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

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!

Staring Down the Monster. And, Another Big Needle in the Gut

I have been meaning to sit and write out this post since October, when I titled and saved it as a draft. So much has happened even between then and now, that this post alone could be the chapter(s) of a book.

Early October I had just had my bout with cholangitis, been in the hospital on antibiotics for several days and had a failed ERCP to try and open the strictured (narrowed by way of inflammation turned to scarring) bile duct that contributed to the issue. We'd just been emergency-moved out of our home as there was black mold discovered under the house, and I was processing all of that, along with the newest topic brought up by my liver team the week before: retransplantation.

Retransplantation has gone from being my nemesis, my enemy to be avoided, denied, and not even considered at any costs, to a dark scary monster standing between myself and the life I expected to have when I got married and became a mother, to what it is now... a very possible reality in my future.
Once you're in the position of having to face a fear, and your survival hinges upon facing that fear, you just do it. Not all in one fell swoop easy as pie, but in a graciously gradual process that God takes you through, holding your hand and opening your eyes to what you need to see.

I'm thankful to say, it's not such a monster anymore. The worst part (in my experience) of needing a liver transplant, is how helpless the waiting list can make you feel. You have no control over whether you'll get a liver or not.
Liver transplant is the most intense, physically challenging organ transplant, and livers are not easy to come by. There is no dialysis like kidneys have; there is no life support like a lung or heart machine. It's a perfectly designed filter and toxin-eliminator for the body, crucial in digestion and life itself. There are partial-liver transplants now, where a living donor is able to give part of their liver because it will regenerate, and the piece that is placed in the transplant patient will regenerate as well. However, these kind of liver transplants have a lot more bile duct scarring complications, and when you're already needing a new liver because of your scarred bile ducts due to PSC (primary sclerosing cholangitis) it isn't a great or sometimes even viable option.

*This is the perfect opportunity to make mention of tomorrow's special distinction: February 14th is not just Valentine's Day, but also National Donor Day. If you are not sure you are signed up to be an organ donor, please visit the national registry and get signed up! Follow this link and click on your home state to do so: http://organdonor.gov/becomingdonor/stateregistries.html
Here is a great little informative article just put out in a college newspaper yesterday, detailing some of the most common questions and concerns about organ donation: http://thesnapper.com/2014/02/12/have-a-heart-this-organ-donor-day/
When in doubt, just ask. As an organ donor you can save or enhance up to fifty lives. That's amazing!
There is still a huge need for registered organ donors in the United States, and especially needed are minorities. It's estimated that eighteen people pass away every day waiting for an organ. Consider it and do what you can. Ok, PSA over :)

Back to the not-so-fun scenario of being on the organ transplant waiting list, and having no control whether you'll receive the life saving transplant that you need...
This is where it becomes so important to ground yourself daily -moment by moment- in Truth. There is One who knows my future, and I'm no more in control of the ultimate destiny of my life than a healthy person that the Lord watches over. I continually find myself responding to any mind monsters or doubts that come up, "Maybe so... BUT GOD."
"But, God shall supply ALL of my needs."
"BUT GOD will satisfy me with long life and salvation."
"BUT my GOD will fight for me; I need only to be still."
"BUT GOD knows the way that I take, and when He has tried me, purified me through these challenging times, I will come forth as gold, giving Him the glory."


I didn't update after my ERCP to fix the stricture on January 27th (my guy and I celebrated our seventh wedding anniversary that day in the hospital, by the way! shout out to my amazing hubby!). That was the second attempt since October, and it didn't work. The doctor that did the procedure is world class, has decades of experience, and tried for two or three hours (I can't remember, I was intubated and under general anesthesia for it, and so sick and sleepy for hours and hours after, I missed all the reports, Lol!). But that one stinker of a sharp turn where my transplant was sewn to my bile duct, he just couldn't get the wire through that they needed to put in the stent.

Checking out of the hospital the day after my last ERCP, Jan 27th

Meanwhile, my bilirubin has gone to a level over 20 (normal is 0.2-1.2), my AST/ALT/Alk Phos (liver function tests) are very high, and I've been so jaundiced and itchy, it's been quite the couple weeks!

Orange flavored Cholestyramine, a powder that kind of suspends in water, not dissolving, and you have to just get it down because it's supposed to bind to bile and help get it out, lessening the itching and bilirubin #. It is NOTHING like Orange Juice :)

I was very nauseous for a while, and finally figured out that I wasn't digesting fats very well - that's something you take for granted if your bile ducts are working! I normally eat healthy, nourishing, Primal style meals including butter, Greek yogurt, avocados, full-fat canned coconut milk, etc. I had to curtail that whole way of life and switch to fruit and veggie smoothies twice a day.

This morning I had my favorite: Beet juice, tons of super greens, small handful of blueberries, half a banana, carrot juice, fresh squeezed OJ... Amazing how daylight minimizes the jaundice in this photo. I'll take it!

It's been fun and neat to see how that helped me to recover from the nausea and even keep up with my busy little gal most days all on my own while Hubby works, despite the crazy state of my health. God is always allowing me to live outside the box of sickness that I "should" fit into according to my labs and test results. He's so good!

Tomorrow is the day we are going in for "Plan B" - a PTBD - Percutaneous Transhepatic Biliary Drain. It will be done in Interventional Radiology, where they'll sedate me and use various radiology technologies to find the route, then using a (always too large looking!) hollow needle, go right through my abdomen, through the liver, into my bile duct, insert that handy guide wire that's resisted two other attempts via the ERCP route, and put in a stent to open up this darn strictured bile duct. The plan as it stands is to leave that stent in for up to six months to allow scarring to happen around it, creating a much bigger opening so bile can pass through. Something doctors said after that last ERCP attempt was that, at least visually it appears, most of my bile ducts "have lost function. They are strictured and scarred to the point where little to no bile is passing through."
I put that in quotes because, that's may be a fact, but I choose to keep fact separate from Truth. That report is not what God says. It's what my very smart and caring doctors say, and now that they've gotten this information, I will follow all the steps needed to pursue a transplant eval and be listed, because I am not foolish.
However--- THIS is ALSO where my mind calls forth the TRUTH--- "I walk by faith, and NOT by sight." "Faith is being sure of what we HOPE for, and certain of WHAT WE DO NOT SEE." "Though the vision tarries, wait for it; it will surely come." "NO weapon forged against me shall prevail." "By HIS WOUNDS I AM HEALED!" "AS Jesus is, so AM I in this world!"
You get the idea. :)

Bottom line: I'm not letting this "Monster" take me down. The battle for our lives - whether we're recovering from an addiction, healing from a trauma, trying to bounce back from a failed relationship, or facing some dark diagnoses - the battle begins in our minds. Fill and fix your mind on things above - Philippians 4:8 tells us, "I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse."

If your mind has junk in it, gather it all up like you would rotting food in your fridge, and kick it to the curb! Life is too precious to spend it stuck on garbage thoughts that aren't from God. Life, and life abundant is what Jesus came to bring us - not just in Heaven but here on earth. But it's completely our option - something recently pointed out to me, was that Jesus said, "I have come that they MAY have life..." That leaves the ball in our court.
Speaking from experience, it is so worth the effort and repetition that it takes to build new habits in your thought life, to step out on your sea legs of faith and start looking past a bad report to what the Word says. It may feel completely awkward at first, but it gets easier, and more routine, and pretty soon it is your norm. If you want to do it, you can and you will!



If you've read this far, thank you for bearing with me ;)  This probably should have been two or three separate blog posts! A little secret - we haven't had a working computer in a couple years. We have an old netbook that we have to hook up to our TV to see anything on, and it gets overheated after five to ten minutes of just booting up most of the time-- needless to say I wasn't blogging from there! But about a year ago an incredible family in our world gifted us with a Kindle, which has been an absolute God-send not just for when I'm in the hospital, to stay connected and entertained, but also in parenting a two year old! ;)   And this week I was able to get a keyboard to go with it, which I'm so excited about! I cranked out three quarters of this post in no time! All that to say, you should be seeing more frequent but less lengthy posts from me in the future. SO many times throughout the week I think, "Ah, I should blog this!" usually as I'm learning something I'd love to get down in ink and share with you all. Now I'll be able to do that much more efficiently. Wahoo!



I hope I've informed, encouraged, spoken truth or life into your airspace today.
I'll close with this:

"This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live, and that you may love the Lord your God, listen to His voice, and hold fast to Him.
For the Lord is your life, and He will give you many years in the land."
-Deuteronomy 30:19-20

My two greatest treasures and me at MESH Conference this week. Nothing can keep us away from the House for long! I love my church!