the surgery August 5 will be exactly what my body has needed all this time.  Praying stable will be a new level for me after I recover.

I always tell people how God gave me such a peace last summer while waiting for my liver.  Yes, I had questions and I definitely had “my moments,” but overall, I was calm, just waiting for the inevitable.  Praying my gift would come before another tumor moved in.  Trusting God Himself held my future and safety in His hands.

This time around – I was, at first, very scared and mostly angry that once again, it’s me who has to go through something, how less than a year after the most difficult surgery possible, wondering what I did to deserve this, it was again my time for major surgery.  More staples and scars.  More fear and helplessness.  More ICU and lines and clinging to a pillow and not being able to get into my own bed.  What was going on?  Was this really right?  But again, peace has moved in to my heart.

Do I like what’s ahead on my path?  No.  Am I excited for what’s happening in a few weeks?  No.  Would I have chosen this for my life?  No.  But it has to fit in somewhere and one day be to the glory of God.

The God of the Universe has a plan that’s greater than anything I’d ever be able to dream up for myself.

Isaiah 55.8-9

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.  ”As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts as your thoughts.”

And that, I believe is where God’s Word in Proverbs 3.5-6 comes in:

Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge Him, and He shall direct thy paths.

Until we get to Heaven, there will be suffering.  There will be questions without answers.  But He promised… 

Hebrews 13.5b

…for He hath said, “I will never leave thee, nor forsake thee.”

Thanks for staying tuned to this crazy ride I’m on.

Love to you all,
Amanda

Threats

My Christmas Tree

I packed my hospital bags today… My “day bag” for Thursday’s biopsy/testing as well as my “long stay” bag just in case.

I’ve been through the ups and downs of illness for so many years that I’ve learned to have hope while always being prepared.  Both are key.

As I explained in my last post, my body is rejecting my new liver.  This could be minor, or it could be a big deal.  We won’t know until Thursday.

In an attempt to solve the problem, last week, my doctors added an anti-rejection med that they had previously taken me off of due to side effects.  Apparently, it isn’t working as my labs on Monday came back worse than before.  We are looking for clues on Thursday, despite the fact that one of my lab values might interfere with getting the biopsy done in the first place.  My INR, which measures blood clotting, is 1.5, and above 1.5, the surgeons won’t do the biopsy. Liver disease affects INR values, which is quite possibly why mine has risen.

I was doing great just over a month or so ago.  I was finally feeling energetic after my surgery, and I was impressed how well I felt – better than ever in my life!  Then slowly, I started feeling fatigued.  Next, I was taking 2 naps/day, reminiscent of my life with liver disease.  My abdomen started swelling, and I found petechiae (tiny broken blood vessels) on my skin, again, symptoms of liver disease, symptoms I had almost forgotten about since my transplant. Then I experienced itching, the hallmark of liver disease.  I knew something was wrong, but I couldn’t figure out what.

When my transplant coordinator called me and told me how high my liver enzymes were and how all signs indicated rejection, I knew.  And these symptoms still plague me even as we are trying to properly diagnose the problem and treat it most efficiently.

The disease I had been miraculously saved from just a few months ago, is now apparent again every day of my life.  I know it’s not the same disease – only symptoms of an aggravated liver – but it’s still frightening.

I finally got a new lease on life, a chance to be healthy, a chance to live a normal life.  I fought back from a treacherous surgery as a brand new life dangled in front of my eyes.  I had more energy, clearer thinking, and set up plans for my encouraging future.  Then in an instant, nothing was certain.  Nothing is certain.

Will I be well enough to resume school in less than 2 weeks after all I’ve fought through to maintain my standing?  Will the rejection really go away?  My team and transplant friends say rejection is common in the first year post-transplant, and it’s usually treatable, but this still feels wrong.  

Who gave me this gift of a new life – only to threaten taking it from me?

So what are the treatment options?  If it’s minor rejection, I will get oral steroids at home or a few doses of IV steroids in the hospital.  If my body goes out of control and the IV steroids don’t work, I will stay in the hospital so the doctors can treat me carefully until my labs become stable.  Additionally, the longer my enzymes are elevated up, the bigger risk to my liver it is.

I feel violated, afraid, and unsure.  I’m anxious and reaching a point where I’m tired of pretending everything is still fine.  I absolutely love the holidays, and this year I’ve tried to enjoy them because I have so much more to be grateful for, but this rejection issue has remained in the back of my mind throughout.  Tomorrow night is my big, annual Christmas party, and while preparation has been taxing on my weak body, I’m mentally exhausted as well.  The fear is so present.  Plus, it will be a late night with lots of people to be happy for.  I try to portray a picture of health and gratitude as always, and you all know how much I adore my loved ones, but with all this uncertainty, it’s so hard.  Even my favorite things are becoming hard.  I guess it’s not the first time.

Please pray for grace, peace, and courage.  Pray for good results and quick healing.  Hug your loved ones and be grateful you have them.  I know my mind can go a little out of control, but my worst fear is not being around anymore.  Since I love life more than some people, I feel I deserve it the most.  Is that so wrong?  If only people could realize what they have.

Thanks for sticking around.  I love you all so much.

Amanda

PS – The photo above is of my Christmas tree.  My mom lets me put it in our dining room since it won’t fit in my bedroom.  It’s pink, of course, and I keep only pink/white/silver/neutral ornaments on it.  A lot of my ornaments have very special meaning, and I take great pride in making it pretty every year!  Just wanted to share it with you, my dear friends. 🙂

Self-acceptance comes from meeting life’s challenges vigorously. Don’t numb yourself to your trials and difficulties, nor build mental walls to exclude pain from your life. You will find peace not by trying to escape your problems, but by confronting them courageously. You will find peace not in denial, but in victory.

Swami Sivananda