Endoscopy Results & Scripture

The endoscopy went really well.  It was 2 weeks ago today, and even with my choking episodes, my doctor found nothing.  Absolutely nothing.  There is obvious evidence of where the varices were before my transplant cured my portal hypertension (see the previous post) but no more varices, no issues, nothing. I do have a hiatal hernia that was diagnosed a few years ago, so I’m blaming that.  We have no other idea what could be causing my episodes other than anxiety.  (My doctor’s opinion, not really my own.  I’m not having panic attacks before I have my choking attacks. Random.)

In fact, look how good my esophagus looks:

I got over the anesthesia very quickly and was back to normal life within a day or two.  Now I’m just dealing with anxiety, headaches, and the pulled muscle in my abdomen.  It’s not healing well, but I will see my surgeon tomorrow and see what he wants to do about it.  Dilaudid and muscle relaxers are not the answer, even though my primary care doctor does mean well. 🙂

Please pray for strength and grace as I have five appointments at the Clinic tomorrow, including my oncologist and surgeon.  We’re also getting an ultrasound to make sure my stent is holding well.

I’m very thankful because God has sent a wonderful mentor into my life who has experienced cancer, a near-death illness, and a terrible broken relationship.  We have so much in common, it’s unbelievable, and she’s been such an encouragement to me just in the past week we’ve been talking with each other.  And small world, I went to school with her daughter for 10 years and she also taught my middle school science class.  God is so good in the way He provides.  Yesterday she shared Isaiah 62 which states:

You will be a crown of splendor in the Lord’s hand, a royal diadem in the hand of your God.  No longer will they call you Deserted, or name your land Desolate… for the Lord will take delight in you… As a young man marries a young woman, so will your Builder marry you; as a bridegroom rejoices over his bride, so will your God rejoice over you.

God never, ever wastes our suffering.

Thank you for your prayers for tomorrow,
Amanda 

Fear of flying / Refinement

Today, I’m sitting in my hospital bed thinking and wondering, dreaming and hoping.  I’ve come up with an idea, a proposition… Bear with me as I get there.

I suppose it’s like the fear of flying.

See, airports aren’t scary, but for some people they facilitate fear just because of their proximity to take offs, landings, and turbulence.

I’m not scared of nighttime, but it facilitates fear because I know bedtime is soon approaching.  It means that soon the people will go away and the quiet will set in.  It means I’ll soon be alone to fend for myself.  Plus, it’s all too clear to me that I don’t sleep well at night, and I have memories of some very traumatic nighttime attacks.

In the same manner, I can say I am not afraid of hospitals, IVs, tests, or doctors.  Even surgery, really.   They just facilitate my deepest fear that I know I’m in over my head with illnesses science can’t even control. Illnesses that prevent me from achieving my dreams, make each day a struggle, and put limits on my life in all sorts of ways. Illnesses that play with my mind, making me worry about where my insurance will come from once I leave my parents’ and what kind of guy would ever want to marry this kind of a disaster. Illnesses that produce hours of phone calls and sorting through bills, dealing with insurance, and filling out forms. Illnesses that easily fill a pillbox full of medications that have taken over my body. Illnesses that self-adjust differently each and every day, illnesses that threaten my ability to make plans.  And ultimately, illnesses that could one day kill me, taking me from the people and the life I so greatly love.  That’s the only thing I truly fear.

But for now, I think maybe my illnesses are like the 6th grade. You have to go – you may not want to but have no choice.  Reluctantly, you bring home new knowledge every day.  You can’t help it.  Fortunately, it makes you a better person as you learn about the world and gain social skills. 

Likewise, I don’t have a choice whether or not to be sick, but I can be grateful knowing at least it’s making me a better person. This lifetime has given me so much love, increased my patience, and given me an empathy most people can never obtain. It’s given me opportunities and experiences that are important to my life and career studying to be a nurse. And most precious to me, it has given me a choice to put my life in the Refiner’s fire as somehow He refines and uses this damaged life for His glory. 

And finally I say, if all of this has been for even one person to know Him, if all of this has been to keep one person afloat, then each and every painful part of it has been worth it.  All 19 years of it.

I can’t get the thought of “Refiner’s fire” out of my mind.  Malachi says,

For He will be like a refiner’s fire. He will sit as a refiner and purifier of silver; he will purify and refine them. 

John Piper states,

He is a refiner’s fire, and that makes all the difference. A refiner’s fire does not destroy indiscriminately like a forest fire. A refiner’s fire does not consume completely like the fire of an incinerator. A refiner’s fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner’s fire.  But it does say, he is like a REFINER’S fire. And therefore this is not merely a word of warning, but a tremendous word of hope. The furnace of affliction in the family of God is always for refinement, never for destruction.

May the crazy miracle of just getting through my days be to the glory of Him who holds my future.  Praise God for the hope of refinement, of our ability to choose to be bettered through the pain and turmoil of this life.

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.  😉

A life like this

Hi everyone,

I am in surgery right now while you read this.  It’s a scheduled post, just a little something on my mind for you.

A life like this… I think these are just a few intrinsic desires we all have within us.
The avoidance of pain.
No disappointment of a life gone wrong.
And maybe, just maybe, enough hope to get through.

Coming up on my second major surgery in a year, I have conflicting thoughts. I have strong opinions that go both ways. And, I have enough memories to scare me out of this. Look at the 17” scar on your abdomen spanning three directions. Close your eyes. Imagine a scalpel piercing through your flesh, slicing down your very own abdomen again. More inches. One layer – skin. Next comes tissue. Then there’s muscle. More tissue. Sooner or later that knife will peel back the very last layer of your body revealing beating, pink organs. They are keeping you alive, and this surgeon over your body literally holds your next breath, your next heartbeat in his hands.

1. But thankfully, we have the promise of Psalm 31.15a. Really, truly, our life in someone else’s hands. Praise God.

My times are in Your hands; deliver me from my enemies.

Psalm 139.14

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Ecclesiastes 31.11 

He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end.

2. To avoid pain, Matthew 11:28-30 

Come to me, all you that are weary and are carrying heavy burdens, 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.

3. Disappointment of a life gone wrong, Jeremiah 29:11 

For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.

4. Hope to get through, Psalm 62.5

Find rest, O my soul, in God alone; my hope comes from Him.

Psalm 42.5

Why are you downcast, O my soul? Why so disturbed within me? Put your Hope in God, for I will yet praise him, my Savior and my God.

I hope this encourages you.  Say a little prayer for me right now. 🙂

Love,
Amanda 

Update & Pieces

Happy Weekend to all of you!  I’m leaving for Chicago for a long weekend and wanted to give you an update beforehand.

I’m thankful to report that life has been pretty stable for me since the pneumonia/low WBC incident.  It hasn’t been better, but stable is more than I can ask for right now.  Very tired and weak but trying to adapt as much as possible.  Hoping in my heart of hearts that the surgery August 5 will be exactly what my body has needed all this time.  Praying stable will be a new level for me after I recover.

I always tell people how God gave me such a peace last summer while waiting for my liver.  Yes, I had questions and I definitely had “my moments,” but overall, I was calm, just waiting for the inevitable.  Praying my gift would come before another tumor moved in.  Trusting God Himself held my future and safety in His hands.

This time around – I was, at first, very scared and mostly angry that once again, it’s me who has to go through something, how less than a year after the most difficult surgery possible, wondering what I did to deserve this, it was again my time for major surgery.  More staples and scars.  More fear and helplessness.  More ICU and lines and clinging to a pillow and not being able to get into my own bed.  What was going on?  Was this really right?  But again, peace has moved in to my heart.

Do I like what’s ahead on my path?  No.  Am I excited for what’s happening in a few weeks?  No.  Would I have chosen this for my life?  No.  But it has to fit in somewhere and one day be to the glory of God.

The God of the Universe has a plan that’s greater than anything I’d ever be able to dream up for myself.

Isaiah 55.8-9

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.  ”As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts as your thoughts.”

And that, I believe is where God’s Word in Proverbs 3.5-6 comes in:

Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge Him, and He shall direct thy paths.

Until we get to Heaven, there will be suffering.  There will be questions without answers.  But He promised… 

Hebrews 13.5b

…for He hath said, “I will never leave thee, nor forsake thee.”

Thanks for staying tuned to this crazy ride I’m on.

Love to you all,
Amanda

Home!

Well friends, I finally made it onto oral antibiotics (praise God!) and my WBC level increased so I was discharged on Saturday. I was excited to get out, and I was thankful I didn’t have to have a port inserted for IV antibiotics.  Also, I was so glad I didn’t have to sit around in the hospital until my counts raised.  Surprisingly two Neupogen injections rose my WBC from 1 to 4(!!)

I have been very weak this week and am very swollen for some reason, but I don’t have any pneumonia symptoms anymore.  I don’t think I ever really did, though – other than the fever and chills the day I got admitted into the hospital.  I’m grateful my symptoms weren’t worse than they were, and I’m also glad the pneumonia didn’t become life-threatening.  With my immunosuppressant medications, the illness could have easily gone out of control.

I was on so many medications last week that a lot of the details are sketchy, but I do remember some great doctors, nurses, and friends.  I remember all of my hospital visitors and Danielle spending 2 nights with me, sleeping in the uncomfortable chair.  The cards, flowers… they, like they were a year ago, helped keep me encouraged.  Thanks, everyone.

So once my oral antibiotics are finished (Saturday) I’ll be past the pneumonia, thank God.

Now, the next obstacle is the splenectomy.  Next week I’m meeting with one of my liver surgeons who is the best choice to take out my spleen.  I’m also meeting with my oncologist and my infectious disease doctors, too.  All three are involved in my case right now.  I’m hoping to have the surgery scheduled at my visit Monday, so we’ll see.  It’s a big surgery, and I cannot get it done laparoscopically since my spleen is so large holding all of my blood cells.  That means a long hospital stay, long recovery, more pain, and more destruction to my poor abdomen! I’m not excited about it, but if this is the answer to improving my low white blood cells (and low platelets) then I think it will be worth it.

I have had dangerously low platelets since I was diagnosed with liver disease as a kid, and after my transplant, my white blood cells completely took a dive to “critical level.”  Platelets enable your blood to clot, while white blood cells protect your body against infection.  Deficiencies in both are big deals, and with the platelets, we just hoped they’d improve with the transplant.  They did a little bit – more so in the beginning – but now they’re dropping.  Either way, the biggest issue is the white blood cells.  I caught pneumonia because of them, and now my doctors are wanting to get my spleen out now as it “sucks up” and hides all of the blood cells my body is needing.  The worry is I could catch something far more destructive than “just” pneumonia.  So without my spleen, nothing will be completely filled up with my blood cells, or so is our hopes.  And if this doesn’t work?  We’re pretty much out of options.

When I am afraid, I will trust in you.
Psalm 56.3

8 Months – News & Prayer Requests

Hi everyone,

Yesterday marks my 8-month transplant anniversary. In important news, this year’s Lifebanc Gift of Life Walk & Run is going to be Sunday, August 13 at 7:30am I don’t have my leaders’ guide yet, but I will be leading a team. I hope to have double the participants as last year so write it on your calendar, invite a friend, and stay tuned for an information statement here – probably in a month or so. Here is last year’s campaign page – Gift of Life Walk & Run! as well as photos/video about last year’s event – if you’d like an idea of what this is all about. This year I will have 365 more things to be grateful about, and a donor to honor, so it’s my dream and goal to get double participation.

So news about me. If you’re here, you probably are interested. 🙂 I have a few people checking in via email and social networks, and this is your update. To be candidly honest, I am not feeling that well right now and am extremely overextended with school and obligations, so please let this be your update. My inbox is so behind right now, you don’t even want to know! I love you all, I just am not physically up to all I want to do at the moment.

There is so much going on right now, I don’t even know where to start!

Since March and throughout April, I have had 4 trips to the ER, have seen 2 new specialists, 2 MRIs, 1 CT scan, and numerous other tests.

I desperately want to tell you how well I’ve been feeling and how amazing this new life is, but I can’t do that this time.

See, a lot of you – myself included – may have thought post-transplant life would have to be amazing – easy, even.  Low key.  Healthy.  Fewer meds.  More energy.  Healthy.

One day, I’ll get there.  But not today.

Sure, I have to think of where I was before my surgery.  I had so many other diagnoses along with liver disease, and a tumor to go with it, so thinking one surgery would cure my life was foolish.  Yes, I have a healthy liver now.  That’s amazing.  But I still have back pain, fatigue, and fibromyalgia, with the addition of medication side effects, a low immune system, chronic neutropenia (low white blood cell count, in my case – 1.5 – critical), and newly, degenerative disc disorder and arthritis in my back.  I have to go to the hospital with practically every new problem that arises, even if I’m just sick with a virus or dehydrated.  I get a new specialist over ever issue, because my transplant team acts like my body is a gold box housing a diamond, a donated liver, a rare treasure to guard like it’s the most important thing in the world.  I agree, this gift is priceless, but I think sometimes they go to the extreme.

Either way, this is my life now, and 8 months later, you’d think I’d be able to cope with it.  Sometimes I wish I had my surgery when I was a lot younger so I wouldn’t know what kind of life to compare it to.  Maybe this would be normal to me.  Or maybe my idea of normal life is skewed from being a victim of childhood chronic illness.  What if this is the best it ever was, or ever will get?

I’m trying to be okay with that.

The other week, I had many doctors appointments to figure out some more issues going on with my crazy body, and since then, we are still trying to get on the path to answers.

First, throw in a virus that had me to my PCP twice, ER twice, and required 2 types of antibiotics.  Not fun.

Then, the “big thing” right now – we are consulting with a hematologist/oncologist about my chronic neutropenia and thrombocytopenia (low white blood cell levels – “critical,” even, and low platelet levels).  Last week, I had several labs done for oncology and a CT scan for them.  The doctors have also ordered a bone marrow biopsy, as well, which is my absolute last choice for anything.  More on that another time.

Last week, a home care nurse stopped by to teach me how to administer pentamidine treatments to myself at home.  Because my white cell count is so low, I’m at risk for PCP pneumonia, one of the most dangerous kinds of pneumonia, so I have to get these monthly treatments now.  They taste really bad, hurt my throat, and make my voice hoarse, but at this present time, I don’t have a choice. It’s also scary why I have to get them.

All of that said, my good news is that I’m going to Disney World tomorrow – hopefully – followed by 2 weeks in Ireland with my nursing school.  I’m hoping I’ll be up for both trips.  If I can just have improved health during this month – nothing more – that’s really all I want.  I’ve been especially dreaming of Ireland for a couple years now, so please pray for my one wish to come true.  I filled out my application, turned in reference letters, interviewed, got accepted, paid, bought rainboots, started packing… I’m so close to being there!  🙂 It’s such bad news that my WBCs are still so low. I’m waiting to hear from my infections disease/travel medicine specialist to confirm whether or not I can still go on these trips – I don’t think anyone was expecting my labs to get, and stay, this low. Not only do I sleep all day and am so weak, but I don’t have much of an immune system at all right now.

Despite it all, I’m forcing myself to still get out there and enjoy life so it doesn’t pass me by. I’m making desperate attempts to keep up with all the people I love, the friends I hold so close to my heart. And it always is such a wonderful thing to see how we, at our lowest, can care the most for others who are hurting. It’s an amazing part of this human suffering, and the times during which I am low, it’s so evident – and such a blessing – to me.

But the enjoyment of everything, the gratitude, are the only things keeping me sane right now. I was thrilled to be able to attend my precious cousin’s wedding a month ago as well as my little buddy’s karate testing – yellow belt!  I go out with my friends a lot and have still been able to go to church and Bible study – priorities! School hasn’t been going very well, but I can’t say I didn’t try. Fun in the works is my baby sister’s graduation party and my birthday in a few months.  I think because I’m a summer baby I have an extra passion for summer, and I’m making mental lists of all the things I want to do this year!  Last summer doesn’t count for too much but waiting on my liver.  Even though a year ago this month was the time my world was forever changed, I’m trying to focus on the good things that are all around, even if it’s just snuggling with my little Haylie, the anticipation of Ireland, or the feeling of seeing that perfect pair of shoes on the shelf. I love moments like those.  🙂  So everyone please spend the next week savoring the big and little moments, being passionately grateful, in and for your life.

So friends, this is your big update on all things in my health life. Thank you, thank you, thank you for all of your support.  Please pray I may have peace with everything no matter what happens as well as the purest form of gratitude for my new life highs and lows.

Love, love, love
Amanda

One night when I was really upset about all the confusion and pain going on around me, my mom wrote this Scripture down for me:

Be merciful unto me, O God, be merciful unto me: for my soul trusteth (taketh refuge) in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

Psalm 57.1