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

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

Seeing and Celebrating

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

TC13

It is a wrap! And in the words of my pastor, Wow wow Wow Wow wow!
We just finished an incredible Team Church Conference at Champions Centre. The best ever. Jesus was present in and amongst everything. It was over the top rich in quality and quantity. We are all reeling from the worship, wisdom, watershed moments... simply too much to sum up yet or in a short post.

I just want to say, I am psyched that finally, my fifth year at CC, I got to live my dream of serving at TC Conference. I am exhausted, I gave it every thing I had. And that is enough. My body stuck it out (yep I'm completely worn out today, but I made it!) and my labs even came back this week BETTER still. Thank You Jesus!

I love this House, I love my church family, Iove Jesus' church, and am so excited as we are in amazing days of love and unity amongst the Body of Christ. We are alive in this era - these ARE the "good old days" - for such a time as this! Great things ahead... :))

Me and my Hubs ready for Day 3

(I'm looking a little tired but so happy!)

My beautiful friend Nina and me last night in the TC13 Photobooth

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

Crock Pot [keepin' the kitchen cool!] GLUTEN FREE Banana Bread

Wow, what a ride it has been these past ten months. There is much to update, so much I want to share that I've been unsure of even where to start. This post will break my writer's block/overload, perhaps, since it's just for fun! :)
The one health update I'll share today is that I am thrilled to report, my platelet count has been steadily climbing since I left the hospital in June! Yesterday it came back one point below NORMAL range!  God is healing me thru and thru!

So onto the banana bread fun!
I discovered this idea when we had a major heat wave the weekend of Mother's Day, and I wanted to make quick bread for the brunch, but did NOT want my kitchen to get any hotter than it already was!
Enter my favorite kitchen appliance: the crock pot! This recipe as my inspiration,
I made some modifications and voila, Banana bread in under three hours with no extra mercury rising in the house.

What you need:
1 3/4 cup Trader Joe's Gluten Free flour blend
1 tsp xanthan gum
2 tsps baking powder
1/4 tsp baking soda
1/2 tsp sea salt

3/4 cup coconut sugar (check out Madhava brand Organic Coconut Sugar thru Subscribe & Save on Amazon!)
1/3 cup organic butter or coconut oil
2 cage free eggs, beaten
2 ripe, medium to large size bananas (or 3 small), mashed
1 tsp pure vanilla extract (I use Trader Joe's Pure Bourbon Vanilla Extract),
1/2 cup frozen organic blueberries

What you do:
Grease the crock of a 3 (ish) quart slow cooker with butter or coconut oil. Set aside.
In a medium mixing bowl, sift together all dry ingredients except sugar (flour, gum, soda, powder, salt).

In another bowl, cream together butter (or coconut oil) with coconut sugar until blended. Gently mix in beaten eggs, mashed bananas, and vanilla.
Add in the dry ingredients slowly, blending well with a whisk.
Stir in the blueberries (no thawing needed).

Pour batter into pregreased crock, smoothing the top with spatula. Cover and set to High. Walk away - you're basically done! :)

Check the bread with a toothpick after 2 hours. It will be done between two and three hours. (Slow cooker power levels vary by brand.)

When bread is done, toothpick should come out clean, but bread will be moist and oil sizzling on the edges. Remove lid and let cool/set up for five minutes. Cut into pieces and scoop out of crock, or turn out the whole loaf onto a plate and cut to serve
Enjoy!

*Sometimes it is recommended to prop open the lid with a wooden spoon when baking in crock pots. I've never done this, but know it's an option if bread is too moist/not setting up.

Update: This recipe is even more fool proof than I thought! I ran out of Gf flour blend but had ripe bananas to use, so I thought I woukd experiment.

I used 1 cup brown rice flour and 3/4 cup teff flour. I was much more lax with the mixing too, I just combined all the wet ingreds together, added the dry, and put in the crock. This time I set the slow cooker on Low and let it go 4 hours. It turned out great - moist and delicious again! it was just slightly darker in color because of the teff flour.

so there you go, this recipe is even more versatile tban we knew!

If you make any changes be sure and comment to share your experience :)

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!

Four Units of Blood Later...

...I feel like a new woman! It is a slow recovery, but I am making a comeback and starting to feel like MYSELF again! It has been such a long time... since August, I think, that I had energy and felt "well."

I had a bit of an emergency last week. My blood volume and red blood cell count got so low, due to colitis bleeding leading to TOO much bleeding from my low platelet level (not able to clot), I had to go to the emergency room and then be admitted to the hospital, and received four blood transfusions (four units). Normally when your hematocrit and hemoglobin are low, the standard is two units. I got double that - phew! One of my nurses even said he had never heard of someone getting four units at once.

I found out that my numbers were so low (hematocrit: 15!) that I could have had a kind of heart failure. I am thankful I had the sense not to get up much from bed for the three days it took to figure out I need serious medical care. One of the doctors said if I had exerted myself, and got my heart working harder than it already was - and it was working hard; my resting pulse was 140, yikes - that I would have had some problems...

Thank You God for your protection and wisdom, and my husband taking care of me so I could stay safe!

Now it's been a few days, and I am slowly recovering. I haven't had bleeding issues, praise Jesus for His healing mercy, and my hematocrit must be hovering around 30 or 32. It was 32 before I left the hospital last Friday. That is a WONDERFUL number for me! I am able to get up in the morning and get out of bed, greet my baby girl and get her up for the day, changed, dressed - never take those things for granted, because I haven't been able to do them in weeks, maybe months. I missed that. Not caring for your own child, you start to wonder, "what makes me a mom?" It's all good now, but it is an interesting struggle when you are in that position.

Yesterday was the first day I felt "well," and my Hubs and I got out and did a bit of adventuring together. One of our favorite things to do is go to the thrift store, where they have this HUGE yard full of trash and treasures, and see if we can find something we need or could use. We found a great old wooden rocking horse, we're going to sand it a bit and get it spruced up for Victory. I had to give it a test ride, of course, before we bought it!

Well, I am going to get up and do something fun and productive now for a change! :) Join me in faith believing and praying that I am now healed, that it will only be improvements continued from this point, and no more backwards steps into any other illness or issues. Seize the day, friends!

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.

Update: (I Don't Have an) Infectious Disease [Yay!]

Just a quick update:
I went to my appointment with an Infectious Disease specialist today. She wasn't concerned about anything hinting at a bacterial infection, it turns out that the cultures were probably just contaminated somehow between my surgery and the pathology lab, which is fairly commonplace. So, no antibiotics for me!

The Dr said it is more likely that I had a virus of some kind, and they usually just run their course and that's it. In order to rule out a virus, she ordered a bunch of tests to see if anything shows up that was obviously the cause of my swollen lymph node. She ordered tests for a bunch of viral infections, including the kind carried by cats because of all the nasty poop encounters I've had this summer, gardening in our stray-cat-infested yard. (Oh, those dirty furballs and their nastiness!!! I digress; that is another story for another time.)
From simple Mono virus to Toxoplasmosis, which is a virus found in cat poop, to HIV because I have had blood transfusions before (that one will be negative, I declare in Jesus' name!), I think I set a new personal record for the number of blood vials drawn at the lab - fifteen! I sat and drank two cans of juice before leaving the lab, and oh am I thankful they had juice. It was past lunch time and all I'd had to eat before then was a small bowl of acorn squash and some tea.

So those test results will be trickling in over the next week to ten days, and we'll find out eventually if it was a virus. Post transplant life is never dull :)

No Lymphoma!

Praise Jesus, I do NOT have lymphoma!!!

Hubs and I went to my post-op appointment last Wednesday, and (I just love this doctor!) the first thing that happened when the doctor opened the door was to say, "Well, it's not lymphoma. I just got off the phone with pathology." Way to lead with the good news, Mister! I so appreciated that!

After my appointment, we went home, picked up Victory and my mom, and went out to dinner. One of the best Mexican restaurants in the area has recently started cooking some of their things gluten-free, taking measures to prevent cross contamination and such. (What a nice thing, by the way!) Before my appointment, I'd said, "Let's go to Azteca after we get the good news!" I was doing all I could to walk out the confidence I felt in my heart, and one way was to plan ahead a celebration in anticipation of the great report I was about to get!

Each time I walk through a challenge, a fight of life you could call it, I learn more about who God is and what He wants to be known for in our lives - faithful, ever-present, trustworthy, unconditionally loving, always caring, always having our best in mind... I could go on and on! I walked through this challenge with the most peace and confidence I've ever had through a battle, and God was there on the other side with a great outcome. However, I think it can be a battle in itself to ignore that little voice in the back of our minds that says, "Why are you so confident? What if it turns out to be bad news, and you've been telling everyone you can that you are healthy and God has this covered? What if you look like a fool?" That is really a self-centered train of thought, and if I'm thinking that way, it reveals that I've taken my eyes off of my faithful Father and I'm looking at myself and the people around me for answers.

I love that I was counting on a great report from my great God, and He had the situation covered the whole time, and we were able to go out and enjoy a nice dinner and bask in the relief and peace of knowing I was NOT about to start a crazy barrage of testing, appointments, and treatments. Thank You Jesus!

In case you are wondering why my neck did have an enlarged lymph node, we are still waiting for the full report, but remember those cultures for bacteria and fungus that they started after my surgery (I briefly wrote about it in this post)? At the time of my appointment, only some of those tests had come back (it can take several weeks for anything to grow). Two bacteria had shown up so far. And because I'm allergic to the antibiotic that they usually treat this bacteria with, I am one of the lucky ones (ha) and now have to see an Infectious Disease specialist on Friday to go over the rest of the results and get a specific treatment in place appropriate for someone with an allergy and also immune-suppressed because of a transplant.
My ENT doctor said we are getting oddly close to a scenario out of the TV show "House," because they have no idea why a bacteria would have settled in my neck, and still no clue how I got an infection in the first place. Craziness!

So, it's off to the Infectious Disease department of the hospital on Friday. Hubs and I are going to turn it into a date afternoon, because we'll be going up to Seattle for my appointment. It will be interesting to meet with an ID doctor; I've never been to one before (that's a good thing I suppose!). The other day I was thinking, I should get a checklist of all the different medical specialists and check off which ones I've ever seen  -  I think it would be a good chunk of the list. At least I can't say my life has been boring :)
Here's hoping the infection is mild and taken care of even before I start antibiotics! And also that the antibiotics don't send me into a major UC flare by killing off my good gut bugs! (Gotta stock up on probiotics, that reminds me!)

That's all for now. I have been daydreaming about some recipes to share on the blog but no photos or writeups yet. Stay tuned as it's slowly (stubbornly) changing to fall around here, and I know I'm going to be inspired by the apples and pumpkins all around... Yum!