Praise God from whom all blessings flow

I’m at a loss for words.

How do I express how grateful I am for all I’ve been given?

How do I even begin to say how thankful I am for another year of life despite so many threatening obstacles?

Feeling gratitude and not expressing it is like wrapping a present and not giving it.
– William Arthur Ward

Here’s my most honest attempt…

I’m grateful to a family who chose to give life after they lost a life. I’m grateful I woke up each time I went under anesthesia this year. I’m grateful for this family I’ve been given, these friends I’ve been blessed with, these days that fly by too quickly because they’re so full of joy.

Each moment I have is a gift. Each breath, each day… I’m so blessed.

I’m grateful for all of your support and love through the past year and a half. I’m grateful I get to spend today and this weekend with those I love.

I’m thankful I have a guardian angel and have been brought through some things this year that could have been ended up so much worse.

I’m so thankful for providence.

I’m just overwhelmed with emotion when I think of what I have been given. These gifts – physical life, eternal life, relationships, material possessions.

Praise God from whom all blessings flow!

Happy Thanksgiving. Savor this day and these moments.

Love,
Amanda

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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. 🙂

Thankful for LIFE

Give thanks to the Lord, for He is good.  His love endures forever… When hard pressed, I cried to the Lord.  He brought me into a spacious place.  The Lord is with me.  I will not be afraid.  What can mere mortals do to me?  The Lord is with me.  He is my helper.  I look in triumph on my enemies.  

I was pushed back and about to fall, but the Lord helped me.  The Lord is my strength and my defense.  He has become my salvation.  The Lord’s right hand has done mighty things!  I will not die but live, and will proclaim what the Lord has done.

I will give you thanks, for you answered me.  You have become my salvation.  The stone the builders rejected has become the cornerstone.

Let us rejoice today and be glad.  

Give thanks to the Lord for He is good.  His love endures forever.

– Excerpts from Psalm 118

Thanksgiving remains one of my favorite holidays because it reminds me that every day should be spent being thankful for what we have.  And in the last few years, I’ve really grown to recognize that we all have so much more than we could ever completely realize.

Each year, I really like to make “Thankful Lists,” but this year, I really don’t know where to start.

After all, what’s not to be thankful for?

No struggle, no matter how large or difficult, isn’t meant to be or doesn’t become a part of who you are.  You can either grow from every situation, or you can become bitter and ungrateful.  It’s your decision.  That’s something to be thankful for in itself.

I’m so thankful that we all have that opportunity.  The last few months have been so difficult, and the last year has been nothing short of treacherous.  What a ride.  I lost my fiance, I lost the opportunity to go to college, I was in the hospital for everything from a nervous breakdown to chemotherapy, and I received a liver transplant… after which I lost my health, my independence, and my dignity.  But do you know what I didn’t lose?  My God.  My hope.  My peace.  Whether or not I chose to accept what has happened, I am so thankful God somehow got me through all of it.  I am thankful our Lord has a greater plan.  I know I didn’t always make it easy on Him, let alone myself.  But here I am.  Beautifully, wonderfully stronger than before.

More specifically, I’m thankful for the unconditional love shown my so many family members and friends.  I’m thankful for the acquaintances who became important members of my life, forever pieces of my heart.  I’m thankful I lost my fiance in January, even though it almost killed me.  I’m thankful I wasn’t able to finish spring semester as I know it was meant to be.  I’m thankful I got to go to Disney World, one of my favorite places in the world, before my life would change forever.  I’m thankful I was diagnosed with hepatocellular carcinoma as early as I was.  I’m thankful that chemoembolization destroyed the tumor on my liver.  I’m thankful I was listed for a transplant at such a great medical facility as the Cleveland Clinic.  I’m thankful I had the opportunity to lead Team Race for Amanda in the LifeBanc Gift of Life Walk & Run.  I’m thankful for everyone who came and how much we were able to raise.  I’m thankful for the support I’ve found in Akron Canton TRIO, Transplant Recipients International Organization.  I’m thankful for my new online and real life transplant friends. I’m thankful the parents of a critically injured young man chose to donate his life.  I’m thankful for him and his family every morning when I wake up with a new day before me. I’m thankful my liver was shared with a three-month-old infant.  I’m thankful I woke up from surgery on September 1 – and am here living to tell about it two months, three weeks, and four days later.  I’m thankful I only stayed in the hospital one week.  I’m thankful for a family and dear friends who were there every step of the way.  I’m thankful I only ended up in the ER twice after my surgery.  I’m thankful my incision finally healed.  I’m thankful I’m slowly adjusting to all of the new medications, and I’m thankful I’ve been weaned off the highest doses and most frustrating meds.  I’m thankful – and completely humbled – that my story has touched lives.  I’m thankful I got to go to two big concerts with my sister – Lilith Fair in July and Carrie Underwood in October.  I’m so thankful that both of us got to meet Carrie Underwood. I’m thankful that I have so many families in my life – through the children I nanny – who I can almost call my own.  I’m thankful for the honor of witnessing and impacting the lives of so many little ones.  I’m thankful to live in a free country protected by so many selfless individuals across the world, fighting for our freedom.  I’m thankful for shopping online and thunderstorms and random calls from friends.  I’m thankful for the opportunity to go back to school.  I’m thankful for my voice through my blogs, the people I meet, nursing publications, and opportunities like being a guest panelist in a chronic illness college course.  I’m thankful for new connections and a bright future.  I’m thankful for the literal gift of life and how I have a renewed health and many more years of life… all because of a young man I’ll never meet.  I’m thankful for safety and peace, comfort and joy.  Most of all, I’m thankful for the grace and protection of such a loving God.

This year, please join me in being thankful for all that is life – the good and bad days, the good and bad years, the trials and pain, the triumphs and joy.

Remember our promise…

Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.

Matthew 11.28-30

We are so blessed.

Happy Thanksgiving.

Much love,
Amanda

PS – A similar but different Thanksgiving post is on my blog – Gratitude & Thanks

Photo: Associated Press.  Happy 4th of July to everyone!  I’m finally feeling so much better thanks to the relentless prayers of all of you, my friends and family, and even complete strangers.  Thank you so much.  

May we never take our various freedoms for granted, and remember, In God we trust.