Reflections on 13 Years of Extended Life

Thirteen years of ups and downs, and God is faithful through it all. My life is abundantly blessed!

May 3rd is always significant to me because that's the day my beautiful donor passed away. That's the day I know her family is remembering their special daughter and missing her extra. I had the opportunity to meet my donor's amazing mother several years ago, and it's a blessing to stay in touch with her and share my life, the life that I get to live, because of her family's decision to make Ashley an organ donor even while they were right in the midst of experiencing loss.

If you would like to read about Ashley, or send some love her family's way, here is the website they put together to honor her life:  In Loving Memory of Ashley Bergman

May 5th is significant, because it is the day of my liver transplant in 2001. Technically I went in to surgery about 10pm on May 4th, but it was a twelve hour surgery, and most everything happened and I woke up from it on the 5th. Yep, Cinco de Mayo! But no margaritas here :)

It is always a day of remembering those weeks so sick in the hospital, then one morning the whole transplant team filing into my room to tell my mom and me, "We have a liver for you." That day was a whirlwind of preparations but also a fog covers the memories, no doubt because of the "survival mode" my body was in, and the pain meds I was taking at the time. I remember (or at least I'm told about it) we watched "You've Got Mail" in the evening, and then it was time. About 10 pm I gave my goodbyes and hugs, a little wave, and they wheeled me away to the OR. I think I had the lucky end of the deal, going off to a twelve hour nap (as intense as that surgery is, praise God for anesthesia), while my family and friends and pastor and neighbors waited, took shifts sitting with my mom, prayed, talked, dozed, and waited.

This is a photo of the scrapbook page showing me working on a craft project in my hospital bed a day before transplant, and a photo of my old [nasty!] liver. A couple of family inside jokes: we always say my old liver resembles a barbecue chicken. Yikes! And I only have pictures of my old liver because I asked if I could keep it in a jar after surgery (Lol!), and of course they said no, but to make up for it my transplant coordinator brought a disposable camera into the OR.

I heard stories that my incredible surgeon, who is still dear to us this day, had operated on a baby boy for hours before my surgery, got a break to eat a hamburger and take a shower, then went in to start my operation. They had to "call for backup" from the doctors over at the university hospital (I was at Children's) because my sick liver was so enlarged from scarring, they could hardly get it out. A break or two I'm sure they took in those long twelve hours, and my transplant coordinator nurse would go out and update my family. Finally, the new liver was in, I was all sewn up, and off to the ICU/recovery. I don't know if it was shortly after that, about 10 am May 5th - or if I slept a whole day and it was May 6th, but I have a memory of waking up with the breathing tube still in my throat and being so upset because that was my one main fear going into this surgery: how do you not breathe when you're awake and able to breathe? how do you let the machine take over when you're conscious and want to do it on your own? And they'd assured me, "you won't even know it's there, by the time you're awake it will be out."

Well, of course I don't remember the experience now, so however traumatizing it may have been, it's all no big deal and a funny memory today. But at the time, I was getting so agitated and trying to talk, the nurses gave me a notepad and pen -because talking is what you DON'T do when you have a breathing tube in your throat and lungs- I was determined to get my message across. So what I have now are these funny pieces of notepaper in my scrapbook, with scrawly writing where I had kept beginning the sentence, "Why am I awake?" or sometimes, "you said I wouldn't be awake!" but only half the words were composed before they trailed off the page in a squiggly line, because I kept falling back asleep! It is very amusing to me now :)  I'm glad the nurses saved those pages!

June 2001 - home at last!

Me and my friend Christine - we've known each other just about our whole lives! I look back at these pictures and think, "God bless all my visitors, EVERY time I've been in the hospital, for not walking in, seeing how awful I look, and fainting or making a terrified face or just plain running away! Courageous friends :)

My transplant is such a huge piece of my testimony, of putting my trust and my life in the much more capable than me hands of Christ. When I was recovering from my transplant, about three weeks post-surgery, in my hospital bed in the dark by myself, the fears started to creep in. I had made it out of surgery, but what about next week? Next month? Years down the road? There is so much to learn before and after a transplant, about caring for your suppressed immune system, staying away from germy risky places and sick people, memorizing your boatload of medications and their names and doses... Hand washing, what pets you can and cannot have, wound care, lab blood draw schedules, post-surgery check ups... Information overload and for a detailed, bottom line person like myself, I was letting it all get to me.

I had asked my mom to bring my Bible to me that week, and I had put it in the drawer of my little over-the-bed hospital table. When these fears started creeping around, I had the idea, "get out your Bible."

I think back on this as a remarkable thing. Because, while I had grown up in church, I had not really understood or was even aware that "following Christ" as an active, constant, rhythmic lifestyle was a 'thing' that people did. I went to church because I wanted to, not to check a morals box or to feel good, but I didn't {for several reasons I see now} realize that it [LIFE] was all about Jesus, and that Jesus can and will and wants to be involved in every moment of our lives, not just in a churchy building or event.

So back to my dark hospital room ... I got out my Adventure Bible in it's canvas zippered turquoise case ('90's Sunday school trends, anyone? :) ) and opened it up. I think I said a prayer, asking God to help me, that I was afraid and needed some encouragement. And wouldn't you know it, the page my Bible opened right to was Luke 8, and standing out on that page in bold purple writing was Luke 8:50 - "don't be afraid, just believe." (NIV)

See, my little Adventure Bible had these purple boxes along the columns where they'd take a verse from that chapter, and enlarge the font and make it a page feature. Some of them had a little bit of kid-life-applicable commentary. This verse happened to be out of the story of Jairus, who found out his daughter had just died, and Jesus responded with assurance, "Just have faith, and she will be healed." (NLT) He went back to his home with him, and raised the daughter back to life. It's a great story, but it was just that first verse that was bolded in my little kids Bible, and that little verse jumping up into my face and down into my heart as an immediate response to my little prayer of, "God, if you're here, help me not be scared. Because this feels scary." 

That event sticks out in my mind as the beginning of my "real" Christian life. I went to summer camp a few months later and had an even closer encounter with God, another one of those, "yep Emily, I'm definitely real, and I see you and hear you... what are you going to do about it?" events.

All that to say, my liver transplant has great meaning to my family and friends and most of all to me, as my "second birthday" and my "new lease on life," and the start of the healthiest, most exciting decade I've yet lived. But it also has great meaning as a special piece of my testimony, and a spiritual birthday of sorts, and an incredible opportunity God gave me to face my mortality, and respond to that with Him or without Him. I'm so glad I reached out to Him and jumped into this journey of faith. No regrets, ever ever ever!

Because of my donor and my transplant, I have been able to do so many special things. The first is obvious:

1) survive. Then there's a lot more...

2) graduate high school

3) go to college - and in so doing, 4) meet lifelong friends, 5) fulfill a dream by being on the crew team, and not just as a rower but a coxswain! Incredible lifetime memories there!

6) advocate and speak about organ donation

7) travel with youth choir on two mission trips

8) serve on a youth ministry team, meeting amazing people, learning from great examples so much wisdom about life, still having an impact on me today,

9) met my husband on said ministry team :)

I don't think we were married yet here, but just a few weeks away from the wedding. My amazing man always by my side. Here we are playing cards during my first Remicade treatment for colitis

10) get married!

1/27/07

11) enjoy the ups and downs and wild adventures of our married life, me being sick for far too much of the past seven years, but experiencing so much blessing together, and Ry never leaving my side,

March 2007, our second "monthaversary." What IS it with us and spending special occasions in the hospital?!

12) moving and buying a house, and sticking it out and learning so much about contentment, patience, choosing our battles, as we faced crazy mold issues and unplanned complete remodels of every room in our home -and we're still married and friends after it all! ;)

13) getting planted at the best church in the world where I've gained the wisdom needed to survive these last few chaotic health-challenged, finance-challenged trying years,

14) experience pregnancy, once very briefly, and another time to full term :)

A week before we became the Three Musketeers! August 2011

15) Give birth to an absolute miracle baby girl, Victory,

16) and... I realize there are just too many great things to list. 

But, Not because I've had the endurance to run a marathon yet and add that to my list (running a marathon has been on my bucket list since high school cross country days), or because we currently have the resources to travel to beautiful places that we plan to one day, like Hawaii, Austria, and our own USA's Yellowstone Park (more bucket list).

But there are plenty more simple things to list, because I choose to find joy in every day. In every experience...

One of my greatest heroes, someone whose wisdom I respect and glean all I can from, has taught me this very important clarification to the well-known verse 1 Thessalonians 5:18. It's great advice for life, these three instructions in verses 16 through 18: Rejoice always. Pray continually. And here's the kicker a lot of us don't like: Give thanks in all circumstances. The important clarficiation is, he doesn't write, "Give thanks FOR all circumstances." He writes, "Give thanks IN all circumstances." 

One of the simplest ways I remember this is from a story I saw once about a forest fire. The forest was just decimated. The wildfire had burnt everything green and beautiful away. The wildlife was gone. It was a beautiful sanctuary turned ugly. And then the focus turned to a little green bud, shooting up out of the ground. New life after a tragedy. Fresh, hope-filled spring coming up through the ashes of heaviness. No one would stand there and say, "God, thanks for the wildfire that ruined this landscape and killed the life that was here." That would be crazy! But obedience to 1 Thessalonians 5:18, and learning to live in that flow of noticing the praise-worthy things, and expressiing gratitude for them -- that person would stand up and say, "God, this forest fire made my heart sink. But I see this flower springing up from a silent, lifeless forest floor. And it lifts my spirits, and makes my heart leap. Thank You, God, for this beauty in spite of the ashes."

We all face seasons and experiences in life that are so hard, so sad, so gut-socking and painful. But, our greatest power is our power to choose. Whether your life up to this point has been a nice coast, or it's been a tooth and nail gritty fight to survive, I challenge you to choose gratitude. "Give thanks IN all circumstances." 

Where to Begin? A Summary of Recent Events

I admittedly wait long periods of time between my posts recently, and the farther apart they are, the more overwhelming it is to try and sit down and write out the most current events. I thought that was just due to trying to remember what happened, the farther in the past it goes. Now I think it's also more about how time keeps moving, more things keep happening, the list of items to blog about and update grows longer and - recently - weightier.

My last post was about getting ready for "Plan B," an upgrade to my PTBD biliary drain - to do angioplasty of the bile ducts with a balloon and open up one of the main ones that has serious scar tissue narrowing. I had that procedure done at the beginning of April.

Here I am, ready to go... little did we know it would be about six more hours wait ;)

I came out of it with a French drain tube doubled in size. The doctor exchanged the 8 gauge drain tube I had to a 16 gauge. Wooey, the first look I got under that bandage made me grateful I'm not a wound care nurse, but much more capable, not as easily grossed-out people are in that profession! :)

I was in a groggy state for a day and a half afterward, but it was so good to be home!

That means it has been a whole month with this larger PTBD, and unfortunately, no changes. I tried capping the drain on two different occasions, following doctor instructions. It went well overall; right now it's capped. I was losing way too many electrolytes in the fluid output of the drain, so I had to. I'm still battling those low levels of magnesium and potassium, as well as working really hard (it's not easy, for some reason!) to keep drinking water and other wholesome beverages, and eat good meals. It's a bummer that there were no changes to my lab numbers after this larger drain; even when the drain bag was attached, my bilirubin was still up at 19. Yikes. And the jaundice has stayed the same, and itching has returned WORSE. Ah if I could pick pain or itching, I'd choose pain. Itching is slow torture!

As I mentioned, there haven't been significant or really even noteable changes, improvements, to my lab numbers. This is the reason for my next big piece of news...

I'm glad we got this news the week of Easter. It made everything easier. I cherish the Hope of and in the Resurrection.
Always - Only - Jesus.

I've been referred to the University for another liver transplant.

(:sigh:)


One of my liver doctors sent over the referral, and I'm just awaiting their call one of these days to set up all those crazy pre-transplant evaluation appointments. It's possibly going to be a busy summer... if only it will be full of things like swimming lessons and dance classes with my Victory bear, rather than doctor appointments and uncomfortable procedures?? I will keep hoping and believing.
It's something that's come up in conversation numerous times since about four years ago when my team started noticing that the PSC (primary sclerosing cholangitis) may have recurred. But it was never so definite or concrete as now.

This is a picture of the imaging from my second-to-last procedure, when the first drain was "installed." They got it in and were able to inject dye to illuminate the ducts (the darkened, tree root looking things).
There should be so many more, especially on the left...

That is one mass of sharp, irritating to my skin blue stitches. And one big drain! I flush it with saline like this once or twice a day.

Just for the record, heading into another twelve hour surgery is not what makes me take so many deep breaths, and need time to process these developments, and soak in the Word and worship to be fueled up for those inevitable Mind Monsters. It's not that that scares me. This time I would be heading into a transplant not as a light-hearted teenager, but as a wife and mom to a toddler. I want to be here for them. Always. And a waiting list of approximately, at all times, 17,000 people needing a new liver, versus only the 6,000 per year that receive one... well, do the math. (Source)
Of course this is a fear that I don't dive in too deep to, because my heart and that Holy Spirit voice thankfully always tug me back to earth and say, "but Emily, BUT GOD. This may look daunting, BUT GOD. He can do anything, and He wouldn't have brought you this far to leave you or let you be done living now."

So anyway, that's the biggest news I had. My days are so full of joy and memory making, it's not derailed me too much, just mostly made me live all the more intentionally to soak up the everyday moments. Hobby Lobby had this painted sign I wanted to get for my living room at one time (coincidentally, it's not there anymore). It said, "There is always always ALWAYS something to be thankful for." How true that is!

I had a glorious nap last week, later than usual, and woke up to a gorgeous sunset...

A couple Sundays ago, we took a short drive to the Peninsula and found a secret children's garden. Dreamy looking mature trees, and little fairy gardens someone's made. Miss V was on the hunt for Peter Rabbit :)

The Secret Garden

Momma and Miss V made it to Costco all by ourselves the other day! What a fun time and a big accomplishment :)

I experienced a huge glimmer of hopeful progress the other day. My eyes became more and more white throughout the day, and by evening they were whiter than they'd been since Christmas! Unfortunately back to very golden the next day, but that event sure was encouraging. Looking for more of those in days and weeks to come!

We always enjoy the beautiful garden at the clinic. What beautiful flowers and trees we get to appreciate because someone works very hard at planting and tending.

I've been marveling at God's grace and sustaining me to be able to keep up with Miss V around the house, and I'm on a baking roll this week as well! V and I made grain-free "puffy oven pancakes" on Monday, and I whipped up a batch of sugar cookie dough from a gluten free Hodgson Mills mix. We never got to make Christmas cookies.... or football/Superbowl cookies... Valentine cookies... or shamrock cookies... or Easter cookies. Despite me getting everything including the appropriate cookie cutters out on the counter, every time I've been too tired. Well we are going to make our Easter/spring cookies, no such thing as too late :)
Late last night I couldn't sleep and made coconut flour blueberry scones. (Yep we're still very much gluten free around here. We added back grains last year when I needed to put on weight desperately. Phasing them out again little by little, because all three of us do better without.)
Then today I made a rhubarb crisp, grain free, vegan, refined sugar free, with local rhubarb from a farm down the road. Delish! I have missed baking very much, and can't believe how much I've been able to do including cleaning up afterward, doing multiple loads of dishes and laundry each day, hanging with Miss V and watching a movie a day and doing crafts with her. Every day I have strength and energy to keep up and make life fun in my home, I am SO thrilled and grateful!

Speaking of energy levels and miracles...
Another hurdle I'm in process of jumping is some wonky blood and bleeding issues. My exhaustion level didn't fade enough once I capped my drain last week, and I had a hunch about not just electrolytes but also my blood counts. Sure enough, my doctor reported back to me that my Hemoglobin was at 8 and Hematocrit 26. My Prothrombin time and INR (both indicators of the time it takes for your blood to clot) are double what they should be. I actually had to wait a few hours while I was infused with three units of Plasma before my procedure earlier this month, because my numbers were past their cut off for a safe procedure.
It has to do with the challenges my liver is fighting through, and the state of sickness it is in; PT and INR rise. Not much you can do, I am now taking Vitamin K but really I just need healing! I'm really starting to feel it and noticing that it's not really improving.
Oh more blood drama! It's been almost a full year since my intense war against Autoimmune Thrombocytopenia ended and [I believe] God healed me and put that nasty disease into remission forever! But I'll never forget those trips to the ER hanging on as I was on the verge of passing out and my skin was so white and cold.
I got my blood drawn yesterday evening to check Hemoglobin, Hematocrit, and to do a Type and cross for a blood transfusion. It's inevitable that I'll need one within a week (actually, it's been a week since my labs were drawn last and my doctor informed me of the electrolyte and blood situation and my need for a transfusion.) but the Infusion Center where they do blood is so booked up, I can't get in until Monday. I do NOT want to end up in a critical situation ever again due to low red blood cells, so I figured checking today would be a good idea, we'll see where my numbers are at (knowing I'm still having bleeding issues - dumb gut ulcers!) and if needed, the team will go ahead and put me in the hospital for a short stay to receive a blood transfusion that way. I'd much rather give up a weekend day doing that then have to rush to the ER late Sunday night because the numbers got out of control.
Please say a prayer for clear results and a great plan of action. And as always, a blood match for me that's clean and healthy!

I think that is the summary of the major things going on. It's been a busy month - anyone else feel like April just FLEW by? But I am excited for May; it's my "happy month." :)
I will celebrate thirteen years since my liver transplant on Cinco de Mayo the 5th, my third Mother's Day on the 10th, and my 30th birthday at the end of the month! It's a good life. Never let go of your vision or your fight.

And don't take life or yourself too seriously! ;)

Right?? :)
Interesting to me, my hair is getting back to its curly, wavy state. It was like this before my liver transplant in high school, and changed to being mostly straight when I was pregnant with Miss V. Now, the curls returneth!

Here is a group of statements I wrote out to myself last week when things were feeling overwhelming, lonely and anxious. A declaration:

"I choose to live.
I choose to keep moving.
I choose to take one day at a time.
I choose to not quit.
I choose to trust Jesus.
I choose to believe the enduring, unfailing promises of God.
I choose to look high and low, far and wide, to find any joy I can find in the most difficult of days.
I choose to hope.
I choose to stay in the fight.
I choose to be fully present in the moments for myself, my daughter, and my husband.
I choose to thank God in every moment.
I choose life.
I choose joy."


And here is a beautiful prayer I discovered; I've heard and read parts of it before, but wanted to see it in its entirety. I want to print it out and carry it in my purse with me to remind me of these truths.

St Patrick's Breastplate

Christ be with me, Christ within me
Christ behind me, Christ before me
Christ beside me, Christ to win me
Christ to comfort me and restore me.
Christ beneath me, Christ above me
Christ in quiet, Christ in danger
Christ in hearts of all that love me
Christ in mouth of friend or stranger.

(390-461 A.D.)

Easter Season Anthems...

A brief update about the issues I mentioned in my last post (about confusing communication with my medical team, and running out of bile drain supplies!) is at the bottom of this. It's not the main point of this post so it doesn't get top billing ;)

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I am getting so excited for Easter!

I can just feel the anticipation in my spirit. It really is the Superbowl of church weekends. It's a celebration!
I believe in taking the time to walk through the meaning and emotions of the journey from Jesus' unfounded accusal, unjust trial, and crucifixion. Maybe you have a tradition to do that, like watching The Passion of the Christ film, cooking or hosting a Seder dinner at home, or attending a Good Friday service.
But the wonderful, unforgettable thing about Easter, is that it doesn't end on Good Friday! It doesn't end with the burial of Jesus in a tomb. It doesn't end in tragedy... Resurrection Sunday is coming!
As I've gotten older, and realized that the magic I felt as a girl at Christmastime was mostly from the legend of Santa Claus and the wonder of looking at lights and trees and snow (and don't get me wrong - I still love all of that), Easter has meant more and more to me each year. Also, as I've grown closer to Jesus in a steady pattern of progress over the last decade, Easter means the most. You don't have to try to foster the wonder and joy as an adult by creating traditions, decorating and shopping downtown for gifts and gathering under a tree in new flannel PJs (again - I LOVE all that, but it's just different as an adult, and it's a different feeling than Easter). Jesus' birthday that we celebrate at Christmas is very special, and it was an incredible event in history that fulfilled prophecies from centuries before.
But Easter? That's a whole 'nother level :)

I am so excited to celebrate the joy that Jesus's resurrection brings to my soul, my home, and most of all my church. There's probably no better weekend to jump into the life of a local church than Easter. it is such a collective celebration of the core of our Christian faith. Jesus died and with Him died our sins, our wounds, our sicknesses - and then He rose again! And out of that, we receive freedom, healing, and eternal life with Him! Knowing that in your heart, and honoring and celebrating that with your church family is simply the best.

So, I've been repetitively listening to a couple worship songs lately, because they popped up in my playlist some weeks ago, and I started thinking about Easter because of the lyrics of the songs! They are anthems you can adopt either if you're pumped about Easter already and want to jam and celebrate it, or if you're having a hard time getting excited about Easter this year and need a little push.

Elevation Worship came out with a new album a few months back, "Only King Forever."
The entire album is amazing, but two different songs caught my ear and my heart as they really seem like anthems that fit the Easter season. The words are amazing truths to declare as anthems of victory over your life.
Check out the album on iTunes or Amazon mp3, or their website is a great resource, elevationworship.com.

The first song is,
Raised to Life

Here's a link to the YouTube video of "Raised To Life" (Acoustic Female Version): http://youtu.be/VhIGt0mq2JI

Precious compassion that pours
from the wounds that won our salvation
Sin was strong but the Savior is stronger
Come let us worship Him

Great was the debt that we owe
And how high was the price of our healing
Paid in full by the One who is worthy
Come let us worship Him

Raised to life with Christ the Savior
In His name a new creation
Now our song will rise
Adoring Christ the Lord

Death overcome by the Word
that was spoken before it was finished
Jesus Saves is our song everlasting
Come let us worship Him

Raised to life with Christ the Savior
In His name a new creation
Now our song will rise
Adoring Christ the Lord

Sin was strong but,
Jesus is stronger
Shame was great but,
Jesus You're greater!
Sin was strong but,
Jesus is stronger
Shame was great but,
Jesus You're greater!
(repeat 4x as song builds)
[sidenote: I LOVE this part}


The second song is:
Last Word

This song speaks to me about Easter especially with the line, "You have the last word, 'It is finished!'" as that was what Jesus took care of on the cross. But it also has a lot of meaning and power to declare over a disappointing season in life, over a health crisis or broken relationship, really any life storm or trial. Get these words, and the Scriptures they come from, into your heart and spirit. And watch your own words and demeanor change through the weeks as you walk in a mindset and faith set on victory and a new season to come!

Here is the live recording from Elevation Worship on YouTube:

The storm rises from the deep
And rages around me
But I will remember
When doubt wars within my heart
The battle almost lost
I will remember

You have the last word
It is finished
You have the last word
It is finished
My fear is silenced in Your love
My hope is endless!

Your voice that calmed the violent sea
Speaks courage over me
So I will remember
The words that wake the sun to rise
are breaking through my night
And I will remember

You have the last word
It is finished!
You have the last word
It is finished!
My fear is silenced in Your love
my hope is endless!

Your Word stands through the ages
Your voice shatters the darkness
In You, we are more than conquerors!
You speak, strongholds surrender
Your name overcomes the enemy
In You we are more than conquerors!
(repeat)

You have the last word
It is finished!
You have the last word,
It is finished!
My fear is silenced in Your love
My hope is endless!


I pray that you are encouraged by these songs, and are seeking out anthems of faith that speak to your heart and lift your soul. It's so worth it!

What have you been listening to lately? What songs are your anthems of faith and victory?

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Well, as mentioned at the top of this post, here is a summary of how the hospital communication and bile drain issues are going...

We ended up not getting any answers or help all week, and by Friday I just had no energy left to make a fuss, and my awesome hubby had gotten frustrated enough to call and make a (polite but firm) fuss, Lol! So Friday afternoon, after he spoke with someone in administration for patient concerns, we started getting phone calls.

First I got a call from a nurse in the department that put in my drain. She answered questions about symptoms of infection (so far it looks like I'm in the clear-phew!), and cleaning the drain bag. Unfortunately although I did this diligently over the weekend, it still reeks of something akin to old potatoes and onions and something worse, all combined!
I feel like I need to say, I'm so sorry if you've sat or stood by me recently, or given me a hug lately, and wondered if I've lost my sense of smell or hygiene. I promise I'm showering quite regularly and trying my best! I just desperately need new bags.

The last the thing the nurse did was talk about medical supplies, and set me up with a company to get supplies in the mail.

The company called me right before five o'clock and collected the necessary info from me, and they're going to call tomorrow about insurance coverage, getting a small bag (I requested pediatric size if they exist, because I'm lugging around a 600 cc bag while only putting out about 100 cc all day!). That was so helpful and neat that they called when they could have said, "ah it's too close to the weekend, we'll wait until Monday." I'm hoping for good news about those supplies today. Here's hoping!!

Finally, I got a call from a GI nurse that is now going to be my communication liaison of sorts. My job is to connect with her and explain my concern(s), and she will help me by contacting the right people and setting up the needed steps of care. That will be very helpful, and I appreciate that someone thought to finally assign me specific help. I'm a complicated patient, and it's probably past due that I have more personal communication with the multiple specialty departments at the hospital. Hopefully that will make a difference for me from now on.

I have my next appointment with hepatology on Wednesday. Not exactly sure what the topic of discussion is going to be, other than maybe getting this biliary drain capped. Perhaps planning another ERCP to put in a bile duct stent, because unfortunately my bilirubin levels have gone back up almost as high as ever. (Bummer!)  Or my doc may want to discuss getting an appointment for liver transplant listing evaluation set up at the transplant center across town. Whatever Wednesday entails, I'll no doubt update after that appointment, later this week.

Have a wonderful week, friends. Happy Spring! Great things await- sunshine, gardening season, Easter, SUMMER! Woohoo!  :)

Liver biopsy

On Wednesday I had a transjugular liver biopsy. My liver function tests have continued to stay elevated and so we need to get some information. It was done in Interventional Radiology, with sedation, and they put a plastic catheter down my jugular vein through my neck, and took measurements of the pressures inside my liver and portal vein. I have never had this kind of biopsy before, all the rest have been through the abdomen. It wasn't bad, and I was sedated. But I remember saying, "ouch ouch ouch!" when they removed the plastic catheter and were inserting the metal cannula (which has a hook on the end, the doctor told me- glad I didn't see that!) And vaguely remember them saying they were giving me more medicine. They use the metal hook to take a few biopsy tissue samples of the liver. Before the procedure, the doctor explained that there was a chance because I am post liver transplant with different vein "hook ups" than most people, that they couldn't get the samples without going through my abdomen. But it worked, PTL!!

I was super groggy for a long time after in recovery, and they told me they gave IV Benadryl to help me through the biopsy part- that explained it; that stuff knocks me out!

The doctor told us that the pressure measurements look good, yeah! It will be probably middle of next week before we hear on the biopsies. Just continuing to believe that God is healing me, no cirrhosis, no PSC, in Jesus' name!

I am thankful for great doctors, a beautiful new hospital facility I got the best of the best technology for my procedure, and great staff that always welcomes my little one there with us. Here we are just after I got moved to my bed on the recovery floor. She said, "me, mommy's bed!" So that's what she got :) 

I love my sweet girl of courage!

Seeing and Celebrating

I am a firm believer in the promise that God will replace or restore what has been lost. Time. Strength. Love. Relationships. Purpose. Family. Friends. Joy.
I love the Scripture, "I will restore or replace for you the years that the locust has eaten." (Joel 2:25)
A close second, "what the enemy intended for harm, God has meant for my good." (Genesis 50:20)

At the moment I'm sitting here drinking iced coffee, watching a little HGTV and skimming Martha Stewart Living mag on my lap (the June issue, because I'm that behind, haha), and listening to my girl chatter away to her dollies through the baby monitor. Rare Momma recharge moment, and I love all of it- including and especially the full day we've had leading up to this little respite. Because it's still new to me after months and months of being too weak or sick to do this? Probably! But mostly because, for weeks now, I'm overwhelmed with the fact that that it's such a gift to have work to do, and strength to do it.
You don't realize how sick you were until you finally catch up from nine months of survival mode and realize: "I'm not a terrible cleaner, or home owner, or pack rat- I was just conserving energy that I needed to fight and survive!" :)
Grace for the self: so important.

Victory turns two on Friday. TWO! Where does the time go? Well, I know where most of this year went. Since last October (ten months ago) I've been in some crazy health circumstances. Thankfully, miraculously, wonderfully, the ITP crisis has been quiet - in remission as the doctors would say- hopefully completely Healed, I say- for weeks!
Now (because if it's too quiet, we'd be bored?) I'm facing a different kind of health issue. Urgent, but not critical. My liver enzymes have been elevated for weeks, and there's talk of rejection, biopsy, ruling things out, confirming other things... a bit frustrating in how cryptic and unavailable the Drs have been, and I haven't been able to speak with my actual hepatologist in weeks. August = vacay month it seems :)
I should be hearing the plan by tomorrow though, and it will be good to know what it is.

Despite this new challenge, I am overwhelmed with satisfaction at how well our little family not only survived the past ten months, but we thrived. And we are determined to keep thriving, no matter what we face in the weeks and years ahead.

Victory is turning two on Friday and I don't feel like I've missed one thing. God is so good. And my little girl is such a blessing. Earlier today she climbed up on a kitchen stool, turned on the faucet, and started rinsing dishes. I asked, "do you want to hand me those, you rinse and I'll load the dishwasher?" An emphatic, "Yeah!" was her response, and together we loaded the dishwasher. Pretty soon the sink was empty. This is her norm. Watching us do things around the house, and wanting to join in or take over and help. The joy she brings to our family is immeasurable.
My 23 month old is speaking in short sentences already. She jumps and dances and laughs, and has an incredible sense of humor. She sings. She lifts her hands sometimes during worship when we livestream church.
She is brilliant, watching something once and imitating it immediately, or days later, with attention to detail, and determination.
By the way... This is not a mommy brag post. This is not meant to make you think I have it all together. Oh boy am I still a work in progress. This is a brag post I intend to be pointing up to my amazing God. Every good thing, every gift, I just smile and look up...

I just marvel at how so many blessings can be wrapped up in one tiny person.

However: do not be mistaken. My girl is of course about to turn two, and showing all those parent-character-testing qualities as well.
[In fact I had to remind my girl at least three times while working on this post, that this is indeed naptime... she finally fell asleep... and now a quick twenty minutes later she's up. Win some, lose some :) ]

I look for the teachable moments- for her and for me- and smile at the end of each day. What a gift it is to be a mom. Especially after losing a baby four years ago, and when this little one was just two months old, being told the liver disease that ruined my first liver has returned. And this year of absolute craziness where in June my Hubs - the always believing for healing, never expressing worry, rock of our home- said (after I was out of the CCU and home from the hospital) he thought he was going to lose me.

Recently, many of my friends and acquaintances have been either announcing first pregnancies, or a second or third little one on the way. It can be easy to get sucked into a poor me, no fair mindset. We could not even think about trying to get pregnant again this year, as the implications of a pregnancy combined with ITP could have been devastating for me and a baby. We have to do such a balancing act of faith vs practical. Especially because I'm a big faith, "but God!" person.

I may never be able to get pregnant again. Or possibly, I shouldn't ever get pregnant again. If my liver doesn't shape up, the doctors will start telling me things like it is unwise and dangerous to be pregnant.
Where some couples only need to decide how many children they would like to have and how to space apart the pregnancies, we have to talk about things like, "is my body even capable of carrying another pregnancy? What if the ITP returned? Will colitis flare again like last time? What's my liver going to do? How will these meds affect the baby?" And that horrible question I learned to stop asking some time ago, but I'm sure some of you wonder if we do, "What if a baby survived but not me?"

I'm not trying to be a downer. I am normally pretty positive here [she chooses joy isn't just a title, it's my life!], and truly that is how my thoughts are most of the time. I've done quite a bit of work on my thought life the past four years. Today I just wanted to shine a little light on my very real world, not all rainbows and cotton candy clouds, and show you (though I'm not sure I'm doing a good job sticking to the point Lol!) that even with seemingly unfair or frightening circumstances, you really can thrive! I hope I am sharing how it is possible to walk through life with serious circumstances, and at the same time have complete faith in a God that does the impossible every day.

Victory is a double blessing of a baby in one little girl, and not a day goes by that I don't see that and thank God for that.

Zechariah 9:12 in The Message says, "This very day I'm declaring a double bonus- everything you lost returned twice-over!"

My heart rests because, while I dream of having a bigger family one day and I believe God can and will heal me, and may make that dream happen, my heart is full being a mother to my one wonderful Victory.

What if God has already fulfilled a promise to you, and you just haven't noticed it yet? You looked, but didnt see?

We need to look for and see the good in what we have, before jumping on a train of thought comparing our life to another's, or whining at how unfair we think life is. If I spent all my time only wishing I could be pregnant again, or have more babies, or that we had the resources to adopt instead of paying medical bills, I would be robbing myself and my family of being fully aware and grateful for all I have in the present.
I missed a lot of days and nights with my girl this year, in the hospital, the infusion center, the clinic, my bed. I had to trust that she was going to be just fine, and so was I. I had no choice on my physical location, and the way I saw it, no choice in my thoughts either. I had to fight to trust!

And here we are.
Celebrating TWO, celebrating my platelets recovering, celebrating our faithful God!
Instead of looking at what I miss, I choose to see the restoration, the full replacement and overflowing beyond, of what was lost.
And celebrate, celebrate, celebrate,
rejoice, and thank God!  :)

Home from the Hospital, Hurray!

For those of you not in my world on a daily basis, I thought I'd better update and let you know what I've been up to. My last update stated I'd be starting my Romiplostim shots to treat ITP later that week.
Well, things got worse a little too early in the week to wait. We were on the phone off and on with my hematologist all day Tuesday, discussing the treatment and if I really had any option to wait or go with something other than Romiplostim, because I really didn't want to have to stop breastfeeding just cold turkey and without tapering down Victory's feeding schedule, or without either of us being ready, frankly! Once I'd worked through all of my questions, concerns and frustrations (have I mentioned I have a really patient, kind doctor? because it needs to be mentioned) I decided, ok, I will go ahead with that plan. During the last conversation with my doctor, it was my husband on the phone with him. I asked him to ask my doctor if he could put in a lab order to check my platelets. I was really not feeling well - just exhausted, weak, and like things were just not right in my body. He put in the order, we drove the fifteen minutes to the lab, I got my blood drawn (and received much more concern from the phlebotomist than the day before, apparently I looked a lot worse!), and we left the clinic and started driving the long way home down backroads, because the traffic for the Justin Beiber concert that night was making the freeway look like a mess and a long wait.
Within ten minutes of leaving the clinic, my doctor calls - my platelets are down to 3,000, critical in the medical world. Criticial meaning, you're not just looking out for bruises or even nosebleeds, but your brain could just start hemorrhaging at any point. Not great news. Doctors orders, I had to get to the hospital right away and be admitted through the ER, and start some treatment.

I was amazed thinking about how I almost didn't get my lab drawn. I'd made such a fuss that day that my doctor had said we could wait until Thursday to draw any more labs. Definitely a God thing that I felt funny and spoke up!

So we got home as fast as possible (which felt like it took FOREVER!), threw some things into bags, I grabbed the ripe bananas on the counter to take with us because I figured they'd be black and very scary by the time we got home - not knowing when that would be, and we drove away. Dropping Victory at the grandparents' house (by the way, I am so grateful for amazing parents that I can trust to keep my baby safe and well taken care of, and the fact that they live in the same area. Thanks Mom and Dad, you are a blessing!) we continued on to the hospital. Driving there, I got a headache, and when we were waiting in the ER for my room to become available, it got worse and worse. When they tell you that your brain could hemorrhage any time, a migraine out of the blue makes you a bit nervous. It stuck around actually for the next four days, and finally went away when a resident thought to give me something called Imitrex (not sure on the spelling of that) which is for treating migraines. That was quite a week of pain I never want to repeat!!

I am too tired still to get into all the details of my hospital stays (yep that's plural-part of the long story), but I'll do a quick bullet point list, leaving out a bunch of the medical details I'll try to share later:

• Admitted to the hospital Tuesday night
• Given oxycodone (on an empty stomach - blech) for the headache, Tues late evening - didn't help
• Given tramadol for headache early morning Wednesday - didn't work
• Had to wait for Zofran too long, and threw up from oxycodone and tramadol - headache still there
• Nurses were so helpful and gathered sterile specimen containers and zipper top bags so I could pump milk, and they put it in the refrigerator so we could keep if for Victory. My doctor agreed to put off my shot one day so I could have more time to pump. That was really nice of them and meant a lot to me.
• Two infusions of IVIG Privigen (intravenous immune globulin) Wednesday 3 am and 8 pm
• Visit from my parents and sweet Victory Wednesday afternoon :)
• Visit and dinner and magazines to read from wonderful friends Wednesday evening :)
• Woke up and got sick, felt terrible, got everybody worried and wanting to keep me there more days - then felt much improved in the afternoon
• First Romiplostim shot Thursday 1 pm
• Convinced the doctors I was feeling better (I really was for a time) and got discharged Thursday around 4 pm
• Driving home, that night, next day, next evening - resting and fighting the horrible headache and feeling miserable
• Fever of 101 Thursday night and early Sat morning - went up to 102 point something then, and :sigh: I had to go back to the ER. Threw up at home as we were leaving - good thing I had a collection of pink buckets from the hospital stay 18 hours earlier!
• Arrived at ER, amazing husband told them I'd just been there thru Thursday for low platelets, I am a liver transplant patient (always a big deal when you have a fever and are in the ER - they take it very seriously), and had a high fever and horrible migraine type headache. They took my temp and it was up to 103. 
• I got an IV, they gave me a pain med called "Delottid" (spelling?), it helped headache, it wore off, they gave me more Delottid. In the meantime someone drew some blood for labs, I was taken for a head CT to look for brain bleeds, they put a mask on me because the doctor thought there was a very small chance I could have infectious meningitis, they gave me Tylenol in an untraditional manner to get the fever to go down, and they put in a catheter to get urine to test... and all I remember besides that is waking up every few hours, looking to my right and seeing Hubs leaning over the bed rail trying to sleep - or praying - I haven't asked him what he was doing. I just remember waking up, looking over, seeing that, and crashing again. Like something out of a movie I tell you! I have quite a colorful medical record, but I am not usually the girl creating a hectic scene in the ER. Interesting experience for me!
• Turns out we were there waiting to be admitted, for 11 and a half hours. Have I mentioned that my husband is a saint? He is the most incredible man I know, dealing with all of my nonsense health issues, and all the ramifications of those - financial and otherwise - and the guy never complains. He is a saint, and I am blessed.
• Somewhere around 4 pm I was taken to my room - woke up enough to walk from the ER stretcher to the bed (four steps or so). Went back to sleep, woke up at dusk. Fell back asleep. Turns out that the anti-nausea med they were giving me with the Delottid is very sedating, creating that 24+ hour blur I have. All that sleeping + high fever = a crazy damp bed, let me tell you!
• Saturday around 7:30 pm a neurologist came in to my room and said they wanted to get some spinal fluid to look for meningitis - because of the ongoing headache, high fever, and nausea. Translation: spinal tap! Another one for the medical bucket list! It wasn't that bad.
• I think it was Sunday morning, a resident suggested I get that migraine med, and I tried it and PTL, my headache left, finally!!! I got another dose of that when it tried to sneak back, and it worked and kept it away - and it hasn't been back since!
• Sunday I don't remember a whole lot, except kicking my hubs out to go to church and get some encouragement, which he did. Turned out he got a LOT of encouragement, hugs, prayers, LOVE! We have an amazing church!
• Sunday afternoon friends came to visit after church - more friends came - family and sweet Victory came - then everyone was gone.
• Sometime in there they came back with a report from my spinal tap that there were white blood cells in the fluid, which is called "aseptic meningitis - inflammation of the meninges." Also, we learned that the IVIG I got infusions of the previous stay can cause something called "chemical meningitis." 
• They had started IV antibiotics late Saturday night I think, and continued them late Sunday night/Monday morning.
• Monday all the doctors that had been following me came through and gave their OK that I could go home, as my fever was gone, headache was gone, nothing was coming back on my spinal tap, and I was feeling much better in general.
• The doctors concluded that my symptoms that brought me back to the hospital were either a reaction to the IVIG or Romiplostim, just a severe reaction not usually seen especially when only 5% of people react at all (agh, why do I always have to be the small percentage on the negative side of things? LoL), the chemical meningitis from one of those, or an enterovirus (stomach bug/flu). No real answer, they said, but those are their guesses. The spinal fluid cultures are still cooking, and they told me they will call if something shows up, and I need to come back in the get IV antibiotics. So far so good :)
• We left about 6 pm Monday, and I was feeling so good! Since then I've probably done more than I should (I have a difficult time sitting still, I want to DO things always!) which is probably why I feel weak and tired often. But I am feeling good, my platelets were at 32,000 Monday morning, the only bad thing is that my white blood cell count is now at a point where they get really concerned, and I have to be extra cautious of sick people and going out because an infection would be a bad thing to get right now. They have no idea why my white cell count is so low, so if you like, pray with us that they can figure that one out and find a simple solution.

Five nights and six days, and my husband hardly left my side. I am thankful that his employer and managers are understanding and concerned, and never make him feel pressure to be at work when he simply cannot because of my health issues.
I pray that God provides the resource that we won't have because of this last week of missing work, and provides for the bills that are on their way. Only He knows how we'll get this paid for. I even pray that somehow we'll still be able to take a family trip this year. We had just started planning a road trip to the old west, Yellowstone Park, Mt Rushmore, and many other fun and historical places, and I hope we can still do it. Six years and one vacation is not enough, especially for a family that lives with the kind of pressure we that is there, from my ongoing challenges.

Thank you to my church family, friends, relatives, and blogging pals near and far that have been praying and cooking meals, doing laundry, offering to babysit, and some have even sent cards and given resources to us that are so helpful in this time. It means the world to my little family that we aren't alone in this fight, and so many others are believing for my total healing. Thank you! I can't wait until that happens and we can all celebrate together! Xoxo

Summer Update

So, I've been neglecting the blog lately, because summer in the Pacific Northwest is the most glorious time and place on earth! We have been extra blessed this summer to have sunny weather and temperatures in the 80's more days now than I can count. We had a real heat wave last week and it nearly hit 100! Can I just say, God bless the brilliant individual that invented Air Conditioning? ;)

This will be an update brought to you by a bunch of photos; a little sneak peek into some of our summer activities and accomplishments.

1) To start off, I don't have a photo for this, but by far the biggest accomplishment around our home is that we now have a TODDLER! And she is just eight days away from turning one years old! Time flies far too fast as a mom, but how incredibly wonderful the time has been! :)

2) Bargain treasure hunting...

I have totally scored this summer when it comes to secondhand and clearance rack bargains! I've been frequenting the thrift stores when us gals need to get out of the house for a bit, and we've found some great things. A few of them that I can remember right now:

• A huge bag of Mega Bloks for a buck - I soaked them in warm water and bleach in the sink, ran them through the dishwasher, and they are good as new!
• A bunch of items - some thrifted, some clearance at JoAnn Fabrics and Michael's stores - for Victory's garden birthday party. I am SO excited to decorate with all the goodies I've been stashing away. More photos of those to come, after the party.
• My best find, I think, was a "garden arch" - really a simple arbor - which is something I've been wanting all summer. I found one in a box on the bottom shelf at Goodwill over the weekend - for eight bucks!!! Hubs and I put it together and it is in our yard awaiting the party. I am always reminded of how God cares even for our little wish lists, because it's so evident when I find treasures like that!
• Perhaps my most unique find was this totally awesome retro clock. It was 3.99, and I had a $3 off $10 purchase coupon for making a donation to the store, so since I spent $10 on more "necessary" items, I consider this a freebie! ;)

Another great score was ten organic herb plants from Home Depot, on clearance for 75 cents a pot! One of the lavender plants fit perfectly into this hand painted clay pot - also from the thrift store, for $1!
(From the way I describe it, you'd think I go shopping every day. Actually, I've only been to the store about ten times this whole summer!)

3) Gardening

It is official. I have caught the gardening bug!


Hubs and I have said for four years that we wanted to garden, but we were always so busy throughout the past four years in our home remodeling moldy walls and fixing rotten floors... well this year we finally followed through! Hubs was given free wood at work, as well as our neighbor gave us a bunch of wood. My amazing handy man built six raised beds for me, and I went to town! (I have definitely caught the 'gardening bug!')

This is my cart after discovering the clearance and end-of-season mark down racks at Home Depot...

Some early goodies from my winter squash vines, and a zucchini we let go too long!

We are growing many different things. Lettuce - red leaf and butter; Brussels sprouts; broccoli; zucchini; tomatoes (three types - Roma, Early Girl and Big Beef); three types of peppers - Jalapeno, Green bell, and orange bell... oh I can't even remember everything. All that matters is that everything is thriving and we have or are going to have tons of produce to enjoy and give away!

I found some great pots on clearance at Rite Aid last month, and filled them with flowers. This is my hardy Gerbera daisy from last spring - remember when I bought it? I never covered it with mulch for the winter, and I thought the late ice storm we had surely killed it. But it returned!

Tip from a Home Depot nursery employee: plant marigolds in the corners of your raised beds, and the slugs will go munch on those and leave your veggies alone.

Here is our first red tomato - a "big beef ." And there are about thirty green ones, plus all the tomatoes on the Roma and Early Girl plants. Yikes, I wish I could have nightshades! Fresh salsa from your own tomatoes must taste amazing!
Our neighbors will be benefiting from our surplus :)

Can you see the teeny tiny sprouts in the base of each leaf? The cabbage moths have been loving the leaves but I'm hoping we still get a good crop in the fall. We LOVE our Brussels sprouts around here!

I just love this plant, called "Mossflower." I don't know of any other flower plants that have multiple colored blooms on the same plant! It's amazing! I bought four or five of them, because they were so pretty and I could tell they had potential. Well they did, they have grown twice their size in just a few weeks, and hang over their baskets beautifully!

Pink and green zinnias, cream colored Marigolds...

More Zinnias and Marigolds 

Butter lettuce! We've been snipping off leaves for two months to eat, and it just keeps coming back. Awesome!

I couldn't resist this Dahlia plant when it was on sale for $5 - and now it is HUGE!  Dahlia  flowers are just beautiful

4) Crafty stuff!

I made this for the Fourth of July. It was fun, I sat down with fabric scissors, three quilting fat quarters (red, white, and blue patterns) and a wicker wreath from the dollar store. One movie later, I had a wreath. It felt a bit sparse to me, and I had a lot of leftover fabric strips, so I got another, smaller wreath and tied fabric to that one and connected the two wreaths together with twine. Super easy and cheap to make, and you can do these in any color for any occasion!
Original inspiration from Woman's Day magazine

I've also been using my crafty skills to do a lot of things for Victory's upcoming birthday party...

 6) Birthday party planning!

Hubs and I talked for a few months about our sweet girl's first birthday party. We finally decided on having it at home and making it a "garden party," because this has been our year to finally start investing time and resources into our yard. So why not host a celebration there and really enjoy it! I also like that the money we've spent on potted plants, flowers and garden beds and windchimes and more, is not 'birthday themed,' but they will be party decorations and then just staples in our yard each summer. Double purpose but only a one-time purchase - it's a win-win!

This is a bean bag toss target that a friend and I painted. It is two pieces of foam core board from the dollar store, staple-gun stapled to a wooden frame that used to be part of a shelf in our bathroom.
At the bottom of the photo are bean bags I sewed from leftover nursery fabric. Easy tutorial found here

Pinwheels! I was inspired earlier this summer by a Martha Stewart craft tutorial, and then this garden party blog post, so I have been making them in my free evening time. I've got some little ones, and some huge ones!

8) Home improvements, in particular:

Finishing the bathroom remodel we started in May 2011!

Just a snapshot of the prettiest part of our new bathroom - mosiac glass tile. It cost just $14 total!
Right under that is a wall-mount sink from IKEA. Cost? Just 30 bucks!

Hubs has done an amazing job. It has taken much longer than we'd have liked, but we are so close to being done (just cosmetic stuff left - drywall sanding, painting, staining trim). Can I just say, my husband is amazing! He is working so hard and has so much on his plate, and never complains! Thank you for your great attitude and leadership, Babe!

Hubs has also been very busy building a deck around our house, so our little champ can play outside even when the lawn is sopping wet this winter! It is taking shape and I am so excited to get out there and start decorating it with thrifted, made-over outdoor furniture and accessories!



...Well, that's a little bit of what we've been up to. The highlights! What special things have you done this summer??