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!

Things I'm Most Afraid Of (BEDIM: Day 7)

This post is a couple days late, and I was going to just let it go. But I changed my mind.

The prompt for Day 7 is "the thing(s) you are most afraid of."

Let me start by reminding you, I so am not perfect and I so don't have it all together. But after thinking about this prompt for the week, I realized that in my last fifteen or twenty years of life, I have had to face just about everything I was afraid of. And more recently  I have learned how to capture a fear trying to root in my life, and throw it away. (Thank you Jesus, PK, and Joyce Meyer!  ;))

• Spiders. I defeated that when I had to deal with a giant tropical spider that came home in our grocery store bananas. Boom!
• Death. Face critical health situations enough and you'll make peace with this eventual fate too. Just not happening yet, not even close!!
• People not liking me. Yeah, life is too short to let people and their toxic vibes bother ya. Hurting people hurt people, and 99.9% of the time people have issues with themselves, not you.

So those were my big fears, and I know they resonate with most of you out there. We are all just human  :)

Now, I do have something I would identify as the thing that tries to overwhelm me. And that is because it is overwhelming.

I am overwhelmed by the idea of FOREVER. Of eternity. Of no more sense of time. Of going on and on, and on and on.......................

Wow, when that bugger creeps in, does it overwhelm my mind and make me get lost in my head.

I believe in Heaven and I know that I know I will be spending forever with my Creator when my time in this life is done. I believe what the Bible says about Heaven- that it is a beautiful, perfect place God created with His people in mind. That it will be a place of JOY. Peace. Love. Worship. Freedom and fun! Reunions. Relationships. Life ABUNDANT, with no tears, sickness, or pain.
And I let those truths flood in at those times when my mind goes down that imploding path of too-big-way-too-big-to-comprehend thoughts (which God never asked me to think in the first place!).

As my best friend aka Hubs encouraged me a few years ago, "we are all going to live forever, no matter how you look at it. We get to decide where we spend that forever."
And that helps me. Because I think if there is a true fear I have hidden in this thing, it would be the fear of spending an unending eternity alone.

How I am grateful that the greatest truth about my forever is that I will never be alone. Heaven is the place we get to be in God's presence forever. Never ever alone!


I hope this encouraged someone out there. Perhaps my most revealing blog post ever. So if you have anything to say, let it be kind.  :)

What do I do? (BEDIM: Day 6)

Day 6 of the Blog Every Day in May challenge: "If you couldn't answer with your job, how would you answer the question, "what do you do?""

I have been to enough parties, weddings, and other small-talky events since my last full time job (four years ago) that I have a lot of practice thinking about this. I for one would rather hear a list of someone's varied talents and pursuits than a description of their nine to five hours. That's not how American society works, but I secretly wonder if I am not alone on that.

Without further ado, here is a surely incomplete list of "what I do:"

• I breathe
• I think
• I dream
• I endure
• I hope
• I believe
• I choose joy
• I love
• I believe the best
• I help
• I nurture
• I grow
• I read
• I learn
• I problem solve
• I get creative
• I hunt for treasures
• I ask
• I listen
• I give the benefit of the doubt
• I welcome and include
• I empathize
• I feel
• I hear
• I pray
• I make the best of things
• I fight on
• I feed my faith and starve my fears
• I speak truth
• I cherish my blessings
• I wonder
• I worship
• I press in and press onon
• I seek adventure
• I take risks
• I analyze
• I look past the negatives
• I see how things could be better
• I encourage
• I speak up when needed
• I sit back and observe often
• I honor my heroes
• I strive for the best
• I hold myself to (too?) high standards
• I perfect
• I get intense
• I lighten up
• I smile
• I laugh
• I LIVE, determined to not die, until a fulfilled old age

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.

His Higher Ways

Things have not been easy lately. That about sums it up.

However, I have some very special people in my life surrounding my little family in love and prayer. I received a card and a grocery gift card last week from one of those special people. The gift card for groceries was hugely helpful to us in a practical way, and the card is very meaningful to me as well because of the message in it. The words resonate with me in this season and brings peace. It says,

"When my life didn't turn out the way I had hoped,
I asked God for help.

He gently reminded me that His plans were better than anything I could have ever dreamed.

His plans for you will be wonderful."

Printed above that is one of my favorite verses, Jeremiah 29:11:

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

The message in the card reminds me of another verse, Isaiah 55:9,

"As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts higher than your thoughts."

Sometimes when I read that Scripture, I feel like having a childish tantrum and complaining and whining. "Why aren't my ideas and my plans working out? Why can't I be the boss of my life? How dare God not think I know what I'm doing? Waa waa waa"

Yep, total tantrum and completely proving that I'm not spiritually mature yet (that takes a lifetime and more, I'm convinced). But thankfully I am growing, because those tantrum moments don't last as long as they used to. And they flow into new moments, where I am reminded that God is the perfect parent, and does know best. Because of that, I can and need to trust that His fatherly reminder in Isaiah 55:9 is reliable. I can put my faith in it, and trust that when I believe it not only will I live with so much more peace, but my life really will turn out beautifully. He knows best, and I need to be obedient with that simple fact.

I really like The Message translation:

“I don’t think the way you think.
    The way you work isn’t the way I work.”
        God’s Decree.
“For as the sky soars high above earth,
    so the way I work surpasses the way you work,
    and the way I think is beyond the way you think."

The way it is written there, it really paints the picture that God's ways are truly better than mine. When I let go of my small, human perspective and jump into His arms for the greater life He has in mind for me, I won't regret it. Never ever. And that rings true in every experience I've had so far in my 28 years. Whenever I have moved forward into an adventure, into a scary step, with courage and trusting that God's plans were the best, I have been rewarded each time with amazing growth, experiences, and memories.

So whether we're talking about me continuing to face these "incurable" diseases and tough days head on with hope and the future in mind, or maybe talking about you jumping out and taking a risk to move to a new city or job where you know you'll make a greater impact for Christ... the adventures He has in mind for each of us are so unique and beautiful. Whatever it may be, will you join me in facing the challenge with a faith that God has better things ahead than you can dream up, even if there are a few bumps in the road between here and there? Meaning, it won't always be easy, it won't always be sunshine and rainbows... but it will be worth it!

One of my favorite things about Jesus-following life is the great adventure it truly is. There is no more exciting or thrilling or rewarding life on Earth! His ways are higher, His plans are greater...
Let's not let fear or uncertainty or especially comfort keep us settling for anything less!

[Bone Marrow Biopsy] or "Should I Start a "Medical Bucket List?"

How was your week?

I can't really remember past yesterday, as it was a completely exhausting day and my brain decided to take a short strike, I think. :)

I titled this post, "Should I Start a 'Medical Bucket List?'" because lately, it seems like I am setting personal records and doing things I've never done before -not in sports or business like perhaps I wish I could, but in the hospital arena. I set a new record last week - 15 vials of blood drawn in one sitting. And on Monday, I will be seeing a hematologist (already done that - nothing new there) and getting a bone marrow biopsy (that one is something for the 'bucket list').

It all started when on Thursday I went into the lab to get some blood work done, in preparation for a check in appointment with my Rheumatologist coming up this Monday. No big deal, just some basic's: CBC (blood counts), CRE (inflammation levels), etc. No  big deal, I thought. But Friday morning when I woke up, I had two voicemails waiting for me, from that familiar phone number of the hospital's main line. I've had that experience more than enough times, and know it's not the beginning of a quiet day. Ugh...

The first message was from the infectious disease (ID) doctor I saw last week; she was calling to discuss the results of my 15+ blood tests. The second message was from my hepatology nurse practitioner, who was contacted by the ID doctor because of some unusual numbers that showed up on my CBC. I called each of them back, eventually got in touch with both practitioners, and learned that the results from last Friday's fifteen plus tests were looking good. No infections, no viruses, nothing showing up that pointed to why I had those swollen lymph nodes. That was all good news.

Then it was explained to me that the blood work done last Friday, as well as the blood work done on Thursday, had come back with concerning platelet counts. They have over ten years' of records and my platelets have always been stable. Early September they took a drop from 200,000, and now they are below 50,000. The term for low platelets is Thrombocytopenia. This is concerning because platelets are what causes your blood to clot when you are bleeding. A count this low can lead to serious problems if you are in an accident, and if they get lower you can bleed/hemmorhage spontaneously. (Yeah, yikes!)

So, my medical team got on the case. My ID and my Rheum talked to my liver nurse, she talked to a hematologist, and the hematologist worked me in to his full schedule for a consult and the biopsy on Monday. I got between ten and fifteen phone calls from nurses, doctors, nurse practitioners and schedulers yesterday. I had to listen, learn, ask questions, process, wrap my mind around everything as best I could, explain it all to Hubs, and once everything was rearranged, scheduled, and understood somewhat, I had to ensure our sweet Victory had someone to hang out with and that I had a driver. Talk about [MENTALLY EXHAUSTING].

What an exciting start to the week- getting a needle stuck into my back. Isn't this a lovely illustration of the procedure? 

Even though that man is just a drawing, he looks so uncomfortable I feel compassion for him! Totally tense and cringing! I'm grateful that the Hem Dr. decided all on his own to give me something "to make you still like us," as he put it. When a doctor flat out calls something "rather painful," instead of using their typical underwhelming words like 'pinch' or 'discomfort,' you know it will be an experience.

So my rockstar med team is looking at several possibilities of why my platelet count dropped. They are looking at:

• Infection. Likely not this, because I just finished all that testing and all looks good.
• Immune reaction. (ITP) Your body can mistakenly destroy platelets if it thinks they are a threat.
• Cirrhosis. My liver supposedly has microscopic cirrhosis throughout, and this can affect platelet counts.
• Autoimmune disease. Active autoimmune disease like RA and lupus can mess with platelet production. My body is messed up with autoimmune reactions, and this is my hunch as to why the platelet counts are screwy. We'll see. I think my Rheum was looking at this possibility when he ordered 14 tests for me today - checking every possibility.
• "Bone marrow problems." Hence the bone marrow biopsy. They didn't say exactly what they mean by "problems," but it could be a number of things. They want to make sure my bone marrow, where platelets are made, is doing what it is supposed to be doing. The Hem I will see is well respected and a rockstar in his field, so I hear, and I know I'm in good hands as far as getting any answers in the biopsy.

Something else that can affect platelets is an enlarged spleen. I was told after my last CT scan (last spring I think?) that my spleen was a bit on the large side. Hypersplenism (swollen spleen):

Two applicable ways this can happen are from liver disease/cirrhosis and, "Various connective tissue and inflammatory diseases."  I found that very interesting, as that is what I have with polyenthesitis, diagnosed by my Rheum last year. Perhaps that will turn out to be something?

But that's it for now. I'm on strict orders to do no high risk activities, watch for large bruises or nosebleeds, take it easy and go to the ER immediately if I have any bleeding. 

Let me tell you, I am ready to be done with medical tests and appointments and all of this for a while. Hopefully Monday's test and the following rigamarole will be good, my platelet count will climb back up, and my little family and I can go away for a little trip. I think we deserve it; it's been one crazy year for this Momma! :)

I Wanna Tattoo!

For some time now (three years maybe?) I've been tossing around ideas [Scriptures or words inspired by Scriptures] for the text of a tattoo I will 'someday' acquire. In black ink. Probably on my inner forearm. :)

I've thought about getting "Jehovah Rapha" - translated, "The Lord is my Healer." I really like the idea of getting that written out in original Hebrew.
I've also considered just one word. "HEALED" - perhaps with a reference to Jeremiah 30:17* or Isaiah 53:5.** The word "VICTORIOUS" and Romans 8:37***

Then last night, I was hopping around Pinterest (yes, I finally joined the club last month) and I came across a little text/art image, the kind that is all the rage these days to reblog on Tumblr and repin on Pinterest. It was pretty to look at, and it happened to be a verse from Psalm 71.

I read it, and it hit me square in the heart; These are the perfect words.

Psalm 71:14 - "As for me, I will always have hope; I will praise you more and more."

After all this lymphoma scare craziness (beginning, great news, ruling out other stuff), and of course with my past liver transplant, and the challenges of living with Ulcerative Colitis that just won't go into remission, awful physical pain from enthesitis and arthritis, and living with crazy food intolerances with ridiculous reactions, and now they tell me that the liver disease (Primary Sclerosing Cholangitis) has recurred in my new liver, plus the tests that say there is fibrosis that has progressed all the way to stage 4: cirrhosis...

Yeah, I have no explanation for the strength, peace, and hope I feel, except to point to Jesus, and the Holy Spirit, and my Father God. I couldn't do this without the HOPE I have - for healing, soon on Earth (yes, I am going to be miraculously healed one day, and do so many things I haven't been able to do!) and then of course eternally healed in Heaven.

It's a funny thing to be the cheerful, smiling one in a room with a medical professional, a patient, and some "bad news." But that has often been the exact situation I've been in in the past year. And I've thought often of how I would love to have a tattoo that is just there on my forearm, as a constant reminder of who I am in Christ (Justified, Victorious!), what I can count on as a promise through Christ (Healing and Hope!), and/or words that, when other people read them, allow me an opportunity to share a bit of my journey and give glory to God for being my strength and partner through the journey.

"...Wait a minute! A tattoo as a ministry tool???" Doesn't that idea just have the old-guard legalistic religious Christians turning in their graves :)
(That's me being facetious; no need to get offended.)

*Jeremiah 30:17 - "'But I will restore you to health and heal your wounds,' declares the LORD.
**Isaiah 53:5 - "But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed."
***Romans 8:37 - "But in all these things we win a sweeping victory through the one who loved us!"