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.)

Good News, Not as Good News, and a Plan

I had another appointment with hepatology on Wednesday. I have three liver doctors overseeing my "case" just in that clinic, as well as a gastroenterologist (guts doctor) and three nurses/medical assistants working with me to communicate messages and test results, med changes, appointment requests, and so on. I'm in great hands!
This particularly hepatologist is the newest to my team, but the most experienced. The more we learn, the more impressed I am - he has been a part of or in charge of boards locally and around the world for GI, liver, and more that I can't remember. It amazes me to look back and see the path that curved like a zig zag up a mountain for a while, years back, when trying to get through to my team was near impossible and I felt uncomfortable and stressed - to now, when I have world-renound specialists that study this rare disease PSC and other like it, for most of their career. God is always a few steps ahead, working things out, isn't He? Awesome :)

Leaving my appointment- WITH supplies, woo! -wearing my new "SheIsStrong" tee

It was a great appointment. Dr checked my biliary drain site and said it looks just like it should. I got three spare drain bags and three new "stat locks" - the special sticky-backed plastic locks that tack ever-so-uncomfortably to my belly and hold the drain tube in place just below the stitches, so as it continues down to the Luer lock connecting to drain bag, it won't pull out of my abdomen and gut that it's in, if it gets snagged on something. (Which definitely would have happened by now if i didn't have the stat lock... but the one that had been on there for almost six weeks was so ready to go!)

Much of my time is used up resting, resting, and resting. I have a list now: things I wish I could successfully do lying down. Sew, paint nails, write thank you's, bake, cook, ...  Thank you for the daffodils Ry :)

The not-as-good news of the week was that my bilirubin, although dropping initially after this drain was put in February 14th, has slowly climbed back up to a number that has brought back even the terrible itching that comes with liver disease and severe jaundice. Ah so uncomfortable!!! I'll wake up in the middle of the night scratching my arms intensely and realize- wow my skin is just on fire, sleeping doesn't matter! I can't wait for the bilirubin to drop back down to a good level so that will go away too!

Last weekend I got to sit down for some ME time and made this "CHOOSE JOY" tee :)
I'm loving my growing collection of meaningful shirts!

My bili from last week was 16.8, and my doctor was saying it needs to be down around 10 before they'll look at removing the drain bag and capping the tube to just keep as an access point into my bile ducts. Thus, we discussed, it is time for the next phase of Operation Open Bile Ducts! (not an official title ;)  My doctor shared with my at last appointment that he just had a patient receive a liver transplant last year, after TWENTY years of being on the waiting list, but successfully having a PTBD drain that they would use to access the bile ducts and put in balloon stents and shunts as needed over those two decades. That regular routine keep him going for twenty years; that amazed me! He has more than one patient like that; one was just in before me on Wednesday.
Hearing about that as a very viable option makes me feel really encouraged! My dream and prayer is still to be healed, miraculously, completely, instantly one day! God is in the healing business! But this is another way God can continue to sustain me and restore health to my body, and if it does go on for years, who knows what other technology will be discovered that can help even further! Can't put God or science in a box- or the way we think our prayers will be answered. You never know what God is planning and setting up a few steps ahead :)

Ok sorry about that slight rabbit trail - back on track now. That will be my next step - PRAY the scheduling staff calls me Monday morning and has an opening for Tuesday or Wednesday morning, because I am so uncomfortable and yellower and itchier, and my liver really needs a lower bilirubin level to function well. I am seeing signs of the same communication challenges we ran into last time, and I hope they clear up tomorrow! Nothing like knowing what you next step should be and not being allowed to set it up. {Frustrating!}
Whenever it does end up being scheduled and done, the procedure will be like an ERCP but going through the PTBD drain in my abdomen instead of down my esophagus, and they will use balloons to inflate the scarred, obstructed ("strictured") ducts to an open state, and get those major bile ducts, especially on the right sided liver, draining through again. I wish I could share the pictures from my MRI and fluoroscopy, they are so cool in 3D and animated and everything! I asked- not an option yet.

So if you would, pray for an opening to have this Interventional radiology procedure done SOON, for it to be a "slam dunk" as my dcotor said he expects it to be, and for great function and drainage flow to be restored to those strictured ducts as soon as they get in there with the balloons to inflate the roadblocks of scar tissue and stones!

Here are two photos from today after church. You can't always tell the severity of jaundice on film, but it's been pretty severe! Today at the store I think I scared a few people- my eyes were glowing golden, and next to the undereye concealer I was wearing (regular skin tone concealer - because where do you buy 'jaundice' colored makeup? Lol!) the contrast was just unreal!

I find that if anyone is going to stare at my golden glow, it's not kids--- 

---It's adults! Adults stare at me in public places, and I just want to say, "didn't your mother/teacher/brother/grandfather tell you, 'If you can't say or do anything nice...'?"

I'm thankful for a good week, energy to make memories and laugh with my two sweeties,, and some wonderful doctors with an encouraging, positive plan that we all feel comfortable and hopeful about :)
God is faithful

Wrapping up 2013

Yes, a post from me is past due! Yet, I still have no real computer or keyboard to write at... so that's my excuse for not updating more often. ;) That and the nomadic moving around we had to do in October and November, and the fun busyness of moving HOME and the Christmas season. I have quite a lot to share but it will probably come in pieces over the next month or two. For now, I have the following New Years' reflection to share. God bless you and your reflecting on 2013!

Wrapping up 2013, there is perhaps no better collection of words I can find to express this last year, and my fresh hope for the year ahead. Cheers to all that You have in store in 2014, God! I'm here, I'm ready! 

Psalm 116:1-19 MSG:

I love God because he listened to me, listened as I begged for mercy. He listened so intently as I laid out my case before him. Death stared me in the face, hell was hard on my heels. Up against it, I didn’t know which way to turn; then I called out to God for help: “Please, God!” I cried out. “Save my life!” God is gracious—it is he who makes things right, our most compassionate God.
God takes the side of the helpless; when I was at the end of my rope, he saved me. I said to myself, “Relax and rest. God has showered you with blessings. Soul, you’ve been rescued from death; Eye, you’ve been rescued from tears; And you, Foot, were kept from stumbling.”
I’m striding in the presence of God, alive in the land of the living! I stayed faithful, though bedeviled, and despite a ton of bad luck, Despite giving up on the human race, saying, “They’re all liars and cheats.”
What can I give back to God for the blessings he’s poured out on me? I’ll lift high the cup of salvation—a toast to God! I’ll pray in the name of God; I’ll complete what I promised God I’d do, and I’ll do it together with his people. When they arrive at the gates of death, God welcomes those who love him.
Oh, God, here I am, your servant, your faithful servant: set me free for your service! I’m ready to offer the thanksgiving sacrifice and pray in the name of God. I’ll complete what I promised God I’d do, and I’ll do it in company with his people, In the place of worship, in God’s house, in Jerusalem, God’s city. Hallelujah!

An Episode of Cholangitis, and, We're House-less!

Wow, things have been crazy, but today really took an interesting turn!

I came down with a very high fever last Saturday night, and the worst pain all over my body. I'm not unfamiliar with these symptoms, but it's been nearly a year or longer since they came around. Sunday I was in bed all day with the same fever, a pain around my liver area, and feeling nauseous. When Monday I awoke with the same issues, we called my hepatologist, and they said to get in the ER immediately.
We grabbed a few things, scooped up our angel Victory, and made a beeline for Seattle. God always has us covered in these situations! It was nearly rush hour, and the worst rain storm we've had in quite some time, but we got Vicky safely to her destination and us to Seattle, almost fifty miles in total, completely safe and no problems.
It ended up that I was dealing with an episode of "cholangitis." It was confirmed through the last MRI/MRCP and liver biopsy that the disease I had that ruined my first liver and caused me to need a transplant, Primary Scleorosing Cholangitis, has returned in my new liver. What is that disease all about you ask? Well, the bile ducts get inflamed, as with other autoimmune diseases (stinkin inflammation!), and scarring and infections and things happen, and sometimes you need a liver transplant because of all the damage. Anyway, this was the first time this "recurring PSC" has caused any issues for me. After tests, and specialists and hospitalists putting their heads together, they decided I was dealing with a blockage ("stricture") or at least severe inflammation in one of my bile ducts, causing an infection, hence the very high fever, chills, nausea, vomiting, and - oh I forgot to mention before, I turned a nasty shade of jaundiced yellow almost overnight.
So I began receiving antibiotics through my IV, and actually Tuesday morning already saw improvement in my lab tests. My bilirubin on arrival at the hospital was 6.9, and Tuesday it was down to 5.something, and Wednesday 4.something... Yeah God!!
But the antibiotics alone aren't what they usually rely on. I went in for an ERCP on Wednesday, expecting that they would go in with a scope down my throat, through the small bowel, and enter the biliary tree and open up the blockage with a balloon, or stent if necessary. It all sounded so simple, and the doctor really expected to get it done with no complications. The whole thing was supposed to be about 45 minutes.
Well, when I awoke from anesthesia, he came in and told us that he was unable to even get into my bile ducts. My anatomy is different because of my transplant; my "hook ups" are a bit wonky, and there was a 90 degree angle that he tried for AN HOUR AND A HALF to get the tools around, and just couldn't. The doctor was so kind, and he looked like he was about to cry, and kind of just ran off after he told us the news. I was so disappointed, because I thought for one thing, "well gee if this is just the first of these episodes, and a person with PSC deals with these ongoing for years, what in the heck are we going to do [next time]?!" And I felt so bad for my poor doctor who wanted to help so badly and tried so hard.
It wasn't such a lighthearted moment as I'm making it out to be here. It was overwhelming. Kind of devastating. You may have seen my Instagram pic my hubby posted....

So fast forward to today. I got to leave the hospital yesterday, and must be on oral antibiotics for ten more days. We're praying that the infection and inflammation dissipate completely, this knawing pain I'm having in my right side goes AWAY, and no more episodes of cholangitis occur. No sweat :)
I follow up with my hepatologist next week, and I suppose we'll address some serious topics. Like, what if this happens again and the infection moves quicker, and they can't get in the bile duct to fix it?  They did tell me not to mess around with these kinds of symptoms, because one of these infections can go septic very quickly. meaning your whole body is fighting an infection of the blood (a.k.a. even more, ICU-type serious). There is an option at that point, they said, of going in through the side of my abdomen kind of like an old fashioned liver biopsy, where they can address a stricture and infection that way. Much more invasive and risky, too. Blah. Praying that that is never needed!!!

In the meantime...

We are surrounded by the most incredible people. Have I mentioned that? I think I have, but I can't say it enough. I can't even get into how overwhelmed and nearly numb from complete awe that Hubs and I are feeling today, at God's faithfulness, and the loyalty and get-it-done type of people He's put in our lives.
We've been needing to get to remodeling our living room for quite a while. On the 15th of this month it will be five years since we moved into our house, and since we moved in, we've been battling issue after issue. When we bought it we thought it was, although old, just in need of cosmetic updates, and a lot of love and TLC. But then the issues began.
We first suffered a miscarriage in January 2009, and found mold growing on our bedroom wall and mattress just the same day. (Yeah that was an overwhelming day.) We slept on an air mattress in our living room for two months while my husband tore out that room down to the wall framing, put in insulation and drywall, and made it safe for us to sleep in there. This was in the afternoons every day, and into the late night, as he worked the 3am to 11:30 am shift back then. We got that done, bought a new mattress, and enjoyed our warm, quiet new bedroom sans-oozing-wall paint so much!

Labor Day 2009 thought we'd do a little project in the kitchen - new countertop and cabinets around the sink. No big deal right? Well, he took out the old sink cabinet, and found that the floor was rotten from a previous leak... down to the joists. We then had to dive head first into an unplanned, unexpected, complete gut job of our kitchen, floor joists to ceiling torn out. Everything in the subfloor was rotten and walls were crumbly old plaster and ... short story, that was a two month adventure of microwave cooking and living in even less than our house's 650 square feet offers, because all of our kitchen contents was in our living room as he worked on it. Again during afternoons after working eight hours a day at his full time job.

When I got pregnant with Victory, we knew we needed to redo the second bedroom like we'd done our own, as it didn't have insulation in the walls, and was musty and the plaster walls clearly needed to go. Another project for my awesome hubby and his not-so-free time. When we tore out the wall between the bedroom and the bathroom, there was the creepiest looking, gross, anenome-armed, tendril-waving, nasty-colored mold I ever could've imagined, on the inner side of the bathroom wall. You could see that there had been a water leak from the roof in the past, and they just replaced two square patches of wall, and left the rest. NOT A GOOD IDEA! It was nasty. It freaked me out. So that one bathroom wall had to be replaced at that time, but we couldn't do the bathroom then too, so we had some open holes where it just didn't go in right next to the old plaster and tile, and creatures from the crawl space would come up through the cracks to visit some times. Ick!

Then we finally got to do the bathroom, as the tile was done wrong, outdoor grout was used to do it (a.k.a. water would go right through it!), it was crooked, and it needed some serious help. Also the window was put in right where the water goes when the shower is on... not good! When that remodel was started, the entire outside wall had to be cut out as even the framing under that silly window was rotten. We have a funny picture of one of us (pretending to be) on the toilet waving out to the backyard through the huge five feet by eight feet hole.  :)

So, all that's left now is the living room. With all of my health problems, and because of mold issues we've had in the coat closet in there, we figured there were some problems with moisture, and really looked forward to getting that room's icky old plaster torn out, getting the walls insulated, and finally finishing this little house.

Because of all the health issues lately, a few incredible friends of ours teamed up and went in today to start the job, including bringing in a mold inspector. Well, he found that the problem wasn't so minor as a little musty closet. The report? There is mold growing on all of our floor joists under the house. Black mold. For someone with a compromised liver, this is lethal within a very short time once exposed. We cannot live in our home until the floor joists are replaced under the house. This job will cost $20,000 to $25,000.

Wow.

Wow.

Yeah.

This is where our incredible friends come back into the picture. They started a fund for us the other day, with the plan to raise enough money to make our house safe for us, and to cover the medical bills that have piled up this past year of craziness. The timing of all of this is nothing short of God-ordered. I look back at all we've been through, and know that if it weren't for the crazy things we've already walked through with this house, and my health, we'd be steam-rolled by this. It is insane, to be told in a matter of hours that you cannot go home because it will kill you. We are nomads. Houseless! Don't get me wrong, I'm emotionally EXHAUSTED just experiencing the magnitude of it all. This crew of faithful friends and neighbors were at our house for ten hours today, packing up our belongings into boxes, getting them to safe places, setting it up for this work to be done. Believing that the work will get done, that God will provide, and we'll be able to get back in our home, and finally, live there being healthy and safe and comfortable.

I know that it will work out. God will provide. When things can't get much worse, and He comes through for you, and this same process happens over and over, and over again, you develop this roll-with-the-punches kind of ability that (especially if you're like me - everything in it's place, a place to call home, home is where you ground yourself) you just have to laugh! God always always always has our best in mind, and when you trust Him, you get to experience the most amazing God-events and acts of humanity and miracles and coming-through-in-the-clutch moments... God is amazing, you guys!
I am grateful to be experiencing the calmest peace right now, knowing that as long as I have Him, and I get to be near my treasures, my dearest loved ones, that is all I need, and the rest is just extra blessing! And for that I say, we may be house-less, but we are not home-less. After all, this world is just our temporary home. There is always something more to learn, more character to develop, more JOY to CHOOSE! Okay, God, I'm game. Keep growing me. I trust You. You will never fail.

P.S. I may be rolling with the punches now but... check back with me in a few weeks. Haha! (I'm just human.) I hope we can be home in time for Christmas. :)

Oh! and the link to the fund is: www.gofundme.com/OperationAgnew

Little house, see you in a while!

Post-Bone Marrow Biopsy Check-In, and Humbled Gratitude

Hello! I wanted to check in and let you all know how I am doing post-bone marrow biopsy. As of right now, I'm feeling well! The biopsy was kind of interesting... I got all ready and my IV in upstairs, then they wheeled me down a floor to the area where they do lung scopes, because they have the means to use sedation in that area. Once we were in the procedure room, the nurse got me ready - sticky things onto my chest for the heart and respiration monitor, getting me onto my stomach and keeping the cords untangled, etc. They let Hubs walk me down there, and he ended up staying the whole time. I told them he could wait in the corner (ha) but they let him stay right up by me and hold my hand throughout the procedure. It was pretty mild as procedures go: clean the area, stick some needles in to "numb" it, make a little incision for the bigger needles, stick in the bigger needles, get syringes of fluid, and again needles in, bottle up the samples and send them off to the lab. (This is the run-down that Hubs gave me.) The process was simple. What wasn't so simple was the fact that the doctor was going into my bone - my pelvic bone in my back, to be exact, in between my left hip and spine. Hubs said that at one point the doctor was tapping, tapping, tapping (kind of like hammering) to get into the bone for the samples. ::Shudder much?::

I am told that I was dozing for just the first minute or so. As soon as the needle for lidocaine went in, I cringed and said, "Ouch!" They had to keep going with that, and I repeated my cringing, flinching and "ouch"-ing. Then when the real needles started, I really yelped and was saying, "That hurts!" and crying. That all went on until they finished. :(
I'm glad I don't really remember that, although I have a weird dream-like deja-vu memory of it, and I woke up in recovery crying. (SO strange to me that I have no recollection of getting off the table and into the stretcher to be wheeled back upstairs - but Hubs said I was 'awake' and did it myself. Trippy!)
My poor doctor, he called me twice -later that evening and the next afternoon- to see if I remembered and how I was doing. I think he felt really bad. He is really compassionate; the nurse told me that most of the hematologists don't give their patients anything for this procedure. I have to give that a big, "OMG - are they crazy?! I wonder how they get any samples?!"

Recovery was simple, except it took me a long time to get the drugs out of my system. We got to go home within the hour after the procedure, but I took almost a two hour nap once I was at home, and stayed groggy all night. I was bummed that they gave me more sleepy juice when I was yelping, because it clearly didn't work quickly enough to inhibit the pain or my reactions, but it stayed with me all night. Icky stuff, but a blessing to have, too.

My doctor called that evening to say that a quick look at the bone marrow show it looks "quite healthy" (yahoo!!) and so in that case, he's going ahead with his hunch (after putting all the pieces of my recent and past health history together, which he did quite thoroughly in our pre-biopsy consult), that it is my immune system destroying platelets, something like the condition ITP. So he prescribed me a four day Rx of Dexamethasone, which is like a super-Prednisone steroid drug, to hopefully get my immune system to calm down. It was very interesting learning that this condition affects a lot of young women that he sees in his Hematology practice, and that often it can happen after a viral infection - your immune system is working hard to fight the virus, and it can "misfire" and start destroying platelets along with viral cells. Fascinating, and totally fits with Emily's immune health nonsense, right? (Haha.) Have I mentioned I would like a new immune system for Christmas? :)
On the positive, of course, there are too many things to list, but one huge one is that I'm grateful for an immune system that works overtime, instead of not enough!

So I'm on day three of the Dexamethasone, almost done, and it's not bad. I even get to continue breastfeeding for most of the day, I just pump in the mid-day when the dose is highest in my body and feed Vicky at bedtime and in the morning. She is so in love with nursing, still, it is so sweet, and I'm grateful I didn't have to take something that would have been incompatible with nursing. Weaning her abruptly would be traumatic. Another thing to thank God about! (By the way, I did check with my friend who is a brilliant pharmacist, and also with Vicky's pediatrician. Always good to make sure about these things rather than not informing yourself of any risks.)

One more thing about the biopsy:
My doctor is awesome - I asked him at the end of the consult if we could not do the biopsy if my platelets had gone back up to normal (they would draw a sample to test once I got my IV in), and he said sure, without even looking at me funny. I think he sees people with some faith occasionally :)  The gals from the lab came in to the procedure room right after my doctor, with their special sample-gathering equipment, and delivered the news on my platelets: they were down to 10,000 - that or below that is considered "critical." Yikes! My doctor looked at me and said, "It's good we're doing this then, just in case," and I agreed.

Tomorrow we re-check my platelet count. I am believing it will be back to normal! The exciting thing about this condition is that after this short treatment, it can disappear (or go into remission) FOREVER. Please agree with me in prayer for that outcome!

Speaking of prayer: Wow, I have been so humbled by the prayers of my Christ-following friends and my church family - my strongest teammates in life! They (some of you reading this!) are lifting me up to the Lord in mighty prayers, and I want to say thank you again! I really felt it yesterday in my body! Yesterday I woke up with NO MORE PAIN at the biopsy sight. It didn't hurt all day, until I was running through a parking lot pushing Vicky in her stroller and it just ached like a little bruise for a second (yes, I was running and pushing the stroller, and we were both laughing our heads off! It was the best!)
But back to what I was saying - I'm so thankful for a church that is family; just like God designed it to be. I am grateful for so many believing with us that my healing is on its way. I'm so thankful that God placed Hubs and I in our city four years ago this month, where we knew no one, and drew us into an incredible church where we knew not one person but each other, but knew right away that it was HOME.
I would be a messy mess without my church, without the wisdom, encouragement, and sense of belonging and purpose I receive from being a part of that house. And I am so, so grateful that somehow, although I feel like I don't contribute a thing compared to what I'd love to contribute since my health really took a turn, somehow our little family has been endeared to so many special people, and somehow it seems God makes our hearts and love and commitment to our church shine through even if we're absent more than we'd like, and not able to serve as much as we want to serve.

What a gift to know I am loved and not looked down upon one bit, and that so many of my teammates just want to see me whole and well again - BETTER than before. That reminds me of the heart of Jesus. I love you, my Champions Centre family!

I am a MOM! :)

She's here!!!!!

Victory Liviya arrived Tuesday, August 23rd at 5:44 pm. 6 pounds 3 ounces, 19 inches, and just perfect. God has been SO GOOD to us!

Victory - "the successful outcome of a struggle; overcoming of an obstacle; defeat of an enemy." If you know my story, or the story of Hubs' and my life over the past five years, you absolutely GET her name too :)

Liviya - "brave lioness"

And our last name means "lamb," so she has both the lion and the lamb dwelling together in her name. Kind of a cool symbolism :)

The Name of [JESUS]

I had a thought last week. It occurred to me after one of the evening sessions of Team Church conference (see my last post) and the same day that I heard about another distant relative dying of cancer. The thought grabbed me, and I reflected on it for a time and later had a great discussion about it with my husband. My thought was this:

How many diseases and broken lives would be healed if the Name of JESUS was spoken with faith, honor and expectancy?


I'm still overwhelmed by the idea, and soaking up all that God is teaching me and speaking to me about it. He is growing me in my understanding of who Jesus is and the power in that incredible name.

I also want to share this short blog post by Holly Furtick, [Just say Jesus]. It follows this topic. I recently discovered Holly Furtick's blog, and I'm so glad I did. She is an amazing woman of God, a mom of three and wife of the awesome Pastor Steven Furtick. Anyway, when I read her post I said, "My thoughts exactly!" I love when God is up to something in me and He uses something random like a blog post to confirm what I'm learning :)

I'm going to strive to lift up the name of Jesus today, and see how it changes my world. You can join me if you want to!

Never Once

My church just wrapped an over the top, once in a lifetime conference. Team Church happens every year, but this year was one to go down in the record books. We celebrated our pastors reaching 25 years of ministry in our city, and it is so apparent through everything God did and spoke this week that the best is yet to come! I am so grateful to belong to an alive, thriving, purposeful, city-changing, life-changing, life-giving, JESUS-CENTERED church. My pastors are my heroes, and my life wouldn't be the same without my Champions Centre family. Because of my health issues and being 9 months pregnant, I didn't get to attend conference. But I did attend via livestreaming each evening when it was running, and just the bits I received were so encouraging and life-giving. If you've never heard Pastors Steven Furtick, Jentezen Franklin, Kevin Gerald, or Dave Martin speak, you must seek out some podcasts!

We sang a new (Matt Redman) song during worship that represents the story of our church over the past twenty five years, and as I read the lyrics today, I am blown away at how it also describes the story of my life, my testimony, and the story of our BG about to arrive. Give it a listen (watch the video below) and read the lyrics. Never ONCE. God is so good.

Never Once - Matt Redman

Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us

Kneeling on this battleground
Seeing just how much You've done
Knowing every victory
Was Your pow'r in us

Scars and struggles on the way
But with joy our hearts will say
Yes our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God You are faithful

Kneeling on this battleground
Seeing just how much You've done
Knowing every victory
Was Your pow'r in us

Scars and struggles on the way
But with joy our hearts can say
Yes our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God You are faithful
You are faithful, God You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by your constant grace
Held within Your perfect peace
Never once, no we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful God You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God You are faithful...

Face of a Miracle

Our thirty-four week growth ultrasound went so great yesterday! BG is right on track, ahead even, with arms and legs measuring 35 weeks (she's definitely got my long limbs!) and a rather large head measuring at 36 weeks :) (Two smart parent brains make an even bigger baby brain, we figure!)
She is over five pounds now, and all looks good. Continuing to defy those "transplant recipient baby" stats... yeah God!!

My doctor surprised us by doing at least five different 3D face shots during our ultrasound yesterday. Here is the best shot we got, the face of our precious miracle:

I can't wait to hold my baby girl!

My Liver Transplant in Photos

These are photos of my old and new liver, as well as photos of several scrapbook pages. They are not the best quality, but you get the idea.

Before






After










And now

I'M A SURVIVOR!

I just read this quote, and it is getting me PUMPED for my ten year transplant anniversary on Thursday! LANDMARK MILESTONE for me!!

"Liver transplant surgery is akin to being hit by a semi with trailer attached."

That's RIGHT I survived it! And by the grace of God, I've experienced NO complications, NO rejection, NO lasting damage - only a large scar across my upper abdomen remains to represent the story. I am an OVERCOMER, and a CHAMPION, and I am celebrating my victory this week! Thank You God for my life!

Our Baby Victory

Hubs and I decided on the name for our future baby girl over a year ago. It didn't matter so much that we don't know if we'll ever have a baby girl. It mattered that, if we are given a daughter, her name will be Victory. This name means so much to both of us, and represents the journey we've walked out and all the things God has done to make this miracle happen. I am a liver transplant recipient, with active ulcerative colitis, food allergies, suspected Celiac disease, inflammatory arthritis, as well as near-constant anemia (translation: six separate issues that can cause infertility and pregnancy complications). And I am four months pregnant with a healthy baby.

The fact that I am pregnant and expecting a healthy baby is a miracle, and a great personal victory. It is a testimony of God moving on our behalf. There is no way that I can describe it to anyone to fully convey how important this word and this name is to us. Maybe just a few close friends understand. God has done so much for us in the past year and even in these first few months of 2011, and we are so grateful!

You must understand that I am very into names, I always have been. So if my whole process seems over the top to you, that's fine. Choosing a name is a BIG deal, in my opinion. A name gives a person an identity, an idea of the feelings that their parents held surrounding their existence, and even a vision for their life. Here are a few verses I've sought out to represent how we feel about our little Victory on the way. If we are right and this baby is a little daughter, we will share these scriptures with her as she grows up, teaching her the meaning of her name and always reminding her that she is a miracle that God purposed to live!

For the Lord your God is going with you! He will fight for you against your enemies [UC, anemia, Celiac, allergies, etc?!] and He will give you {Victory}! Deuteronomy 20:4

How the king rejoices in your strength, O Lord! He shouts with joy because you give him {Victory}. Psalm 21:1

They did not conquer the land with their swords; it was not their own strong arm that gave them {Victory}. It was your right hand and strong arm and the blinding light from your face that helped them, for you loved them. Psalm 44:3

I wait quietly before God, for my {Victory} comes from him. Psalm 62:1

The Lord is my strength and my song; he has given me {Victory}. Psalm 118:14

I thank you for answering my prayer and giving me {Victory}! Psalm 118:21

Expecting...

...a baby.

:)

This has been Hubs' and my big secret for two months, and it's time to spill the beans! We wanted to wait until we were out of the first trimester, as the risk of losing the pregnancy drops considerably. We didn't even tell our family until a few days ago, because we didn't want to announce it early and then have to share less happy news down the road (been there, done that - makes that sad time even worse!).
My pregnancy is "high risk," and we walked through the first trimester without any expectations. But we've had three ultrasounds so far, and all that is visible is a healthy, developing baby with no abnormalities and a very strong heartbeat! God continues to amaze us as he lets me defy the odds and statistics that attempt to put me and my health history in a box. We will praise Him, no matter what the outcome. But I am so thankful for encouraging reports at each appointment thus far! The best is yet to come!