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.)

Staring Down the Monster. And, Another Big Needle in the Gut

I have been meaning to sit and write out this post since October, when I titled and saved it as a draft. So much has happened even between then and now, that this post alone could be the chapter(s) of a book.

Early October I had just had my bout with cholangitis, been in the hospital on antibiotics for several days and had a failed ERCP to try and open the strictured (narrowed by way of inflammation turned to scarring) bile duct that contributed to the issue. We'd just been emergency-moved out of our home as there was black mold discovered under the house, and I was processing all of that, along with the newest topic brought up by my liver team the week before: retransplantation.

Retransplantation has gone from being my nemesis, my enemy to be avoided, denied, and not even considered at any costs, to a dark scary monster standing between myself and the life I expected to have when I got married and became a mother, to what it is now... a very possible reality in my future.
Once you're in the position of having to face a fear, and your survival hinges upon facing that fear, you just do it. Not all in one fell swoop easy as pie, but in a graciously gradual process that God takes you through, holding your hand and opening your eyes to what you need to see.

I'm thankful to say, it's not such a monster anymore. The worst part (in my experience) of needing a liver transplant, is how helpless the waiting list can make you feel. You have no control over whether you'll get a liver or not.
Liver transplant is the most intense, physically challenging organ transplant, and livers are not easy to come by. There is no dialysis like kidneys have; there is no life support like a lung or heart machine. It's a perfectly designed filter and toxin-eliminator for the body, crucial in digestion and life itself. There are partial-liver transplants now, where a living donor is able to give part of their liver because it will regenerate, and the piece that is placed in the transplant patient will regenerate as well. However, these kind of liver transplants have a lot more bile duct scarring complications, and when you're already needing a new liver because of your scarred bile ducts due to PSC (primary sclerosing cholangitis) it isn't a great or sometimes even viable option.

*This is the perfect opportunity to make mention of tomorrow's special distinction: February 14th is not just Valentine's Day, but also National Donor Day. If you are not sure you are signed up to be an organ donor, please visit the national registry and get signed up! Follow this link and click on your home state to do so: http://organdonor.gov/becomingdonor/stateregistries.html
Here is a great little informative article just put out in a college newspaper yesterday, detailing some of the most common questions and concerns about organ donation: http://thesnapper.com/2014/02/12/have-a-heart-this-organ-donor-day/
When in doubt, just ask. As an organ donor you can save or enhance up to fifty lives. That's amazing!
There is still a huge need for registered organ donors in the United States, and especially needed are minorities. It's estimated that eighteen people pass away every day waiting for an organ. Consider it and do what you can. Ok, PSA over :)

Back to the not-so-fun scenario of being on the organ transplant waiting list, and having no control whether you'll receive the life saving transplant that you need...
This is where it becomes so important to ground yourself daily -moment by moment- in Truth. There is One who knows my future, and I'm no more in control of the ultimate destiny of my life than a healthy person that the Lord watches over. I continually find myself responding to any mind monsters or doubts that come up, "Maybe so... BUT GOD."
"But, God shall supply ALL of my needs."
"BUT GOD will satisfy me with long life and salvation."
"BUT my GOD will fight for me; I need only to be still."
"BUT GOD knows the way that I take, and when He has tried me, purified me through these challenging times, I will come forth as gold, giving Him the glory."


I didn't update after my ERCP to fix the stricture on January 27th (my guy and I celebrated our seventh wedding anniversary that day in the hospital, by the way! shout out to my amazing hubby!). That was the second attempt since October, and it didn't work. The doctor that did the procedure is world class, has decades of experience, and tried for two or three hours (I can't remember, I was intubated and under general anesthesia for it, and so sick and sleepy for hours and hours after, I missed all the reports, Lol!). But that one stinker of a sharp turn where my transplant was sewn to my bile duct, he just couldn't get the wire through that they needed to put in the stent.

Checking out of the hospital the day after my last ERCP, Jan 27th

Meanwhile, my bilirubin has gone to a level over 20 (normal is 0.2-1.2), my AST/ALT/Alk Phos (liver function tests) are very high, and I've been so jaundiced and itchy, it's been quite the couple weeks!

Orange flavored Cholestyramine, a powder that kind of suspends in water, not dissolving, and you have to just get it down because it's supposed to bind to bile and help get it out, lessening the itching and bilirubin #. It is NOTHING like Orange Juice :)

I was very nauseous for a while, and finally figured out that I wasn't digesting fats very well - that's something you take for granted if your bile ducts are working! I normally eat healthy, nourishing, Primal style meals including butter, Greek yogurt, avocados, full-fat canned coconut milk, etc. I had to curtail that whole way of life and switch to fruit and veggie smoothies twice a day.

This morning I had my favorite: Beet juice, tons of super greens, small handful of blueberries, half a banana, carrot juice, fresh squeezed OJ... Amazing how daylight minimizes the jaundice in this photo. I'll take it!

It's been fun and neat to see how that helped me to recover from the nausea and even keep up with my busy little gal most days all on my own while Hubby works, despite the crazy state of my health. God is always allowing me to live outside the box of sickness that I "should" fit into according to my labs and test results. He's so good!

Tomorrow is the day we are going in for "Plan B" - a PTBD - Percutaneous Transhepatic Biliary Drain. It will be done in Interventional Radiology, where they'll sedate me and use various radiology technologies to find the route, then using a (always too large looking!) hollow needle, go right through my abdomen, through the liver, into my bile duct, insert that handy guide wire that's resisted two other attempts via the ERCP route, and put in a stent to open up this darn strictured bile duct. The plan as it stands is to leave that stent in for up to six months to allow scarring to happen around it, creating a much bigger opening so bile can pass through. Something doctors said after that last ERCP attempt was that, at least visually it appears, most of my bile ducts "have lost function. They are strictured and scarred to the point where little to no bile is passing through."
I put that in quotes because, that's may be a fact, but I choose to keep fact separate from Truth. That report is not what God says. It's what my very smart and caring doctors say, and now that they've gotten this information, I will follow all the steps needed to pursue a transplant eval and be listed, because I am not foolish.
However--- THIS is ALSO where my mind calls forth the TRUTH--- "I walk by faith, and NOT by sight." "Faith is being sure of what we HOPE for, and certain of WHAT WE DO NOT SEE." "Though the vision tarries, wait for it; it will surely come." "NO weapon forged against me shall prevail." "By HIS WOUNDS I AM HEALED!" "AS Jesus is, so AM I in this world!"
You get the idea. :)

Bottom line: I'm not letting this "Monster" take me down. The battle for our lives - whether we're recovering from an addiction, healing from a trauma, trying to bounce back from a failed relationship, or facing some dark diagnoses - the battle begins in our minds. Fill and fix your mind on things above - Philippians 4:8 tells us, "I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse."

If your mind has junk in it, gather it all up like you would rotting food in your fridge, and kick it to the curb! Life is too precious to spend it stuck on garbage thoughts that aren't from God. Life, and life abundant is what Jesus came to bring us - not just in Heaven but here on earth. But it's completely our option - something recently pointed out to me, was that Jesus said, "I have come that they MAY have life..." That leaves the ball in our court.
Speaking from experience, it is so worth the effort and repetition that it takes to build new habits in your thought life, to step out on your sea legs of faith and start looking past a bad report to what the Word says. It may feel completely awkward at first, but it gets easier, and more routine, and pretty soon it is your norm. If you want to do it, you can and you will!



If you've read this far, thank you for bearing with me ;)  This probably should have been two or three separate blog posts! A little secret - we haven't had a working computer in a couple years. We have an old netbook that we have to hook up to our TV to see anything on, and it gets overheated after five to ten minutes of just booting up most of the time-- needless to say I wasn't blogging from there! But about a year ago an incredible family in our world gifted us with a Kindle, which has been an absolute God-send not just for when I'm in the hospital, to stay connected and entertained, but also in parenting a two year old! ;)   And this week I was able to get a keyboard to go with it, which I'm so excited about! I cranked out three quarters of this post in no time! All that to say, you should be seeing more frequent but less lengthy posts from me in the future. SO many times throughout the week I think, "Ah, I should blog this!" usually as I'm learning something I'd love to get down in ink and share with you all. Now I'll be able to do that much more efficiently. Wahoo!



I hope I've informed, encouraged, spoken truth or life into your airspace today.
I'll close with this:

"This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live, and that you may love the Lord your God, listen to His voice, and hold fast to Him.
For the Lord is your life, and He will give you many years in the land."
-Deuteronomy 30:19-20

My two greatest treasures and me at MESH Conference this week. Nothing can keep us away from the House for long! I love my church!

Jaundicey!

If you have seen me in the last two weeks you must have noticed the significant jaundice I have developed. My skin is a glowing gold yellow and the "whites" of my eyes haven't been white in a while! It's no fun when you cant figure out what color top to wear that will somehow downplay the yellow skin, everything seems to magnify it, ha!

The other night my faithful friend Emily took me to Target for a "mom's night out." I've started to not care what people think, and use the store's motorized courtesy carts when I'm tired and need to save my energy. How lame is the alternative anyway, sitting at home not having a blast at Target?!

I have not looked very healthy, however, God's grace abounding, I have really reasonably been able to keep up with my life, my roles as homemaker, wife, and mom to one very energetic little lady! thank You Jesus!

I haven't had any signs of infection, cholangitis or pancreatitis, PTL, but some discomfort and feeling a little out of it, I think from the excess bilirubin rolling around my body. It definitely needs addressing, so I called my liver team and had a bunch of labs drawn today. Tomorrow afternoon I see my hepatologist.

I have a hunch about the cause of this and I am praying it is right, because it's fairly simple and quick fix that should/could clear up this issue for 5-10 years. With PSC it usually takes years for the bile ducts to become so scarred that they narrow to the point of causing back ups which lead to infection, and total blockages. When I went in the hospital in late September with the serious symptoms of cholangitis, they tried to open a narrowing during an ERCP, but due to a sharp turn in my bile duct from the way everything was connected to my transplant liver, the doctor just couldn't get it. At that time they told me they could try going from the outside of my abdomen with slightly more risks, but did not need to because the antibiotics cleared up everything so well.

I am thinking that this is the same narrowing and it is telling us that it needs some help :)

Anticipating a short hospital stay for a pretty simple procedure like that, and believing it will calm down this PSC for years to come, I am hoping that is what the doctors see and want to do! Even the idea of actually planning a hospital stay where I can make arrangements for my family, pack, bring healthy food... what a difference that would be compared to all my other hospital stints these last 18 months :)

please be in agreement that it will be a simple fix and clear this up quickly and easily. God is so faithful, I know He's got this!

Thanks friends :)

Here's a photo of me and my sweet gal. We got to take a little walk in the crisp winter fog today. Great time, great memories. I'm so thankful to be mom to this world changing gal!