A gift

Stacy Kramer, and TED, thank you so much for this.

I wouldn’t change my experience.  It profoundly altered my life in ways I didn’t expect… So the next time you’re faced with something that is unexpected, unwanted, and uncertain, consider, it just may be a gift.

Stacy Kramer, brain tumor survivor, so eloquently told the story I’ve relayed to countless individuals.  I think a lot of us who endure life-threatening illness come out to see what a gift it was.  As I’m sure it was for her too, many of my nights were sleepless; there was a lot of pain. I wondered a million times Why me? How can I get out of this? Please, can someone make this stop?!  But standing on the other side of the whole ordeal, as I am now, it’s so much easier to see how the longest days would make me a better person in all the ways I needed, introduce me to hundreds of people I could learn from or impact, and teach me that there is more to life than anyone ever had thought.

So grateful for my gift.  I wouldn’t wish it upon you (you wouldn’t be able to see it was a gift until it was all over anyways), but I’m thankful to God that he brought my scariest, darkest, most painful experiences into something I’m now so grateful for.  May His light keep shining through the darkness.

2012 Gift of Life Walk & Run

I need your support!

Have you ever been touched by organ donation?  If my family or I have ever inspired you, helped you, or just made your life a little better, then you have.  Perhaps you don’t know me that well, but you know someone else who has been blessed by organ donation.  Please support me in my 3rd annual Team Race for Amanda walk/run benefitting Lifebanc, Northeast Ohio’s organ donation/procurement agency.  I am so passionate about this non-profit organization that I volunteer my time and effort to join them in educating about, fundraising for, and advocating organ donation.

This year, the walk is on Saturday, August 11.  This is such a fun event, and it couldn’t be for a better cause.  This is one of my favorite days of the year for so many reasons.  Please join us and see why.  I promise you’ll feel inspired, uplifted, and fulfilled.

Last year due to my splenectomy, I wasn’t able to crusade for this as I did for our team’s first year.  I also believe people weren’t as supportive because unlike the previous year, I wasn’t waiting on a liver to save my life.  But each day, I am most definitely not less grateful for this gift of life.  My gratitude only grows deeper and deeper with all of the experiences my life has been full of since September 1, 2010. I am so grateful to be alive, and my heart aches for the 18 people who die daily waiting for an organ.

All of my team members (and only MY team members!) will be entered to win 2 Cleveland Indians tickets if registered by July 1. (The game is July 8.) I love you each and every one of you and appreciate your support in this.  Your sacrifice to support organ donation – the reason I am alive today is in the deepest place of my heart, more than words could ever convey.

Also new this year will be Team Race for Amanda t-shirts!  Yes, that’s right. Be excited!! They will be made if I have to fund them myself.  (Hopefully it doesn’t come to that…!)  All team members will receive one to wear the day of the event in addition to an event tshirt from Lifebanc.

Below is a video about Lifebanc, followed by a video of our race last year.  To read about my story and to sign up for my team or make a donation, please visit my team page.  The last video below is one that was made two years ago, while I was waiting for my organ and rallying a team for this event.  It’s amazing to think of how far I’ve come.  Again, there just aren’t enough words.

In the coming weeks, I will be posting a new video (if I conquer the iMovie vs. Amanda feud), photos, and more information to build excitement about this wonderful celebration.

Please sign up by July 1 because I’m excited to give these tickets away!  (If you sign up or donate post-July 1, you are still more than welcome!  You will just miss the ticket raffle.)

Two steps forward, One step back

Wednesday was a long day for us, but this is all part of the journey, so here we go…

(As I munch on a farmers market brownie that has an odd taste like it was sitting on pizza in the fridge or something?)

Thanks to everyone’s prayers, Haylie was fine after taking my antiviral pill.  She stayed overnight at the vet for fluids and observation, but we were able to pick her up before heading to Liver Clinic (Wednesday afternoon on CCF’s transplant floor) Look at her little bandage where her IV was (below). Poor baby!

Liver Clinic (Wed) was predictable.  You set up appointments beforehand with the transplant social worker, transplant psychiatrist, or transplant coordinators – whomever you want – plus of course the surgical team. To try and condense my story, the surgeons said my incision looked great, even though it has 2 small spots which are questionably “too open” in my opinion. They surprised me by taking out every other staple and replacing them with Steri-Strips.  The staples were really pulling and being uncomfortable, so I was grateful even to lose half! Then there are the 2 stitches, one for each JP drain that was collecting serosanguinous fluid while in the hospital. Peter, our adorable, caring, Australian fellow removed both stitches as well, and other than all that action on my abdomen leaving me sore, it all went great, and I should be able to get the remaining staples out next Liver Clinic. One week!

My pathology report on my old liver came back and we were elated to hear the news. Thanks to your prayers and our good God, the chemoembolization DID get all the cancer in the liver, and none of it spread to the lymph nodes, which would have been a big concern.  The report did, indeed, confirm I had a serious case of Primary Sclerosing Cholangitis, and it also showed my new donor liver was in tip-top shape!

I met my post-transplant coordinator who will follow and help me for the rest of my life, and she is such a smart, sweet woman.  Her name is Molly, and she works behind the scenes to make life as a patient easier. I met her co-worker, too, who covers for her sometimes, and after passing by my scheduler in the hall, the 4 of us got into a 30 minute shopping conversation about deal websites, flipflops, and tips to make my wardrobe work with my massively swollen abdomen, other than racking up a tab at A Pea In The Pod or Motherhood Maternity!! (Joanna, my scheduler, says it’ll be a month or so until I lose my “baby bump”… not funny!) anyways, everyone says you’d become like family to your team and we definitely have!

We left around 4p with everything going well. I passed Dr. Hupertz, my peds GI, while waiting for Mom to pick me up, and she raved at how well I was doing and encouraged me like she always does.

The car ride was great since I was able to sleep the whole way, but things got bad when we got to my driveway and I saw that the whole side and bottom of my cute lavender top was wet.  I stood up, and fluid literally started spurting from where the doctor removed one of the drain stitches.

Nice.

It was after 4.30pm by then, so I had to page the” liver transplant coordinator on call”, which thank goodness was Molly! We discussed the amount of fluid I’d lost (rolls of paper towels, absorbent medical pads, etc.) and decided a precautionary trip to the ER would be the best idea.

Fast forward to 2am, after some Zofran, morphine, and dilauadid … Labs.. CTscan… All looked normal for a post-surgical patient, so still dripping and oozing, they finally let me go! They found one abnormality in the CT but they were going to clear it with my surgeon, Dr. Fred, in the morning. (And yes, it ended up being normal)

Now if we could just get the fluid to stop leaking… (Although it’s better out than in!)

Oh and we saw 2 separate friends/families we knew in the OR. Please pray for their peace and healing. We already know God is good!

So fast forward to Thursday AM – Mon and Thurs are lab days where I go to my local lab and they overnight some of the rarer tests to the Clinic to save me 2-3hrs twice a week. I barely got to the lab awake, and by then Mom had talked to Molly who had talked to the surgeons… They wanted to see me, yes, back in Cleveland.

Long story short, Dr. Peter had to restitch the drains (even the non-leaking one – just to be sure) and hopefully everything will be healed enough by Wednesday to get the staples and sutures out.

Today, Friday, I’m feeling better – tired and sore, but better. My cousin and her boyfriend came over last night, Grandma and my aunt were here, and Haylie finally got her much-overdue haircut.  I have more visitors coming Saturday and Monday, so that’s exciting.  They help pass the time and it feels like forever since I’ve seen everyone.  I’m hoping in a week, I’ll be stitch/staple free, more healed, and up to a little more.

One day at a time!


(I’m off to take advantage of my Netflix and Roku box while I just might fall asleep!)

Oh and a before and after of Haylie – first confused, missing her mommy, then in the hospital herself, seen here with a bandaid from her IV from her overnight stay at the vet, scruffy hair from Mommy being in the hospital for a week… The the after picture:  after going to Aunt Nancy’s and getting a bath, a haircut, and a festive little bandana.  She feels much better now that she’s all pretty (and back to her sassy self)…

IMG_0820fsx IMG_0831fsx
Thanks so much for your prayers and cards.

xoxo
Amanda & Haylie 🙂

2010 Lifebanc Gift of Life Walk/Run

What a wonderful day!  I coudn’t resist but to vlog about it, so here I am telling you about the LifeBanc Gift of Life Walk/Run, waiting for my liver, and some other things.  For those who were at the race and want to download the photos, check out my Flickr page.  🙂  xoxo

If you can’t watch the video, here’s the transcript:

Each state, or many areas of larger states, has an organ donation and procurement agency which promotes organ donation awareness, assists UNOS in organ procurement, and is an asset to both donor families and recipients.  I became involved with them last year, became trained as an Ambassador, but was never healthy enough to run any events.  I promised them after my transplant, I’d get going in health fairs, school classes, helping any way I could, and it is my very intent to.  The organization is a HUGE reason getting a liver is possible for me.

Today was the 12th annual LifeBanc Walk & Run, 2010.  Seeing I’m an active participant in this organ donation process (whether I like it or not) this summer, I figured a good way to spend my time would be to organize a team and raise money for the organization that is so dear to my heart.

Today, I saw the efforts of myself and thousands of others come into fruition, and we had an absolutely wonderful morning.  

Thank you from the bottom of my heart to those who personally joined my cause.  Thank you to my parents, sister, Meg-O, Dave, Lydia & Dawn Weissling, Lydia’s friend, Paula Balazs, Ryan & Kelly Jacops, parents of two angels I sit for, an old friend Sarah Walker and her sister Lisah Franklin, my Uncle Kirk, and Heather & Hailey (TRIO member Ray Golden’s daughter and granddaughter) two of my new friends at TRIO (Transplant Recipients International Organization).  Thank you for joining a team that started out with one participant with a single goal of furthering organ donation in our area.  Thank you for paying the entry fee and then showing up and actually walking (or running!) to show your support.

To many of my loved ones, many people I don’t even know, I humbly thank you for your donations.  To my Uncle Keith, Paula Balazs, the Meachams, Selena Inouye, Janet Goodwin, Panther Expedited Services, Inc., Uncle Tim & Aunt Linda, Sandra Jones, John Stucky, Lynn Eckelbecker, Stewart Witt, Rocco Surace, Chris Carrigee, Karen Studebaker, Marci Eversole, and my Aunt DiAnn. 

Thanks whose who sacrificing your money and in all, helping me raise $1,345 for LifeBanc.  Your amounts – small or large – made sure you were part of this Team, whether here or in spirit.

Thanks to all of you who wished me well, said you wished you had the money to donate or participate, or said you’d be thinking of Team Race for Amanda on Race Day.

Thanks to everyone who cheered loudly, or in spirit, when the LifeBanc announcer read off the roster, “Team Race for Amanda!”

I may have gotten winded (a mile is hard for me these days) and for walking long distances like the Cleveland Clinic, sometimes I need a wheelchair, and yes I usually need a cot to lay on at church, but today, I walked my 1.5k and I walked it well.  I’m proud of myself for trying such a daunting feat for someone in liver failure.

But enough about that….

In my heart and soul, I can now get my liver.  My last “big event” of the summer is over, and it was amazing.  Honestly, I never even thought I’d make it through mid-July, but here I am, still waiting.  Right now, I am at peace with each day God has given me, and I feel so uplifted and supported even though I do question where my liver is. I feel I’m ready to go with this.  Please pray my trial maintains a steady pace with no unforeseen challenges, and pray that the Lord brings me out safely.  Pray my journey is one of hope and healing, that I will come out on the other side ready to soar.  Pray that I encourage every soul I pass.  And-  Pray for a “little” liver just for me.

Thank you to everyone who is holding my hand along the way.  I love each and every one of you.