An update & a prayer request

To all my dear friends who read this,

I just wanted to say hi and give you a quick update.  A few of you have become concerned at the lack of updates, so I figured I’d write a quick note.  And apologize.  🙂  As my previous post (the quote) mentions, the days have been flying by, all together too short!  

I’m so grateful that my recovery has been a bit miraculous, and a great part of that means I’m back to normal life already.  Or at least I was. (More on that later) I’m back nannying full-force and even have a special family for a couple weeks that I’ve really been enjoying being a part of.  Plus, the present holiday season and preparing to restart school in January have both been occupying a lot of my time.  I got my driving and lifting restrictions lifted earlier than expected, and I was enjoying living a full life until I experienced a setback yesterday. Hopefully, it should be over by next Tuesday, but in a world where doctors are obsessed with legally covering themselves, and healthcare personnel rule their patients’ time and lives, who really knows?  I would really appreciate your prayers that this gets worked out and, ultimately, ends as soon as possible.

For anyone interested in transplant meds, I’ve been on Prograf since my transplant.  I started at 1mg 2x/day, then the doctors later prescribed Cellcept 250mg 2x/day on top of that, as well as raising the Prograf to 2mg 2x/day.  I just found out this week that ever since I started the Cellcept, there has been a steady decrease in my weekly labs’ white cell count and platelets.  My doctor is having me stop the Cellcept to see what my labs do, as Cellcept can cause both those drops.  We’re predicting now that we stopped Cellcept, my levels will rise back to normal.   I hope so because Cellcept left me in a constant state of nausea, and I’d love to stop it forever.  As a precaution with stopping the Cellcept though, my doctor upped my Prograf again so now it’s at 2.5mg 2x/day.  I’m convinced Prograf is what’s causing the weird symptoms that I’ve been noticing since I got out of the hospital… things like losing more hair than normal and even breaking out more than normal.  (And normal is pretty much never, so it’s been frustrating!)  I think both are slowly getting better, with the exception of my hair being a complete mess – I think the hair I lost when I did the chemoembolization (which was a minimal amount, thank God) is regrowing in now so I have baby hairs that stick straight up in the winter dryness, and the texture overall is just not what it normally is.  It’s very frustrating to me.  

Also frustrating to me is is the fact that I cannot partake in my one and only unsafe addiction, the tanning bed in wintertime. Apparently, the anti-rejection med (Prograf) and the antibiotic I’m on can make any sun, real or fake, really damaging.  I could get burnt and even get skin cancer much easier now.  I’m beginning the spray tan adventures next week (much more expensive than I thought they’d be!) so I may just have to tell you how that goes.  To have a constant tan, you’d have to go every week, which I am NOT doing.  I paid for 3 visits so it better not turn me orange.  🙂

On another note, my incision has been completely healed for a few weeks now, and I’m still grateful for that every single day.  I’m not having much incisional pain at all anymore, and my energy levels are actually a little higher than pre-transplant.  It’s surprising how I can wake up in the morning and be awake and alert, ready to start a new day.  I’m realizing I used to live in an almost constant state of fatigue.  My doctor told me I’d be surprised to see what life was really like after the surgery, and I’m finding that to be true.  I’m hoping everything will continue to improve as I finish healing.  Everyone says you’re not your your full self until at least a year post-transplant, so I’m excited to see where the road leads…

I’m trying to get a post together for Thanksgiving, so until then… be grateful for every breath you take, every moment you live, every person you meet, every place you go.  And please, give back and give life.

Love,

Amanda

Woulda, Shoulda, Coulda, DIDN’T

Image courtesy of LifeBanc.

I’m excited to present these newly released statistics because they finally reflects my September 1, 2010 transplant!

Courtesy of LifeBanc, through September 2010, 

In Ohio, there have been:
2010 Organ Donors = 93
2010 Tissue Donors = 351
2010 Organs Transplanted  313
2010 Tissues Recovered = 3,677

Coversion rate = 78.15%
National Conversion Rate Goal = 75.00%

Organs per Donor: 3.37
LifeBanc’s Organ per Donor Goal: 3.10

NE Ohioans registered as organ, eye, tissue donors: 53.1%
New registrants from Ohio during September: 8,073

Ohians who are registered = 55.1%

Then, through July, 2010 (before my transplant),
Nationally, there were 109,297 waiting list candidates for any transplant, while there were only 8,477 donors.  Because of these donors, 16,778 transplants were able to take place! 

I might not be here today if it weren’t for my teenage donor who decided to give life at the end of a beautiful summer… right before he suddenly passed away.  

Please contact me by my information on the sidebar, through any of my social media sites, or you can also contact LifeBanc if you’d like more information about organ donation and how it’s one simple gift that can save 8 lives and change up to 50.

Pre-op Photos

Pre-op pictures.  (Remember, we got called in at 1:30am and they didn’t take me to surgery until after dinner time!)

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Trish RN gives it a thumbs up!

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Too early! Where is my lip gloss?

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Waiting up all night!

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Part of my liver team including Peter & Karen

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My sweet surgeon, Dr. Fred. (Frederico Aucejo)

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Lisa my social worker and I.  I love her!tumblr_l8m9ueaLM91qc81o3o1_1280

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A hug for Jen to last through surgery!

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Me and my “transport” friend

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Last time with my family before surgery!

The Beginning of the End?

Or perhaps, the end of the beginning?

Today began the beginning of the end, or perhaps the beginning of a new beginning. This week, after an MRCP and ultrasound, we discovered my liver disease (Primary Sclerosing Cholangitis, or PSC) has progressed and a transplant is imminent. I’ve been no stranger to this disease – maintainable with a healthy lifestyle, frequent observation, and medications… treatable only with a transplant. My doctor would always say pediatric cases go downhill unexpectedly and rather quickly. A mysterious tumor has developed on my liver, and it’s in a position where no one can be sure if it’s cancerous or benign.

I will spend most of this week meeting doctors and going through testing, and my doctor expects a deceased-donor transplant in the next 2-3 months. My case has been expedited, and I should have a new liver – and a new life – by the end of summer. In all likelihood, barring organ rejection or complications, I will be able to live a much fuller life after my recovery from this invasive surgery.

As my dad put it, I’ve gone from a marathon to a sprint, and right now I feel a little numb. My parents aren’t dealing very well, and this is going to take a toll on my whole family. My sister surprised me with a charm for my Pandora bracelet, and I know she loves me more than she lets on. I told my cousin, one of my best friends, tonight, and have scheduled meet-ups with my closest friends later this week so I can tell them in person rather than by a text or quick phone call.

My doctor recommended that I put my education on hold until I’ve fully recovered from the surgery, but she expects I will feel better than ever once everything is said and done. I’m excited about that, but so afraid of all of the unknowns. Although I’m no stranger to the hospital, a 2-4 week stay is very intimidating, and I’m not looking forward to having my abdomen sliced completely open vertically and horizontally. I’m really scared of the pain. Also, there are so many “what ifs,” and organ rejection or infection is definitely possible. Thankfully, my doctor said since I’m young, in good shape, and otherwise pretty healthy, I have a better chance of making it through the next few months. As terrible as it seems, an unknown family’s loss will hopefully give me an entire new life, health I’ve never experienced before.

Friends, realize the value of your life and how you can continue to make a difference long after you’re gone. Please go to your BMV or contact me if you’d like to be an organ donor. I can help you make your decision as I’m an advocate for LifeBanc and have been trained as an ambassador. I can assure you that all of the myths are false, and you have the power to change dozens of lives for decades after your death. We never know how many more breaths we’ll breathe, how many more sunrises and sunsets we’ll be here for. Nothing can be taken for granted.

I love each one of you who have taken the time to stop by and check in, and I covet your prayers for my whole family right now. We are especially praying for peace and courage as we finally go through what has been in the waiting for 17 1/2 years now.

Dear Lord,
We come before you tonight and pray for your grace to touch our lives. Lead us through the high waters as you have so many times before. Though I walk through the valley of the shadow of death, please let me fear no evil. I know you are with me, and I know my life is in your strong hands. Please be our strength and our peace as we proceed through this unknown territory. May your will be done in all things, and please give us the courage to continually follow your footsteps in unwavering faith.
Please guide all doctors involved in my case, and let the right liver come to me. Please be with the family who doesn’t know they’re about to lose a loved one in the next few months. I will make sure they know of my gratitude once I’ve received the gift of physical life. Thank you for your gift of eternal life.

Again, please give us the peace that passes understanding as none of this makes sense right now.

We love you, Lord.  Our trust is in you.

Love to you all,
Amanda