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 ;)

--------------------------------------------------

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?

--------------------------------------------------

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!

Wrapping up 2013

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

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

Psalm 116:1-19 MSG:

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

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

turn Weak into Strong

Yeah, I kinda dropped out of the Blog Every Day in May challenge. I'm okay with it. I've been been having a tough week, a colitis flare and my platelets are being stubbornly low. I'm going to win this battle, I keep saying it and it will happen eventually.

So I just wanted to check in and let you all know I'm still here, just not all about blogging at the moment. I'm still reflecting on an incredible Oxygen womens conference last week, recovering from a full weekend, and marvelling at the daily blessings that come from being a wife and a mom to two incredible people I have the joy of calling my family.

I do want to share share one thought that's been trudging around my head all day today. It's the second part of Joel 3:10 b, "Let the weak say I am strong."
This verse dropped into my path yesterday when I was doing some reading, and it is so timelyfor me. In tbe times that my blood count is dropping, it's difficult to watch and feel the effects in my body. I have learned recently that I can declare strength from God, literally speak it with my mouth, and it makes a difference. It makes my body respond, because there is life and hope being spoken. In the struggles of life, including physical, we are not powerless!

Read the Message translation: "Let the weak one throw out his [her] chest and say, "I'm tough, I'm a fighter!"

That's what I'll be doing this weekend, determined to bounce back from this setback without a hospital visit!

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.  :)

Steady On

I am laying on the couch waiting for a pain med to kick in. My joints are burning something fierce, all over my body. On my left side, nagging at me, my spleen is so enlarged it is poking me in the tummy, lungs, diaphragm. Meanwhile, I think it's my liver that is bothering me on my right side; I felt twinges of pain in my back and shoulder this week, perhaps confirming the bad lab numbers we got this week. Steady on, Em.

Today I was blessed to receive three units of blood, to raise my hematocrit up from the stinky 22 it sank to over the past two weeks of decreasing platelets and increasing UC bleeding. The blood bank couldn't provide a perfect match for me due to my complicated antigen list beyond a simple "O positive" label.
But all went well!

First IV had no blood return - deep breaths, steady on. Had to take premeds as a precaution (Tylenol and Benadryl) and had a fever and felt very flushed for the first unit. Steady on. Eventually I had a nice nap while Hubs read through the first five chapters of "Huckleberry Finn."

A friend has been encouraging me with that short sentence in past days and weeks. I face a challenge, get my brave on, overcome the hurdle, celebrate... then pow, another setback. "Steady on," she reminds me. Okay. I can do that. There are so many reasons to celebrate in the midst of a season of challenges seemingly unending.

Respond to every instance of negativity with that truth set in your mind. And steady on. Pick up your courage, put on your peace, look to the heavens- He is surely watching, never letting you out of His sight. No need for hysterics. No need to dump your confidence - remember His promise: He will richly reward it! Steady on.

When I got the call late Wednesday evening, from the on call doctor passing on the concern the lab had called her about minutes before, I'm happy to say I remembered "STEADY on." Listen to the words - "your hematocrit and platelets are critical," write it down. Ask questions, hear the answers - "a transfusion is highly recommended. Much lower and your heart will be working too hard." Hang up, and talk to God. "Lord, I wish this wasn't happening again. but You are on it. I'm confident You'll see me through. Thank You for that."

And He did. He does. He WILL.

Last weekend we got to go on our trip. Thank You, God, for answered prayers! It rained much, and I was sick too much to be fair, being our first vacation in years. I was tempted to cry all day, commiserate with myself at having to cancel all plans and miss the special time with friends that we planned.
But God has given us the most gracious friendship. They came to our hotel, and we had a great time together despite my limits. I even took a nap when needed, and no one minded a bit.

How that simple gesture, soothed the disgust I feel being the "sick girl" who cancels plans, who comes off as flaky and noncommittal, when that is the farthest from who I desire to be.
And that evening, I felt better, and the next day, more so! And the sun came out. And it was a special time for my little family, making memories, celebrating life.

When something goes awry, a spill and a mess occur, plans are shoved off course, hopes are dashed- but that's just it! Hopes are NEVER dashed. Stay confident. There can always be a course adjustment. Plans may change, but purpose sticks around. Purpose remains, if you let it.

Tonight is uncomfortable. Well less so now... that pain med is kicking in. Thank You for that too, Lord : relief.
"But!" But I was able to receive blood! A little pain for (hopefully) weeks and months of strength and energy. A trip that didn't go as planned. But! the memories I recall now are so rich!

A daily life of late that looks nothing like I thought it would. But! Wealth of love, joy, and meaning like I could never plan for myself.

Choose to be flexible in life. Always let the hurts go, and never miss a chance to celebrate the gifts. Next time you face a tough situation, remain confident. Remember those two words. Steady on.

Hebrews 10:35-36. "So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God you will receive what He has promised."

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!

Happy New Year!

I wrote this post a few days ago, but Blogger and my computer gave me all kinds of trouble and froze multiple times, so I walked away from the situation until we could all settle down. (LoL) We are all getting along much better now, I'm happy to say, so here is another update :)


It is now 2013... we made it! This is going to be a great year, I can feel it. A year of miracles, healing, favor, good things!

I managed to stay out of the hospital through Christmas, and oh how sweet that was! However, I had a bad UC flare at that time and with my low platelets, lost too much blood. Got my blood counts checked (CBC) on December 26th, and we were hardly out of the lab before my doctor called (I'm used to this by now) saying, "Your platelets are low!" etc etc...
It took some convincing by my Hubs, but finally we got my doctor and his nurses to understand that I got my labs done in order to check my red blood counts - hematocrit and hemoglobin - because I knew I had lost much blood and was feeling dizzy, seeing spots and getting winded walking a few steps across the room. One day later I was in the hospital for thirteen hours and got transfused two units of blood.

Here is where I give a huge shout out to blood donors - thank you!!! It is so cool to me that when I have to get blood (once every few years it seems), there are multiple people in my world that volunteer to donate their blood to me, or share with me that they regularly go to donate their blood, especially those with rare types like O negative. You guys are my heroes, thank you so much!!! Donating blood is such a neat thing to do if you are healthy and strong; you really are saving lives!

After my blood transfusion I felt much improved with a lower heart rate and breathing easier, but I have lost so much weight in the past few months, my muscles are just so weak. It is no fun! Then when we got home, Hubs was so kind as to share his cold with Victory and me, and with my low white count, mine turned into the worst sinus infection ever. I was wishing to be in childbirth labor the other night, instead of the sinus pain, it was that bad! I avoid antibiotics, but in this case it seemed really important to get them, so I went to the doctor the other day and started a ten day course. And praise God, every day since then has been a small improvement. Being a transplant patient with already suppressed immunity, I always take longer than average to recover even from a cold, and this isn't any different. But it could be a lot worse, and I am thankful I have been able to rest every day and focus on getting well!

So needless to say, we had a quiet New Years' Eve and Day at home, but it was good to rest and just be together. I'm grateful I was not in the hospital over Thanksgiving, Christmas, or New Years! It has been a challenging season, but things are getting better every day. I'm seeing it and also believing to continue seeing it! I have lots to do still in this life; I'm not going anywhere anytime soon :)

A huge part of why I am grounded through all the health crises I face, is that I look for and allow people of God with wisdom to speak into my life. I want to keep things in perspective of my faith and God's P.O.V., not get caught in emotions or negative thought patterns. Through conversations, books, podcasts, whatever the resource, there are so many opportunities out there in this age for us, at our fingertips. I challenge you to dive into some great books or download some podcasts this year. Some of my favorite authors/speakers are: Kevin Gerald (his books Mind Monsters and Forces That Form Your Future are must reads!), Steven Furtick (his books Sun Stand Still and Greater will grow your faith and your vision for life),  Mark Batterson (I just read his book The Circle Maker in November/December. If you'll forgive my paraphrasing, it is based on the legend of Honi, who in a horrible season of drought, drew a circle in the sand, started praying for rain, and did not leave that circle or stop praying until God answered his prayer. The book is full of stories of persistent, courageous prayers leading to miracles, and it will give your prayer life a great kick in the pants!)


I got a Barnes and Noble gift card for Christmas, and just bought Joel Osteen's I Declare: 31 Promises to Speak Over Your Life for my Nook. This book is so encouraging. I am excited to learn new ways to speak God's promises of life and health and promise into my future. In many places throughout the Scripture, we're reminded that our words have creative power, so use your words for good things. "Words kill, words give life; they're either poison or fruit - you choose." Proverbs 18:21


I think the best resolution we can make every year, even every day, is to continue to grow and develop ourselves, our faith, our vision for the legacy we want to leave behind. When we achieve that, we affect not only ourselves but everyone and everything in our lives, in a good way. What an awesome privilege we have in life, to get to grow and become better!

Update... (and Hurray, tomorrow is Christmas Eve!)

Hello friends!
Christmas will be here in two days, and two days after that, it will have been two MONTHS since my last update! Oops! I've often thought about needing to fill you all in on what's being going on, but haven't had the energy or desire to sit and type it out. I sat down today and typed this out - it might be a bit rambling but it's an update :)


So the last time I posted, we were just starting to walk through the treatment process for ITP (immune thrombocytopenia pupura) which we were told was my diagnosis for the sudden drop in my platelets. I started the N-plate ("romiplostim") shots on a weekly basis. Our weeks were full of clinic appointments, lab blood draws, and infusion center appointments for the shots. (If I never have to go to that medical center again, I will be a happy woman! I know it too well!)

My platelet counts seemed to be responding to the shots for the first month, at least. But in recent weeks, despite increasing doses of the N-plate each week (which made me SOOO SICK, by the way) the numbers were not going up, or actually decreasing still. My hematologist recently decided to declare that he isn't sure I have ITP after all. After getting nine shots that are just to treat ITP? That wasn't so encouraging, but Hubs and I began to understand where the doctors are at - things aren't responding to their medications, and they are stumped. Period. I have become a guinea pig and they are shooting in the dark now with their ideas. They wanted me to get a full neck to pelvis CT scan last week, to look for "more significant" lymph nodes to biopsy, because they are now thinknig they may have "missed lymphoma" in September after taking out the node in my neck.

Phew. And that is the short, no-details version of this story that has been playing out for two months. All the while, we have had Thanksgiving and the Christmas season come along, and I've been trying to create some traditions and memories for our family especially our sweet Victory (who is 16 months old today!). It has been a testing time for us. I was SO SO sick from the shots, I have decided I can understand a little bit where chemo patients are at when they are so very sick. I had no desire to eat, I've lost ten or fifteen pounds (which I didn't really need to lose... Baggy skinny jeans aren't a good look!). I was more exhausted than ever before. I had terrible joint and muscle pain and aches. It was a messy time, and made worse because it took about a month to convince my doctor that the symptoms were definitely from the N-plate, because of a pattern we noticed, and I needed some medicine for nausea and the like.

Thankfully, the week they were finally listening to me, I started to feel better. But Hubs has missed so much work, we have gotten closer than ever before to not being able to pay our mortgage. We have been gifted groceries and gift cards from friends and family for food and gas. Our church family continues to be the most amazing body of people we've ever known. I am so proud to belong to a church that looks like the Church God desires and created to exist on this earth. Surrounded by our faith family, we have never felt alone or without hope. The best people on earth - I'm convinced!

Last week I had a short overnight from the ER to the medical floor of the hospital. My clinic called me right after we left the blood draws and said my platelets were down to 3,000, and I had to go to the ER because they were concerned about bleeding. When they took my labs at the hospital, their lab came back with a level of 13,000, and after a platelet transfusion (my first ever) that night they went down to 10,000. That's when the doctors really got confused, Lol!
I talked them into letting me go home the next evening, because watching for bleeding there and being bored, away from my daughter, and paying too much money, versus sitting at home where I want to be, watching for bleeding - it's a no brainer.

Since I have been home, God has sustained me every day. No serious bleeding, no ER. I have been learning so much about what it means to ask God for enough strength and sustenance for the day, and leaving it at that. It is much like Him providing manna for the people in desert. Just enough for the day, no more, no less. Wow, what a blessing that growth has been to my faith and my daily life, already.

Last week was a wonderful change of pace for us. I went to see a new doctor, a practitioner of alternative medicine, who is also a follower of Jesus. Wow, what a refreshing time it was, where we were empowered, encouraged, and given real, true information about what is standing between me and health. I am so thankful for the new path I have started from that appointment. I cancelled the CT scan which was going to be Wednesday. I cancelled my blood draw, and I cancelled my hem appointment. We all needed a break in our little family, and it was a good decision.
The main reason for cancelling the CT was radiation. Did you know one CT is worth 500 X-rays of radiation? Yuck!!! I cancelled the blood draw because my veins need a break. I had two IVs blow in the ER last week, my arms are a mess. And I saw no need for the appointment without labs to discuss. I think I will get my number checked next week, but I have so enjoyed the break from the hamster wheel of testing and results and bad reports and possible diagnoses. It can be really negative and sometimes you just need to get out of it!

I am just so grateful to be out of the hospital, to be with my family, to be able to go to church today and have gone out yesterday and made a Christmas time memory with my sweet Hubs and daughter. I'm going forward each day approaching it one day at a time, asking God to sustain and strengthen me enough to be able to do what He has for me at that time.

I believe healing is still ahead for me. Every day it has not happened yet, I am one day closer to the day it does happen. God is willing and able to heal today just like Jesus did in the New Testament -He's the same yesterday, today, and forever! I am looking forward to being healthy and strong again one day, yet in the meantime, I will not let this testing make me a bitter or negative person. I will become a better person from every challenge I walk through; that is a commitment I will never regret! And to choose joy in every moment that isn't so joyful on the surface - that is my gift to myself, my family, my friends........ Our greatest power is our power to choose. Thank You God that I get to choose my response to every situation in life!

So stay tuned in 2013... greater things are ahead for every one of us that pursues them!

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!

Home from the Hospital, Hurray!

For those of you not in my world on a daily basis, I thought I'd better update and let you know what I've been up to. My last update stated I'd be starting my Romiplostim shots to treat ITP later that week.
Well, things got worse a little too early in the week to wait. We were on the phone off and on with my hematologist all day Tuesday, discussing the treatment and if I really had any option to wait or go with something other than Romiplostim, because I really didn't want to have to stop breastfeeding just cold turkey and without tapering down Victory's feeding schedule, or without either of us being ready, frankly! Once I'd worked through all of my questions, concerns and frustrations (have I mentioned I have a really patient, kind doctor? because it needs to be mentioned) I decided, ok, I will go ahead with that plan. During the last conversation with my doctor, it was my husband on the phone with him. I asked him to ask my doctor if he could put in a lab order to check my platelets. I was really not feeling well - just exhausted, weak, and like things were just not right in my body. He put in the order, we drove the fifteen minutes to the lab, I got my blood drawn (and received much more concern from the phlebotomist than the day before, apparently I looked a lot worse!), and we left the clinic and started driving the long way home down backroads, because the traffic for the Justin Beiber concert that night was making the freeway look like a mess and a long wait.
Within ten minutes of leaving the clinic, my doctor calls - my platelets are down to 3,000, critical in the medical world. Criticial meaning, you're not just looking out for bruises or even nosebleeds, but your brain could just start hemorrhaging at any point. Not great news. Doctors orders, I had to get to the hospital right away and be admitted through the ER, and start some treatment.

I was amazed thinking about how I almost didn't get my lab drawn. I'd made such a fuss that day that my doctor had said we could wait until Thursday to draw any more labs. Definitely a God thing that I felt funny and spoke up!

So we got home as fast as possible (which felt like it took FOREVER!), threw some things into bags, I grabbed the ripe bananas on the counter to take with us because I figured they'd be black and very scary by the time we got home - not knowing when that would be, and we drove away. Dropping Victory at the grandparents' house (by the way, I am so grateful for amazing parents that I can trust to keep my baby safe and well taken care of, and the fact that they live in the same area. Thanks Mom and Dad, you are a blessing!) we continued on to the hospital. Driving there, I got a headache, and when we were waiting in the ER for my room to become available, it got worse and worse. When they tell you that your brain could hemorrhage any time, a migraine out of the blue makes you a bit nervous. It stuck around actually for the next four days, and finally went away when a resident thought to give me something called Imitrex (not sure on the spelling of that) which is for treating migraines. That was quite a week of pain I never want to repeat!!

I am too tired still to get into all the details of my hospital stays (yep that's plural-part of the long story), but I'll do a quick bullet point list, leaving out a bunch of the medical details I'll try to share later:

• Admitted to the hospital Tuesday night
• Given oxycodone (on an empty stomach - blech) for the headache, Tues late evening - didn't help
• Given tramadol for headache early morning Wednesday - didn't work
• Had to wait for Zofran too long, and threw up from oxycodone and tramadol - headache still there
• Nurses were so helpful and gathered sterile specimen containers and zipper top bags so I could pump milk, and they put it in the refrigerator so we could keep if for Victory. My doctor agreed to put off my shot one day so I could have more time to pump. That was really nice of them and meant a lot to me.
• Two infusions of IVIG Privigen (intravenous immune globulin) Wednesday 3 am and 8 pm
• Visit from my parents and sweet Victory Wednesday afternoon :)
• Visit and dinner and magazines to read from wonderful friends Wednesday evening :)
• Woke up and got sick, felt terrible, got everybody worried and wanting to keep me there more days - then felt much improved in the afternoon
• First Romiplostim shot Thursday 1 pm
• Convinced the doctors I was feeling better (I really was for a time) and got discharged Thursday around 4 pm
• Driving home, that night, next day, next evening - resting and fighting the horrible headache and feeling miserable
• Fever of 101 Thursday night and early Sat morning - went up to 102 point something then, and :sigh: I had to go back to the ER. Threw up at home as we were leaving - good thing I had a collection of pink buckets from the hospital stay 18 hours earlier!
• Arrived at ER, amazing husband told them I'd just been there thru Thursday for low platelets, I am a liver transplant patient (always a big deal when you have a fever and are in the ER - they take it very seriously), and had a high fever and horrible migraine type headache. They took my temp and it was up to 103. 
• I got an IV, they gave me a pain med called "Delottid" (spelling?), it helped headache, it wore off, they gave me more Delottid. In the meantime someone drew some blood for labs, I was taken for a head CT to look for brain bleeds, they put a mask on me because the doctor thought there was a very small chance I could have infectious meningitis, they gave me Tylenol in an untraditional manner to get the fever to go down, and they put in a catheter to get urine to test... and all I remember besides that is waking up every few hours, looking to my right and seeing Hubs leaning over the bed rail trying to sleep - or praying - I haven't asked him what he was doing. I just remember waking up, looking over, seeing that, and crashing again. Like something out of a movie I tell you! I have quite a colorful medical record, but I am not usually the girl creating a hectic scene in the ER. Interesting experience for me!
• Turns out we were there waiting to be admitted, for 11 and a half hours. Have I mentioned that my husband is a saint? He is the most incredible man I know, dealing with all of my nonsense health issues, and all the ramifications of those - financial and otherwise - and the guy never complains. He is a saint, and I am blessed.
• Somewhere around 4 pm I was taken to my room - woke up enough to walk from the ER stretcher to the bed (four steps or so). Went back to sleep, woke up at dusk. Fell back asleep. Turns out that the anti-nausea med they were giving me with the Delottid is very sedating, creating that 24+ hour blur I have. All that sleeping + high fever = a crazy damp bed, let me tell you!
• Saturday around 7:30 pm a neurologist came in to my room and said they wanted to get some spinal fluid to look for meningitis - because of the ongoing headache, high fever, and nausea. Translation: spinal tap! Another one for the medical bucket list! It wasn't that bad.
• I think it was Sunday morning, a resident suggested I get that migraine med, and I tried it and PTL, my headache left, finally!!! I got another dose of that when it tried to sneak back, and it worked and kept it away - and it hasn't been back since!
• Sunday I don't remember a whole lot, except kicking my hubs out to go to church and get some encouragement, which he did. Turned out he got a LOT of encouragement, hugs, prayers, LOVE! We have an amazing church!
• Sunday afternoon friends came to visit after church - more friends came - family and sweet Victory came - then everyone was gone.
• Sometime in there they came back with a report from my spinal tap that there were white blood cells in the fluid, which is called "aseptic meningitis - inflammation of the meninges." Also, we learned that the IVIG I got infusions of the previous stay can cause something called "chemical meningitis." 
• They had started IV antibiotics late Saturday night I think, and continued them late Sunday night/Monday morning.
• Monday all the doctors that had been following me came through and gave their OK that I could go home, as my fever was gone, headache was gone, nothing was coming back on my spinal tap, and I was feeling much better in general.
• The doctors concluded that my symptoms that brought me back to the hospital were either a reaction to the IVIG or Romiplostim, just a severe reaction not usually seen especially when only 5% of people react at all (agh, why do I always have to be the small percentage on the negative side of things? LoL), the chemical meningitis from one of those, or an enterovirus (stomach bug/flu). No real answer, they said, but those are their guesses. The spinal fluid cultures are still cooking, and they told me they will call if something shows up, and I need to come back in the get IV antibiotics. So far so good :)
• We left about 6 pm Monday, and I was feeling so good! Since then I've probably done more than I should (I have a difficult time sitting still, I want to DO things always!) which is probably why I feel weak and tired often. But I am feeling good, my platelets were at 32,000 Monday morning, the only bad thing is that my white blood cell count is now at a point where they get really concerned, and I have to be extra cautious of sick people and going out because an infection would be a bad thing to get right now. They have no idea why my white cell count is so low, so if you like, pray with us that they can figure that one out and find a simple solution.

Five nights and six days, and my husband hardly left my side. I am thankful that his employer and managers are understanding and concerned, and never make him feel pressure to be at work when he simply cannot because of my health issues.
I pray that God provides the resource that we won't have because of this last week of missing work, and provides for the bills that are on their way. Only He knows how we'll get this paid for. I even pray that somehow we'll still be able to take a family trip this year. We had just started planning a road trip to the old west, Yellowstone Park, Mt Rushmore, and many other fun and historical places, and I hope we can still do it. Six years and one vacation is not enough, especially for a family that lives with the kind of pressure we that is there, from my ongoing challenges.

Thank you to my church family, friends, relatives, and blogging pals near and far that have been praying and cooking meals, doing laundry, offering to babysit, and some have even sent cards and given resources to us that are so helpful in this time. It means the world to my little family that we aren't alone in this fight, and so many others are believing for my total healing. Thank you! I can't wait until that happens and we can all celebrate together! Xoxo

[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!"