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. 🙂

Good News

In preparing for my 3-month-scan and labs to make sure the tumor that triggered my transplant hadn’t returned, I found two journal articles.  (Yes, I’m a nursing student who has a penchant for research.)  I read Getting a Handle on Posttransplant Recurrence of HCC and Adjuvant Treatment After Orthotopic Liver Transplantation: Is It Really Necessary?, the second of which I noticed was co-written by the surgeon who performed my transplant.  Very cool.  And regarding my labs, I wasn’t exactly sure what “tumor markers” were, so I brushed up at the National Cancer Institute.

My own personal conclusion was that I had/have a low recurrence rate due to the characteristics of my tumor.  That calmed my nerves, so we were off to a good start.

This morning I had my CAT scan followed by labs to screen for “tumor markers.”  If you’re interested in medicine, check the link above.  If not, suffice it to say they’re something in your blood that can signal whether or not there is a tumor present in your body.  

By afternoon, most of the scans had been read and the conclusions of 3 surgeons were this: (And yes, this was complete news to me.)  No where in any of my tests, labs, reports, etc. did it ever say the tumor (which was found in May) was definitely cancer.  Due to the location of the tumor, it could not be biopsied and diagnosed as cancerous or benign.  Therefore, it was assumed to be cancerous, specifically hepatocellular carcinoma to err on the side of caution.  Remember, it was never in fact proven.  In June, I received chemoembolization, chemo directly targeted at the tumor and not the rest of my body.  When my old liver was removed September 1, some lymph nodes were screened for cancer, and none was found.  To sum all of that up, my tumor may have been completely benign.  Yes, it may have been cancerous, and the chemo may have just cured it. But the catch is this, chemoembolization is rarely successful with just one treatment.  We will never know which the tumor was, so even if I am at risk of recurrence or any kind of cancer coming back, it’s a very small risk.  Because it may not have ever been there.

That was a lot to take in while it was a relief as well.  The day after I had the scan that found the tumor, my doctor said it was cancer.  It would have been nice to know that she wasn’t sure and had no way of knowing from the location of the tumor.

But I digress.

The scans today were completely clean, and because of that and the realization the tumor likely was not ever cancerous, I’m now off the protocol treatment and don’t have to get scanned for another 6 months, then every year for 5 years.  That’s a lot better than 3x/year for 5 years.  And it’s so much better to know that the tumor wasn’t positively cancer.  They can never say never since nothing was proven or tested either way, but the tumor was likely non-cancerous.

Sigh of relief.

So God is good, and while we don’t have answers to a lot of things, I really do believe that everything happens for a reason and works out for good.  Somehow I beginning to believe the people who say I’m a walking miracle.

Thank you for your prayers, Tweets, comments, emails, texts… I felt so supported and at peace today.

Love always,
Amanda

PS – My WBC and platelets are still low (we’re watching them to see what might be the cause) but my liver numbers are all perfect.  I don’t know if they’ve ever been perfect.  So grateful.

3 Month Update & A Prayer Request

Hi everyone,

Just a little update and a prayer request below.

I’m doing so great.  It’s been 3 months since my surgery, and I can’t help but reflect on where I’ve been.  Thinking back on my life with liver disease, waiting for the transplant, the surgery, the pain and horror, the blessings and overcoming… I’m still taking it all in.  Every time I see the huge scar on my abdomen, I want to complain and wish it gone, but then I remember it’s a symbol of where I’ve been and the story I have to share with the world.  This story, this journey, is not just about the 12” of scar I have going in 3 directions – it’s entwined into every part of my being.

Yes, of course there have been setbacks, but I’m used to them.  Not too much phases me anymore.  I’m grateful for this new peace I have.  Whatever comes, comes.  I think I finally understand the resilience you see in people who face huge trials.  Once you’ve been through so much, you are accustomed to fighting, struggling, and don’t fear the future.  You’re so thankful for the calm times but aren’t worried about the storms. After all, if you’ve already been through the worst, how bad could the future be?

This week, one of the surgeons officially cleared me to resume nursing school in January, so barring any complications with the College of Nursing, I’m good to go.  I’m so excited to dive back into what I love so much, with more compassion than ever.  I have some fears like “What if I forgot it all?” “What if I haven’t recovered enough?” but my heart knows it’ll be just fine.

Wednesday is a big day for me.  It’s time for my 3-month-scan to make sure the tumor hasn’t returned.  If you remember, I was diagnosed with Primary sclerosing cholangitis (liver disease) at age 5, and I was transplanted because it turned into a tumor in May of this year.  Chemoembolization eradicated the tumor.  While the pathology reports on my old liver and lymph nodes showed there were no signs of cancer, as a precaution, I have to have scans and special labs done every 3 months for the next 5 years just to make sure it hasn’t come back.  From what I understand, it’s just a contrast MRI (which I’m used to) as well as testing for “tumor markers” in my blood.  I really don’t know that much about it, but of course, I’m eager to learn.  I’m honestly a little scared about it simply because I don’t want to go through all of this again.  Please join me in praying the tumor is gone for good and that I continue to recover quickly.

I love you all, and please remember to take time to be grateful for life during this busy, stressful season.

Amanda

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

Gratitude

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

Melodie Beattie, author

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