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

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!  :)

Little Bit Forward, Little Bit Back (or, Stinky Bag of Bile on my Hip)

It has been just over a month since I had the procedure to put in my PTBD (biliary drain), and I have not known how to write an update post. There is so much to communicate, or so little.

Some days I feel like writing out a post the length of a book chapter. Other days, I just want to write a sentence and post a photo, and leave it at that.

Things haven't gone quite how I expected. In several ways. 

I am always seeking a healthy rapport and clear communication with my doctors, and usually we all achieve that. But in the days before this procedure and also in the recovery time, that did not go as usual. Working with some new doctors who do not know me and my medical history quite so well, and don't realize that I know my way around my chart, my health and the way things work...

About to go into the procedure room.
I think this was right before the nurse gave me a dose of IV Benadryl.
Yikes that stuff is trippy! :

 Based off the first explanation of the PTBD back in January, I had different expectations of how the procedure would go. I was sitting there in the pre-procedure room, after it took the nurse twenty minutes and two painful attempts at putting in an IV (I'm normally a perfect IV and lab poke patient, but she picked an odd area of my arm and I was so dehydrated from the NPO/fasting before the procedure, it turned into a not fun time.) Once she got a line in, she brought in consent forms to sign, and in reading them I started to think I was in prep for the wrong procedure. It did not sound like what my hepatologist had explained to us. I had to wait almost a half hour, on top of the half hour we'd already been waiting, for the doctor to come in and answer my questions. He reassured me enough by his answers to my questions that he and I were on the same page.

Turns out, we learn afterward, not quite. I won't get into the details. At least it was a successful procedure and I now have a drain that can be used in ERCP to access bile ducts for things like putting in a stent, etc. Also, it's been allowing some bile to escape through the exterior line to a drainage bag connected at the drain tube end, which I have attached at all times, flush twice a day and empty about as often.

Sunday morning, first morning at home after my procedure Friday. I felt great that morning!

Upon discharge from the hospital the next day, it quickly became apparent that we weren't given much information that we actually needed to care for this new appendage I had, and hardly had the supplies to do the physical care, or the knowledge to know what to look for as a concern. I gave it some thought for a few days, as I wasn't in the mood to urgently drive up to the hospital to see the same doctor and receive more vague instructions, or be sent to the ER by my much more concerned doctors, plus I was in a LOT of pain. (The pain, I figured out on my own in week two, came mostly from the drain going into my abdomen right above my diaphragm - with every breath in, it would push on the tender area and hurt so much! Also, I discovered, if I ate more than a small amount of food and did not space out my meals into tiny ones that took all day to eat, my guts full of food, which run right under the exit wound, would push on it and cause quite a lot of pain. Ouch!

The drain was put in the middle of my abdomen because it could not go on my right side like they normally put them. I got to see this on fluoroscopy film later, it was pretty cool to watch the moving images in 3D of the right biliary tree spinning around on the screen. It was not cool to see how bad things look - my right sided bile ducts are nearly defunct. Perhaps a more blunt doctor would say they are defunct. They are shrunken, twisted, knobby, narrow tubes that look like knarly strings of yarn that a cat or child got to and twisted or tied knots in repeaedly. Or, they also made me think of a compacted, spiral strand of DNA gone very wrong. Basically no bile gets through them. 

What amazes me is, that they could get so bad without much indication. It must have happened over several years, and the only sign I've had that something was funny is the dull ache I sometimes had and have in my upper right side.

The main point is, it's been nearly five weeks since the procedure, and we're just now figuring out that the site may be infected. My recovery took much longer than the doctor expected. I have been the most proactive I could be, I just kind of fell through the cracks on this one. The good thing is that Ry and I spoke with the hospital administrator in charge of patient care, and we were able to give great feedback.

I'm not a whiner, I'm not a complainer, and I hate raising any negative point without having a solution to offer as well. But in this case it just happened that multiple things were dropped, all for the same patient (me), and it can at least be a learning experience for all of us.

The good progress that was made is that for several days after the drain was put in, what seemed to be stones (bile stones? I don't know what they're called when you don't have a gallbladder) were coming out into the bile bag several times a day. They were not large, but it was good to see that they were coming out, especially since I didn't know they existed! Also, my bilirubin (albeit slowly) started dropping almost right away. My eyes looked less green/yellow, and my skin as well. Some days would look worse and some much better.

Me and Ry doing an eye/skin color comparison.
On the left: Jaundice / Right: No jaundice!

Unfortunately, though the docs said it can take six to eight weeks for jaundice to clear after a gradual build up over time like I had, and things were slowwwwwly but surely improving... things have now plateaued, and my Bili number actually went UP last draw, and my skin and eyes are not looking too good. A little girl at the park came right up to my face as I sat on a bench the other day, and said, "are your eyes green? Why are they green? Is your skin green??" in disbelief. I told her it is because I'm extra special, and she said, "Oh! ok." And ran off to play.
 A few minutes later though she came back to stare at me. Lol! I asked why didn't she go play, and she said, "Because I want to sit by you, you're extra special. And really pretty!" So, what she lacked in personal space awareness, which really comes later in life anyway, she made up for in sweet compliments :)

It's just funny, I don't notice when the jaundice gets severe, or I tend to think I look better than I do, then we go out somewhere and people give me strange looks, and then I remember and feel bummed that, darn, I must not look too good after all, or be making progress after all.

I have a couple appointments coming up with liver doctors in the folllowing weeks, as well as more labs to keep tabs on my counts. I had to get a blood transfusion about two weeks out from the procedure, as my hemoglobin isn't staying up where it should. My hematologist thinks I am bleeding somewhere; we don't know where. Probably in my guts, though, because I had to switch back to Tacrolimus for my liver transplant immune suppression, and that tends to make my colitis flare, which would cause bleeding in the guts somewhere. The Cyclosporine which I was most rcently taking needs bile to be digested probably and keep the liver transplant safe... couldn't keep taking that when my liver and bile aren't working right. If I keep requiring transfusions, we will probably have to start discussing colectomy and an ostomy bag again as we were last spring, before the ITP went away. Hmm... carrying around not just one stinky bag of yellow green bile, but two bags, the other filling up with gut waste. Oh boy! I don't even know if I'm strong enough to go through that colon surgery right now, but we'll probably discuss it soon.

[So, what was the toughest decision YOU had to make today? Lol! I hope it was something fun like which pair of new shoes to buy, not which stinky waste bag you want to carry around with you for the next decade... or for life! ;) ]

I don't envy my doctors, that's for sure. What a balancing act they are doing, with all the body systems that are acting up, needing to stabilize and help those, while wanting to keep the still-healthy, quiet things that way. Pray for their wisdom and for perfect solutions to be thought of. I have some amazing doctors (the best team I've ever had in all these years of medical care).

I had a liver ultrasound on Thursday, to check on veins and do the biannual check for liver lesions or suspicious bile duct changes...
(Yeah I'm 29, and they were looking for pre-cancer or cancer. That's one part of my life.)
This is an every six month thing, probably more often if my liver doesn't shape up soon, and I get placed on the transplant list.
They alternate between ultrasound and MRI checks, because I opt for NO radiotion, NO CT scans.

If this is all pretty technical medical jargon and you don't understand it but would like a summary version, just leave a comment. Feel free to ask questions too. Like I said near the top, I don't even know where to start with everything that's been happening. I just started typing and here's where I ended up this time.

The main thing is, things aren't going as well as it seemed they would be, as presented to us before the procedure. But no one can control that. I got through it, and at least doctors now have an access point to my bile ducts, whereas before they did not, and were not going to put me through a third ERCP attempt to try that again.

I am taking care of this bile drain the very best I can, I am taking my meds and drinking my veggie-fruit smoothies (I crave them now when I miss a day!) to help my liver the most I can. And I am hoping for the best, declaring God's promising, and leaning on His truth! He's never failed, and He won't start now!!!

Thank you so much to the friends-that-are-family who brought us dinners for the first two weeks of this challenging time. You were our angels!

Thank you for those who continue to pray with us believing for the miracles we need, those of you who speak affirming words of health and agreeing words of healing over me, those of you who sent cards, letters, or very meaningful gifts like the custom made bracelet that says, "she chooses joy." Talk about motivating to keep up this fight! And some days boy do I need that motivation from those of you so dear to me.

Onward, forward, moving along... life goes on! I'm still here still breathing still very full of purpose and spunk - God's not done with me yet! ;)

Finally made it back to church last week, and this week I was even stronger!
These two lovies in the photo with me are my posse.
They make it all possible - their flexibility and kindness and selflessness and faith.
Yep, that all applies to Ry AND our two year old. She is amazing.
Love you two so much!

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!

Liver Biopsy results

I just got off the phone with my doctor.
"Well, good news and bad news."
My biopsy results showed No rejection that they could see, and no new issues such as autoimmune hepatitis. Good news!
She said there is always a chance it is a chronic rejection that is not detected in biopsy, but not highly likely.
As far as a reason for the elevated liver enzymes, there is no clear answer. I will repeat blood tests in a couple weeks and hopefully numbers will look good!
In the meantime, no medication changes or additions, and thankfully I'm almost tapered off Prednisone and don't have to go back on!

There was some more information from the biopsy, though.
The Bad news, "You do have PSC [primary sclerosing cholangitis]."
That is the disease that completely ruined the liver I was born with, and caused me to need a transplant at age 16. My doctors have been talking about the PSC being "back" since a biopsy I had four years ago. But it was never confirmed, and I always take the comments with a grain of salt. Not because I'm in denial, but because I know my God is bigger. There is the lens of science, and the lens of faith - the latter is much more real to me than the former!

Only in the past two years, and really last couple months has PSC come up in discussion more, when I did my MRCP test and this last biopsy.
The MRCP showed no blockages in my bile ducts, great news. PSC is an autoimmune-caused inflammation of the bile ducts, and what happens over time is the liver becomes scarred, from bile not being able to get through and backing up in the liver. (For photos of what a healthy liver looks like vs a liver that's been ruined from PSC, see my post http://shechoosesjoy.blogspot.com/2011/05/my-liver-transplant-in-photos.html?m=0)

So the biopsy showed PSC. This isn't anything urgent, but something to learn about, so I can do all I can in the physical to take care of my body, and get all the info I can to pray more specifically!
I was so young and sick when I had PSC before transplant, I don't remember the day to day Ins and outs of living with the disease.
Example, I've been having pain in my upper right side and some yellowing in my eyes from time to time. I forced myself to be brave and ask my doctor about it (it really is worse not asking, and making up 'what if' scenarios in your head!). I learned that with PSC you can have transient obstruction of bile ducts, which clears up on its own, versus bad strictures which need a sedated procedure to put in a stint to open up. The discomfort of what I'm experiencing is really high some days (like today!) From inflammation in my liver. But I'm grateful it's not the alternative kind of stricture or something requiring me to go to the hospital!

All that to say, first, thank God I'm not having acute rejection and I have no hepatitis! Second, I have some learning to do about PSC as an adult. Third, to my Champions Centre family, you'll probably see me up front often when we have prayer during service, because I'm not going to stop believing God can heal me, or asking Him to do so!

Thanks for your continued support and encouragement. Over the years I have gotten pretty good at "encouraging myself in the Lord," as the Word says we need to learn to do. I wouldn't have survived up to this point without  learning that skill! It's funny, when someone exhibits a strong faith and a positive attitude, and stays busy encouraging others, as people we may start to think, "well they're good, they don't need anything from me." Incorrect!
Never underestimate the power of letting someone know you're praying, or sharing just a few encouraging words, "you're doing good!" "Keep it up!" "God's got this!"
A few months back I got a Tweet from a friend, right after I got home from the hospital, in response to a post I made about Psalm 27:13 ("I will remain confident in this; I will see the goodness of the Lord in the land of the living.") I was putting it out there, declaring it in faith about my life. And my friend responded, "You WILL see the goodness of the Lord." Wow, how those words gave my faith a lift and even today after I got this news, I heard those words in my head.

My best advice for thriving through a challenging season (or in my case, lifetime, haha!):
Be vigilant about what you're letting get in your mind and heart (consider your relationships, social media connections, music and TV influences...). Feed your faith, starve your fears (example: concerned about your health? stay the heck off WebMD! Lol!). Surrround yourself with life-giving people who bring out the best in you and believe and speak good over your life. And Trust God!

"I will not die but LIVE, and will proclaim what the Lord has done."
Psalm 118:17

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!

What's Happening

Ok, so I am about a month overdue for a major update on everything that's been going on with me. Our one "real" computer in the house, a little netbook, hasn't had a working screen in almost two years, so when I need to sit down and really blog, I have to make the time to turn it on, plug in the special cord that Hubs rigged up to connect the netbook to the TV, and get a chair over to the spot, hunker down and start typing. And then more recently our little netbook does this really charming thing of shutting off, completely randomly, either while paying a bill, writing a blog post, or worst of all - livestreaming church! Oh well, we make do. I am going to type as much as I can while old Trusty (or Not-so-Trusty) is running, and see how far I get :)

So. I have been out of the hospital for about six weeks, I think, and it has been AMAZING! The weather in Seattle has been out of this world beautiful, and I've been able to catch up on things at home that have been neglected for the past ten months as I was just struggling to stay alive and functioning in the very basic human mode. The other day I finally (as in, a year later) organized the big cabinet we put on the bathroom wall, cleaned it out of everything that had piled up over the year - wax ring for installing a toilet, anyone? - and got all of our bath towels put in the there.

Wow, that felt good to finally accomplish! When everything unnecessary and unused is OUT of a space, and it just has what we use and need, I feel so much better. So yay me, for slowly but surely working on things and getting to enjoy being a wife, mom, and domestic diva a bit again :)

Another accomplishment was finally putting tile backsplashes up in our kitchen, oh, three years after the remodel too place? Again, what a feeling of accomplishment, and security that no water from the sink or grease from the stove will be splashing onto the drywall (which is, yes, still unpainted) and causing issues down the road). I'm so thankful for the great deal on tile that we got, it was just what we wanted and works great in the room. We repurposed shelving from another area in the house, and I've got my open shelving wall and tile. It's looking pretty cute!

One bummer we found out is that there is mold under the wall surfaces in our coat closet, and so alas, ANOTHER remodel looms. It will be the last one, it is the closet in our living room, which is our one remaining room with old plaster walls and no insulation. But finding the time and resources to do that, in an already busy and balancing act of life, is a challenge. Good thing Hubs is always up for a challenge - by fall, we will get it done I think, and be much healthier and cozier this coming winter! 
In the meantime, I have boxes of my crafts supplies, fabric stash, glassware, birthday party supplies - you name it, sitting in my living room, waiting for a finished closet to be put into. Character building, I say ;)

So, moving on from house to health - here's what's been happening:

Going with the most recent events, I am on Prednisone right now in case of liver rejection.
My LFTs (liver function tests - ALT, AST, Alkaline Phos, Bilirubin) have been elevated pretty consistently for a couple months, actually since switching from Tacrolimus to Cyclosporine as my anti rejection med. My doctor is very calm about it, which I really appreciate and need, and isn't panicking, but started me on Prednisone a couple weeks ago and we are going to recheck my labs tomorrow (Wednesday). If numbers aren't improved, I have to go in for a liver biopsy. They will want to check for rejection, as well as any issues like infections and what not. It occurs to me that after so many blood transfusions this year, they will look for hepatitis as well. It will all work out!
Interestingly enough, the reason they can do a liver biopsy without the risks of bleeding is that...

ITP seems to be in total remission!!! GOD IS GOOD!!! My platelets have been steadily climbing since I left the hospital in mid June, and that has been an absolute encouragement. It is so fantastic to get a call from my hematologist or go online to check my results, and find that the platelet number is higher and higher every time. What a gift after such a crazy year of scary-low critical platelets! Most recenty, last Monday, my platelets were at 149,000. The range they call "normal" is 150,000-400,000, so WOW, I was just one point away :)

In light of the elevated LFTs, I went in for an MRI/MRCP earlier this month. They were checking to make sure I did not have any strictures in my bile ducts, as when you have PSC (Primary Sclerosing Cholangitis) liver disease, those can become a problem, and cause back ups and pain, cholangitis infections, and elevated numbers. I refuse to accept that PSC is back in my new liver, despite what the reports may have shown over the past couple years. I believe God healed me with my transplant, and I am sticking with that. And awesome as He is, God gave us a great report on the MRI! No strictures, and actually improved liver tissue in an area that radiology report eighteen months ago said was looking not so good.
Awesome, right?! :)

Finally, the other health event I had was my annual colonoscopy. Woo, party time! (Haha!) 

colonoscopy prep solution

With all of the colitis problems this year, the major bleeding coming from my colon and just being exacerbated by the ITP low platelets, my gastroenterologist and I came up with a plan to start talking about colon removal. The first step in the plan was to even accept the idea. Talking about a simple tiny biopsy and colonoscopy, let alone complete removel of my colon, is very serious when my platelets were as low as they were (8-10,000, consistently). It is much more than an issue of surgery, as there's talk of hemorrhage risk, and also they said I must do the surgery at a liver transplant center, because there is a risk of liver failure when doing abdominal surgery when liver scarring or cirrhosis is evident (so 'they' say). As you can imagine, becoming comfortable even talking about a decision that major was a big deal. That alone took me a few weeks.
Then I started doing research, asking questions, and had an interview with my doc and asked all sorts of things about colectomy, ostomy bags, and so on. If I am not completely healed of colitis, a surgery and ostomy looks like it is in my future. That was another big mental thing to get a grasp of, and took a bit of time.

Snuggles with my girl while waiting for my doctor

My smarty girl, checking me out after she saw my doctor do the same thing :)

The most recent step was to have my colonoscopy, so they have a current picture of what my guts look like to give to the surgeon if we continue going down that surgery road. This wasn't even an option for most of the year, because of such low platelets. But my platelets started improving and we scheduled the procedure, and the day before I went in to get my numbers checked. They were planning to give me a platelet infusion during the procedure, to prevent any bleeding issues, and only take a couple biopsies. Well, my platelets came back so good, I didn't need any infusion and they got to take more biopsies, which is always good for monitoring sake. Woohoo!

Kind of grossing me out, I had a number of polyps in my gut. I've never had that before, even having colitis for nearly 20 years. But they were all biopsied, along with a bunch of other spots of gut tissue - and everything came back clear, no malignancies, no dysplasia! Yeah Jesus! :)
Also, the report, similar to my Liver MRI, came back showing that my guts look better than the last scan, in two areas. There is definitely colitis activity and my transverse (across the top of my abdomen) colon looked worse, but the ascending and descending colon areas are improved. So, hurray for that!

Thankfully, things have been pretty quiet with colitis and ITP these past six weeks. I am so grateful for that! Not having to worry about bleeding and transfusions and going back to Critical Care or riding in an ambulance... phew! Thank You Jesus!
What a gift it has been to be at home, at church, and around our city with my sweet family and incredible friends, just enjoying the summer weather and all that is good in my life. WHAT a gift.

We may live in the 'hood, but our summer sunset views are million dollar :)

Pray with me in agreement for a great report on my LFTs and platelets tomorrow! Once my numbers are stabilized, I get to taper off the Prednisone, which is always a good thing. Last night my knees and belly were super swollen from the side effects. Pred is a great drug in the short term, but so many icky side effects when you have to be on it for a while. Speaking of which, is why I am up before dawn today. (Insomnia is another lovely side effect.) Thankfully in the summer, being up this early, it gets light out early, and I have always loved watching the sun come up. One reason I really loved being on crew in college :)

Today is a new day, full of new gifts, opportunities, and potential! Seize the day - look UP and around at all you have been given - life is good! Xo!

"So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that’s where the action is. See things from his perspective."
-Colossians 3, MSG

Keeping Hope Alive

At the moment I am sitting at the hospital getting another blood transfusion. Just started my second unit. On Monday my Hematocrit was 22 and my Hemoglobin just 7, so my doctor ordered blood. Two units will only get me up to about 28, so still anemic, but it's something!

Easter weekend was such a turnaround for me, and I thought that was truly it, the beginning of a new normal. But on top of a cold or flu I caught, including aches, bad chest cough and a fever, Ive started having a GI bleed again.

No no no no no!!!

I am fighting to keep my hope alive today. Take things one day at a time. My platelets were up to 20k earlier this week, so I shouldn't lose a massive amount of blood like I did in previous instances. It is hard though, to see this happening, and know where it has led every other time... the ER or hospital.

I am responding very well to the transfusions today, and the bleeding could stop at any moment. That is my prayer. Also I hope and pray that this autoimmune ITP will burn out now, as my doctor is hoping and thinking it will soon. Then while we are figuring out what the best step is for my colon, some bleeding can happen and it won't turn into a critical issue!

Hope... as for me, I will always have hope. Thank You God for your good plans for me (Jer 29:11) and that you love me more than I can fathom (John 3:16).

Better days ahead... I can do this!

Easter Hope and Healing!

Jesus is alive :)

Happy Resurrection Sunday to you, or as you may know it, Easter!

We are experiencing some amazing weather in the Seattle area this weekend: gorgeous sunny days with temps above sixty! This is a delight to us lifelong residents. Easter here usually feels more like October than spring.
My little fam attended our church's community kid centered event in the morning, there was an Alice in Wonderland theme and felt like a full on street fair, it was wonderful! Then we had lunch, dressed in our Easter best, and headed back to church to serve. What an awesome night, two great services celebrating what our Jesus has done for us.

I just had to update and share that not only did I make it through all of Saturdays events, I made it out Friday to the mall with some friends, Thursday night running errands a long time, and I am still going, just need rest for a while.

God is so good. Monday night we went out as a family, and had a great time. But when we got home, I had another return of the migraine. It took until Tuesday night, but I got finally a RX from my doctor for a med, and it helped! So after six days and nights of almost constant migraine... relief!

Each day since has been improving in overall energy and function. I finished the antibiotic doctors put me on in the hospital. Gut infection all cleared up! No signs of bleeding. No signs of low platelets! Less arthritis. Sleeping through nights. Energy to go out and do things! Strength to pick up my Victory! What a change from two weeks ago in the hospital. Thank You Jesus.

I also had check ups with my new GI doctor, my primary care doctor, and my new liver doctor. They all went well. My fave part of it all is when my liver doctor said, "You are nowhere near needing a new liver." Woo!!!!! That was GREAT NEWS.

So, I just wanted to write all this down, even just for my own encouragement later, and declare my hope for this pattern of improving health to continue.

Thank You God for healing, for hope, for answered prayers, for EASTER!

I hope you will take time today to recognize Christ's death and resurrection. Without it we would be dead and lost in our sin and pain. Because of it, we can have hope and life with God forever.

Happy Resurrection Sunday! Jesus' love for you is greater than any shortcoming you possess - embrace that today.

Ups... and Downs...

Hey y'all. How are you? Do you too feel like February has just flown by? I have not updated in nearly a month and felt the need.

I had a few amazing weeks after my last, mega, blood transfusion. And just last week had blood work taken and got a great report back on my platelets: 54,000! This is still below normal range, which is 150,000-400,000, but much better than the critical numbers I was battling since October. Glory to Jesus and His healing touch!
What didn't come back so great were my liver enzymes, which were quite elevated. My doctor had me get those rechecked yesterday, and thankfully our prayers are being answered, they have decreased. But they have been a bit elevated for a couple months, and I have a liver check up next week, and I know there will be talk of MRIs and biopsies. (sigh...)

All labs will be repeated in two weeks, pending no changes in my symptoms. so then we'll see where things are sitting.

Which brings me to my other news, unfortunately I didn't to enjoy having energy and doing real life stuff again for long. For about a week now I have had an UC flare and been losing some blood and starting to feel fatigue, and then caught a nasty cold which is now in my chest and causing pain and coughing and all sorts of tiredness.
It has been a tough few days, I have been feeling frustrated that I just can't catch a break and be well for longer than that ten day or so stretch I got to enjoy.

Life is hard right now. We are hanging on to the hope of God's provision and sovereign plan, and without that... things look pretty grim.

We have been planning a little road trip getaway for a while, to get out of town, away from the stress, stacks of bills, insurance paperwork, and our still unfinished house. We are scheduled to leave on Thursday morning. If you feel moved to, please pray that we will get to go, that my body will recover a hundredfold overnight, and neither my illnesses nor anything else will stop us from this much needed time of refreshment and fun. A short respite from this cycle of survival mode is so needed.

Thanks for checking in and reading. Life is hard, but God is good!

2 Corinthians 4:16-17
 "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."

I am so thankful for this promise!

Another Transfusion

Hey there, friends. Today I had another blood transfusion. Hematocrit was down to 25 on Monday, and since then I have had some seriously unnerving symptoms from a colitis flare. Won't get into details on that, but suffice it to say, I think my hematocrit was closer to 20 today going into the transfusion, than 25.

I went to a new hospital I've never been to. The satellite/branch clinic that is my home base usually (because it is closer to my home than the main hospital in Seattle) does not do blood transfusions, and because this was sort of urgent and I'm working with my primary care doctor now on this stuff, whose goal is to be super efficient and make things easy on me (she is the best!!), she sent me over to this small hospital about fifteen minutes from home. Even though I had my blood drawn for the type and cross-match last night, which should give the blood center plenty of time to find suitable blood for me, I have developed some antibodies lately and they couldn't find a good match. 

So after initially delaying the appointment two hours, then they finally delivered the blood about 45 minutes after I got there and had my first IV in. Yeah... first IV... Just when the nurse was about to start the infusion, I noticed that around the IV site my skin was elevated - this happened about a month ago on the same arm, and it hurts! The vein gets punctured and so the place in between my vein and the skin starts filling with IV fluid and such. Super gross to think about, and really painful. It will take a few days to flatten out again; it hurts now whenever I move my arm, becuase it's on the inside of my elbow area.

So unfortunately with that happening, the nurse had to take out the IV and put in a new one on my other arm. [Oh my veins, please relax and start working like you used to!] It is really hard to sit through multiple painful IV pokes when you are already exhausted and have a racing heart rate and seeing spots from low blood volume. At this point in my life, what I do is sit there and just imagine Jesus sitting with me, holding my hand. And I imagine what He went through on the cross for us. If He could bear that, I can bear some little pokes, I think to myself. It does help. Hey, you do what works - I'm not a weirdo!

Because they never could come up with a good match for my blood with the antibodies, so they gave me blood that wasn't exactly matched, and administered Tylenol and Benadryl to stave off a reaction of a fever, itching, rash, etc. - the common symptoms of a blood reaction. If I may make a little PSA here, see, this is a reason why everyone that can should get out there and donate blood! Maybe you have antibodies in your blood, and it will be a perfect match for someone in my situation! I was lucky enough to get a perfectly matched transfusion of two different units last time.

Benadryl always knocks me out, so I dozed off while most of the first unit transfused. This worked well because Hubs was with me, there happened to be a free recliner and TV next to me for him, and he got to watch Man movies like "The Patriot" on AMC while I dozed and got my transfusion today. A good mental vacation for him, my faithful companion :)

Both units ended up going in fine, thank You God, and we saw much improvement in my blood pressure and heart rate as the afternoon progressed to evening. I am having some flare up issues with bleeding still (probably because my platelets are still not up where they should be) and so I am losing more blood. I just pray that stops tonight, no more bleeding! and I will wake up tomorrow with a new feeling and a lack of disease in my guts. That is my prayer every day. It is really hard to sit and watch your body operate in such dysfunction, and not be able to do anything about it. I've done the meds, the diet changes, the stress reduction, the extra resting... this is one left up to the Lord for a miracle. But at least I was able to get blood today, and come home to my own bed and my sweet family tonight. Even on my worst days, there is so much to be thankful for. Especially that I am still breathing, walking, talking, thinking, hearing, smelling, seeing...

I almost forgot, I have a praise report to share. Despite stopping the N-plate shots, my platelets were up to 11,000 on Monday. That is a great improvement from the 2,000 level they were at about two weeks ago. My doctor was encouraged along with me that they went up "on their own." I believe it's a combination of the natural supplement I'm taking to boost platelets, and answer to prayers! But it was really wonderful to see that improvement. Now to get them up to above 150,000 where they belong!

I will wrap up this post with a verse from Psalm 73 that I had on my mind tonight. I am grateful for this truth:

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.