Awesome things

Tuesday, I told you how my lab numbers indicated rejection.  This was the second time since my surgery that my numbers threatened the worst.  So many of you told me how you were praying for me. Thank you.

Wednesday, I found out that like the first time, God changed the outcome.

Obviously, clinging to the promises of God works.

My labs split in half in only two days.  My coordinator says there’s no explanation.  (We know why, don’t we?)  We know they’ll be even lower by my next labs on Monday. 

For when you did awesome things that we did not expect, you came down, and the mountains trembled before you.

Isaiah 64.7 

Awesome things indeed.

Rejection Threat #2 (Again)

Dear friends,

I just got yesterday’s labs back and it’s not good.

My AST and ALT, liver enzymes indicative of function or damage, went from 35 and 25, respectively, to 261 and 281.

I don’t think you need to be a health professional to know that’s not good.

My surgeon told me to take a large dose of my antirejection med, Prograf, and to raise the twice-a-day dose for now.  I hate that medication, so I’m not thrilled.  But I’m not thrilled about a threat of rejection, either.

At Christmastime, if you remember, I had another big rejection scare.  It ended up being a virus.  Well this time, they’ve been testing my labs very well for viruses, and it’s not a virus.  There could only be one thing left.

I’m in the middle of my new life.  I’m also in the middle of my college semester – finally back, going strong.  This cannot be happening.  This can have very bad implications, people.

Please join me in praying this miraculously clears up.  I’m getting new labs drawn tomorrow, and we’ll see what happens from there.  If they’re not better, I’m getting another biopsy which will have me down a few days.  The results of that could mean all kinds of things, none of which can be good.

My friend sent me an email with these Scriptures the other day.  One of the verses in Psalm 46, is one of my favorite passages in the whole Bible.

God is our refuge and strength, a very present help in trouble.  Therefore we will not fear, though the earth should change and though the mountains slip into the heart of the sea; though its waters roar and foam, though the mountains quake at it swelling pride.  Selah.  There is a river whose streams make glad the city of God, the holy place where the Most High dwells.  God is within her, she will not fall; God will help her at break of day… The Lord of hosts is with us; the God of Jacob is our Stronghold. Selah.

Psalm 46.1-5,7

Do not fear, for I am with you; do not anxiously look about you, for I am your God.  I will strengthen you, surely I will help you, surely I will uphold  you with My righteous hand.  

Isaiah 41.10

May we find the strength to cling to these promises today.

Amanda

Threats

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. 🙂

Rejection

I should have known.

For probably around a month now, my vastly improved, post-transplant state of existence has been declining.  I have been so tired, so utterly exhausted.  I blamed a medication I take for fibromyalgia and even started taking less of it, but it didn’t seem to help.  I noticed petechiae on my hands on Sunday and was itchy today – both symptoms I had before my transplant – so I was starting to wonder a little deeper.

Sure enough, I got a phone call from my transplant coordinator at the Clinic, Molly, and she said my liver enzymes from Monday’s labs were so high that they’re worried about acute rejection.

Rejection is an issue all transplant recipients face, and it can happen when your immune system isn’t suppressed enough, therefore causing it to “attack” your organ.  The first months after transplant are riskiest as surgeons are still trying to get you at the exact dosage of medications to keep your medication symptoms low, yet your dosage effective.

And that’s where I am now.  They stopped my mycophenolate mofetil (CellCept) right before my liver enzymes, unbeknownst to me, started increasing.  This week, the levels were sky-high, way past the normal range.

So what does this mean for me?

I have to have a biopsy next week – which I am dreading due to really bad past experiences – and based on the results, my surgeons will determine the next course of treatment.  If my liver cells do indeed show rejection, I will be put on IV steroids and possibly a course of increased oral steroids for awhile.  They already have me back on the CellCept as of today, so hopefully that can take care of whatever is going on as well.

Honestly, I’m not sure what all of this means.  Molly assures me, “The good thing about liver rejection is that it’s very treatable.”  Yes, with a biopsy and IV steroids.  Two terrible, awful things.  In case you don’t recall, IV steroids make me laugh, scream, and cry all at the same time.  They’re kind of magical in that respect!  I had biopsies as a child but have terrifying memories of them and have not had one in probably 10-15 years.

Part of me says, “Look what I’ve been though.  Do I seriously need something else? I can’t take anymore!” while another part of me says, “Look what I’ve been through.  What’s one more thing?  By now, I can handle anything.”  The first way of thinking is louder, but the second way of thinking sounds better.

Please stay with me through this journey as you’ve been so good to do in the past.  My biopsy is next Thursday, December 30th, and I will definitely be a nervous wreck until then.  Any prayers or thoughts truly mean life to me.

Love,
Amanda 

When His people pray…

As I told you the other day, my liver numbers were all over the place in last Thursday’s labs.  They were precautioning rejection, going over what might happen, treatment options, etc.  Needless to say, we were scared.  Acute rejection is 100% reversible especially as a healthy liver regenerates, and acute rejection is of no fault of the patient, but still.  It’s not something you want to hear or deal with, especially right out of the gate. 

THANK you for all who lifted me up in prayer last weekend.  We had big faith, and I got a phone call from my coordinator Molly after she got Monday’s labs.  “I’m not sure what to tell you, Amanda, but the numbers have all come down.”  She started listing liver enzymes, telling me what they were, what they are now, and where the normal limits were.  We’re not talking about them going down a few points – a few went down by 50s and 100s, all headed back to normal.  Knowing full well what the answer was, I asked, “So is this normal, for the numbers just to go back to normal all of a sudden after diving so low?  What caused this?”  Now I love Molly, but this seemed to stump her.  “No, not really.  I really don’t know how this happened.  Maybe things just straightened out on their own.  But at this point, we’re not going to worry about anything.”  I knew better – Prayer changed those numbers.

At this point, I really don’t think anything is too big for God because He has continued to take care of me, and this road has not been without bumps and obstacles and sharp turns.  I hope you, too, can see His hand working and believe in His love and grace.  He cares for His children.

Liver clinic tomorrow… then an appointment with infectious disease to go over vaccinations/childcare and learn anything special I’ll need to be careful about when I return to nannying.  Plus we have to clear something else with them, and my future little girl’s parents will be traveling to Africa, so we need to make sure none of the vaccinations or medications will impact me since I’m immunocompromised.  The most exciting part of tomorrow will be getting the rest of my staples out.  They are tugging and pulling nonstop, and that’s even after Peter took half of them out last week.  I think once they’re all out, the incision will start healing better on it’s own.  They’re also removing the drain sutures they put back in, so let’s pray one of them doesn’t start to leak again and end up with me in the ER like last week!  And best of all, with the sutures gone, less pain, I’m hoping I’m up to more visitors (had to cancel a couple this week so far) and – most exciting to me – I’m hoping to be up to seeing my kiddos.  The doctors said I could anytime, but I’d like my staples to be gone and be a little less in constant pain before my plethora of itty bitties – ages newborn through 8 year old – bring their vivacious energy to me.  Keep in mind I’ve been in pain on the sofa or in the hospital for a month.  The most action I’ve had is Grey’s Anatomy on DVD or someone stopping by with dinner or a short visit.  Gotta get my strength up for my kiddos.  🙂

Please help me pray tomorrow goes well and this pain goes away.  It’s mainly from the incision, and now intense back pain has appeared.  The doctors said it’s from the retractors they had to put in me during surgery – they put two in you.  One stretches your abdomen wide open and keeps it that way for 8 hours, and the other pulls up and out on your rib cage to give them even more room.  8 hours of pulling up and out on your rib cage doesn’t sound pleasant, and I’m realizing it doesn’t feel so great either.  One of my friends whom I met on Twitter (we have so much in common  – she’s my age, a nurse, and just had a transplant last November) has mentioned a few times her terrible back pain.  I guess it’s common, but when you think about that retractor, those things are rough.  I’m curious to see how my car wreck back pain merges with the transplant back pain once my stomach is back to normal and I’m trying to lead a normal life.  Let’s start praying about that one because I can’t imagine having worse back pain than I did before surgery!  🙂

I want to spend another minute thanking all of you – the cards are still pouring in.  I started putting them all in a gift bag, but it’s almost so over-packed I could probably only get a couple more in.  (Time for a box! lol) And not just the cards – I’ve gotten so many gift cards, flowers, planters, balloons, stuffed animals – even a sock monkey! – clothes (from my sitting mamas – they know abdominal surgery = swelling = maternity clothes! ha!), meals, Vera Bradley goodies, cash, postcards, even a puzzle (perfect for recuperating at home!) Then the emails, comments, those of you who have put my address on your church’s prayer/card list… it’s just been unbelievable the love and support I’m getting every single day.  I couldn’t ever do enough to thank you for everything each one of you has done for me, but I pray for God to bless you as you’ve blessed me, and sometime down the line when I have the opportunity to be a blessing to you, you better believe I will be there.  As I often say, we’re all in this together.

Love to you all – my friends – new and old, my sweet family, everyone who has merely thought about me during the past 4 months all the way to those who visit and check on me and make sure no need is wanting.  Thank you from the bottom of my heart.
Amanda

Urgent prayer request

As some of you know, Mon and Thurs are my lab days where I get labs drawn locally, they run most of them through, and UPS the less common tests up to the Clinic to get analyzed.

Apparently, my liver numbers were all over the place in yesterday’s labs, so they’re going to wait and see how Monday’s are, but this is a concern.  We learned that 50% of all new livers undergo some kind of acute rejection in the first 6 months, and that’s definitely what this could be.  If my numbers are still elevated, I will have to get an ultrasound (which sounds painful with my incision) and a liver biopsy, and if rejection is confirmed, I’ll have to stay in the hospital for some heavy steroids and/or add more antirejection meds to my schedule.  The good thing is, this kind of rejection is acute and can always be treated, but on the other hand, the treatment isn’t fun, and the whole aspect of it just adds unnecessary drama.  I’m just trying to get better!  🙂

So PLEASE lift us up this weekend and pray whatever’s going on in my body gets straightened out by Monday morning labs.  We’ve seen God move so much during the past couple months and we’re know there’s no situation too big for Him.  Also, please pray that we get through this with strength and grace. The waiting will be the hardest.

Thanks friends,
Amanda