5 Years.

5 years seems so short sometimes.  Tiny babies grow to age 5 right before your eyes.  My dog is 11, and that happened out of no where! Has it really been 2 years since I’ve been out of the country?  My parent’s house is 19 years old? I can’t even believe Scott and I have been married for almost 6 months (what?!) Everything feels like it just happened.

But this week, time has stood still; it has felt like something so long, something so very substantial.

Monday was my 5 year anniversary of receiving my new liver.  I think back to what the past five years have held, and they have been full of so much.  I recently heard from someone that their mother had the disease I had (PSC) and it turned into cancer, which eventually took her life.  That’s the road I was on.  I was so close, and I barely even knew it.  I will be thankful for my donor every single moment of every single day because he quite literally saved my life.  I don’t know him, or really anything much about him, but I feel for his family who lost a son.  Perhaps a brother, a grandson, and a nephew. A friend, a classmate.  It is hard to celebrate knowing you’re doing it while another family is still grieving, and will grieve beyond the length of time.

5th transplantversary

But we do celebrate, even though sometimes bittersweet, we were able to celebrate on Monday night.  My husband surprised me with a big cookie cake that said “Happy Transplant-versary” on it, and we enjoyed dinner together and celebrated the life of a guy who was just turning a few years old the night I got “the call” for my transplant.  We were out for a birthday dinner to celebrate his sweet life, and I had no idea that it would be the last place I’d go, the last thing I’d do, until my phone would wake me up just past midnight on August 31 with the message that my organ was en route to the Cleveland Clinic and to get there as soon as possible.  I jumped into the shower, found some comfy clothes, and loaded last minute-items into my bag, knowing I’d be in the hospital for awhile.  Confident, but unsure of exactly what to expect, my parents drove me to waiting gifted surgeons, doctors, and nurses.

In a matter of hours, I went through something that changed my life completely.  A liver was a good thing, yes, but we would have a waiting period to see how well my body adjusted to it.  There was also the recovery period that the nurses told me would take about a year.  (I never did believe them until 5 months later when I tried to resume my bachelors degree in nursing.  I quickly believed them and put my life back on hold.)  My immune system would be affected forever.  I would start a new medication for life.  I would have lots of return appointments, CT scans, and lab work.  I don’t know if I’d be up for recovery again, and it did add a good amount of wear to my body, but as crazy as it sounds, it’s been worth it.

The hardest time in my life was worth seeing my sister graduate with her MBA.  It was worth being by my dad’s side after a bad accident landed him in the ICU.  It was worth me meeting Scott, my now-husband. It was worth going to Ireland with my college’s nursing school, and it was worth going to Switzerland and revisiting France with my college’s public health program.  It was worth all of the new people I’ve met.  It was worth being with Haylie as she’s grown.  It was worth being immunocompromised and getting sick more often than usual.  It was worth getting to plan my wedding with my super gifted mom.  It was worth it to be welcomed into Scott’s wonderful family.  It was worth it to get to live in my own house.  And it was worth finally being able to complete my baccalaureate degree after 9 years of fighting against my body.

Each day, I’m cautious about not catching any illnesses, and I need to get my sleep quota, and I still have psoriatic arthritis and get allergy shots and go to several doctors…  That’s fine though.  It may sound like a lot to you, but I’m used to it.  This has been my life for 23 years as I was diagnosed as a small girl. But I’m thankful that the Lord has allowed me to accept this as my life and that I’ve been able to make the best of it.  None of these days were guaranteed to me, so I can only see each new day as a gift.  Because if it wasn’t for my new liver, my days would have been limited.  They still are to an extent – I won’t live to be 1000.  But I went from a hopeless diagnosis to a lifetime of love and memories and gratitude.  That’s more than all right with me.

I like to think of my donor looking down on me and being proud of the experiences I’ve had.  He knows how thankful I am. I also like to think of my liver-sibling who received 1/3 of my liver as a tiny infant, and I hope and pray the child is a happy, healthy 5 year old today.  Our transplant was really so miraculous.  It’s a heavy gift that weighs on your soul yet lifts you up, somehow, at the same time.  Worth it.

And here’s to many more 5 years!!

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Grateful

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I am so deeply grateful to be celebrating my fourth “transplantaversary” today. Yesterday marks the day I entered surgery to receive a new liver, and today marks the day that I awoke for the first time with new life within me.

Without my gift of life, I wouldn’t have received the opportunity to love again, complete my education, visit new countries across the world, become a godmother, meet new friends, touch more lives, or savor every ordinary day.

The journey has – at times – been treacherous and almost too much to bear. There has been fear and pain. But today, I live a beautiful, charmed life that has only been possible due to the generous gift of my organ donor and his family and the support of my family, friend, and even strangers around the world.  There aren’t enough words to express my gratitude.

Please consider signing up to be an organ donor, if you’re not already. It’s a pretty simple, yet empowering thing.  Just go to this website and sign up. Next time you renew your license, make sure that they put the tiny heart symbol on it, signifying your wishes. And most importantly, tell your family so they can authorize it when you’re not longer able to do so yourself.  120,000 people are waiting for what a lot of us take for granted.  18 of them die each day because there aren’t enough organ donors.  By signing up to be a donor, you can save up to 8 lives and heal up to 50.  Once you die, you won’t need any of your organs anymore, so why not share them with someone less fortunate than you? Think about it…  Feel free to contact me with any questions you may have.

With love and gratitude,

Amanda

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Always hope

Today, I’m low on words.

Two years ago tonight, I received a new liver, and my life was forever changed. I am so thankful for my donor and these 730 days of new life.

Each day is a joy and a challenge, a battle and a dance, yet full of grace to last until the next.

Always hope, loves.  Always.  Each day is beautiful; each day is a brighter day.

Amanda

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.

Eleanor Roosevelt

Tonight, tomorrow & the future

Tonight, no sleep will come.

Tomorrow is my one-year transplant anniversary, or transplantversary, and so much heaviness surrounds me.  I cannot keep discerning the good memories from the bad, the blessings from the trials.  It’s all a blur in my head right now, and I cannot find rest.

Tomorrow is also a long day for me at the Clinic.  After the battle of waking up at 5, I have a very important ultrasound and CT scan.  It’s time for my second “tumor marker” labs to make sure the tumor that grew on my old liver hasn’t reappeared on my new liver – or anywhere else, for that matter.  Additionally, as I said in a previous update, my surgeon discovered a major blood vessel connecting to my liver is narrowing.  It could be a temporary thing, or it could be a more permanent danger.  The problem is that while the vessel is narrowing, or constricting, blood cannot access and/or leave the liver without extreme pressure and an increase in liver enzymes.  If the scans show the narrowing is still there, or worse, I will need surgery to open the vein.  

Needless to say, I am done with all this.  I do not want a tumor and I do not want a constricted vessel that needs to be opened.  However, this past year, I’ve really learned how our needs are vastly different than our wants.  

The LORD is my light and my salvation; [what] shall I fear? the LORD is the strength of my life; of [what] shall I be afraid?

Psalm 27.1

…Reflecting on the past, praying for the future, knowing the Hand that brought me through the past 365 days will get me through the next.

Check back tomorrow for whatever I can think of to say on my official Transplantversary.  😉