Where to Begin? A Summary of Recent Events

I admittedly wait long periods of time between my posts recently, and the farther apart they are, the more overwhelming it is to try and sit down and write out the most current events. I thought that was just due to trying to remember what happened, the farther in the past it goes. Now I think it's also more about how time keeps moving, more things keep happening, the list of items to blog about and update grows longer and - recently - weightier.

My last post was about getting ready for "Plan B," an upgrade to my PTBD biliary drain - to do angioplasty of the bile ducts with a balloon and open up one of the main ones that has serious scar tissue narrowing. I had that procedure done at the beginning of April.

Here I am, ready to go... little did we know it would be about six more hours wait ;)

I came out of it with a French drain tube doubled in size. The doctor exchanged the 8 gauge drain tube I had to a 16 gauge. Wooey, the first look I got under that bandage made me grateful I'm not a wound care nurse, but much more capable, not as easily grossed-out people are in that profession! :)

I was in a groggy state for a day and a half afterward, but it was so good to be home!

That means it has been a whole month with this larger PTBD, and unfortunately, no changes. I tried capping the drain on two different occasions, following doctor instructions. It went well overall; right now it's capped. I was losing way too many electrolytes in the fluid output of the drain, so I had to. I'm still battling those low levels of magnesium and potassium, as well as working really hard (it's not easy, for some reason!) to keep drinking water and other wholesome beverages, and eat good meals. It's a bummer that there were no changes to my lab numbers after this larger drain; even when the drain bag was attached, my bilirubin was still up at 19. Yikes. And the jaundice has stayed the same, and itching has returned WORSE. Ah if I could pick pain or itching, I'd choose pain. Itching is slow torture!

As I mentioned, there haven't been significant or really even noteable changes, improvements, to my lab numbers. This is the reason for my next big piece of news...

I'm glad we got this news the week of Easter. It made everything easier. I cherish the Hope of and in the Resurrection.
Always - Only - Jesus.

I've been referred to the University for another liver transplant.

(:sigh:)


One of my liver doctors sent over the referral, and I'm just awaiting their call one of these days to set up all those crazy pre-transplant evaluation appointments. It's possibly going to be a busy summer... if only it will be full of things like swimming lessons and dance classes with my Victory bear, rather than doctor appointments and uncomfortable procedures?? I will keep hoping and believing.
It's something that's come up in conversation numerous times since about four years ago when my team started noticing that the PSC (primary sclerosing cholangitis) may have recurred. But it was never so definite or concrete as now.

This is a picture of the imaging from my second-to-last procedure, when the first drain was "installed." They got it in and were able to inject dye to illuminate the ducts (the darkened, tree root looking things).
There should be so many more, especially on the left...

That is one mass of sharp, irritating to my skin blue stitches. And one big drain! I flush it with saline like this once or twice a day.

Just for the record, heading into another twelve hour surgery is not what makes me take so many deep breaths, and need time to process these developments, and soak in the Word and worship to be fueled up for those inevitable Mind Monsters. It's not that that scares me. This time I would be heading into a transplant not as a light-hearted teenager, but as a wife and mom to a toddler. I want to be here for them. Always. And a waiting list of approximately, at all times, 17,000 people needing a new liver, versus only the 6,000 per year that receive one... well, do the math. (Source)
Of course this is a fear that I don't dive in too deep to, because my heart and that Holy Spirit voice thankfully always tug me back to earth and say, "but Emily, BUT GOD. This may look daunting, BUT GOD. He can do anything, and He wouldn't have brought you this far to leave you or let you be done living now."

So anyway, that's the biggest news I had. My days are so full of joy and memory making, it's not derailed me too much, just mostly made me live all the more intentionally to soak up the everyday moments. Hobby Lobby had this painted sign I wanted to get for my living room at one time (coincidentally, it's not there anymore). It said, "There is always always ALWAYS something to be thankful for." How true that is!

I had a glorious nap last week, later than usual, and woke up to a gorgeous sunset...

A couple Sundays ago, we took a short drive to the Peninsula and found a secret children's garden. Dreamy looking mature trees, and little fairy gardens someone's made. Miss V was on the hunt for Peter Rabbit :)

The Secret Garden

Momma and Miss V made it to Costco all by ourselves the other day! What a fun time and a big accomplishment :)

I experienced a huge glimmer of hopeful progress the other day. My eyes became more and more white throughout the day, and by evening they were whiter than they'd been since Christmas! Unfortunately back to very golden the next day, but that event sure was encouraging. Looking for more of those in days and weeks to come!

We always enjoy the beautiful garden at the clinic. What beautiful flowers and trees we get to appreciate because someone works very hard at planting and tending.

I've been marveling at God's grace and sustaining me to be able to keep up with Miss V around the house, and I'm on a baking roll this week as well! V and I made grain-free "puffy oven pancakes" on Monday, and I whipped up a batch of sugar cookie dough from a gluten free Hodgson Mills mix. We never got to make Christmas cookies.... or football/Superbowl cookies... Valentine cookies... or shamrock cookies... or Easter cookies. Despite me getting everything including the appropriate cookie cutters out on the counter, every time I've been too tired. Well we are going to make our Easter/spring cookies, no such thing as too late :)
Late last night I couldn't sleep and made coconut flour blueberry scones. (Yep we're still very much gluten free around here. We added back grains last year when I needed to put on weight desperately. Phasing them out again little by little, because all three of us do better without.)
Then today I made a rhubarb crisp, grain free, vegan, refined sugar free, with local rhubarb from a farm down the road. Delish! I have missed baking very much, and can't believe how much I've been able to do including cleaning up afterward, doing multiple loads of dishes and laundry each day, hanging with Miss V and watching a movie a day and doing crafts with her. Every day I have strength and energy to keep up and make life fun in my home, I am SO thrilled and grateful!

Speaking of energy levels and miracles...
Another hurdle I'm in process of jumping is some wonky blood and bleeding issues. My exhaustion level didn't fade enough once I capped my drain last week, and I had a hunch about not just electrolytes but also my blood counts. Sure enough, my doctor reported back to me that my Hemoglobin was at 8 and Hematocrit 26. My Prothrombin time and INR (both indicators of the time it takes for your blood to clot) are double what they should be. I actually had to wait a few hours while I was infused with three units of Plasma before my procedure earlier this month, because my numbers were past their cut off for a safe procedure.
It has to do with the challenges my liver is fighting through, and the state of sickness it is in; PT and INR rise. Not much you can do, I am now taking Vitamin K but really I just need healing! I'm really starting to feel it and noticing that it's not really improving.
Oh more blood drama! It's been almost a full year since my intense war against Autoimmune Thrombocytopenia ended and [I believe] God healed me and put that nasty disease into remission forever! But I'll never forget those trips to the ER hanging on as I was on the verge of passing out and my skin was so white and cold.
I got my blood drawn yesterday evening to check Hemoglobin, Hematocrit, and to do a Type and cross for a blood transfusion. It's inevitable that I'll need one within a week (actually, it's been a week since my labs were drawn last and my doctor informed me of the electrolyte and blood situation and my need for a transfusion.) but the Infusion Center where they do blood is so booked up, I can't get in until Monday. I do NOT want to end up in a critical situation ever again due to low red blood cells, so I figured checking today would be a good idea, we'll see where my numbers are at (knowing I'm still having bleeding issues - dumb gut ulcers!) and if needed, the team will go ahead and put me in the hospital for a short stay to receive a blood transfusion that way. I'd much rather give up a weekend day doing that then have to rush to the ER late Sunday night because the numbers got out of control.
Please say a prayer for clear results and a great plan of action. And as always, a blood match for me that's clean and healthy!

I think that is the summary of the major things going on. It's been a busy month - anyone else feel like April just FLEW by? But I am excited for May; it's my "happy month." :)
I will celebrate thirteen years since my liver transplant on Cinco de Mayo the 5th, my third Mother's Day on the 10th, and my 30th birthday at the end of the month! It's a good life. Never let go of your vision or your fight.

And don't take life or yourself too seriously! ;)

Right?? :)
Interesting to me, my hair is getting back to its curly, wavy state. It was like this before my liver transplant in high school, and changed to being mostly straight when I was pregnant with Miss V. Now, the curls returneth!

Here is a group of statements I wrote out to myself last week when things were feeling overwhelming, lonely and anxious. A declaration:

"I choose to live.
I choose to keep moving.
I choose to take one day at a time.
I choose to not quit.
I choose to trust Jesus.
I choose to believe the enduring, unfailing promises of God.
I choose to look high and low, far and wide, to find any joy I can find in the most difficult of days.
I choose to hope.
I choose to stay in the fight.
I choose to be fully present in the moments for myself, my daughter, and my husband.
I choose to thank God in every moment.
I choose life.
I choose joy."


And here is a beautiful prayer I discovered; I've heard and read parts of it before, but wanted to see it in its entirety. I want to print it out and carry it in my purse with me to remind me of these truths.

St Patrick's Breastplate

Christ be with me, Christ within me
Christ behind me, Christ before me
Christ beside me, Christ to win me
Christ to comfort me and restore me.
Christ beneath me, Christ above me
Christ in quiet, Christ in danger
Christ in hearts of all that love me
Christ in mouth of friend or stranger.

(390-461 A.D.)

Crazy Week, part two

I ended up being in the hospital for five days, I think. I got to go home finally on Saturday afternoon. The first 24 hours in the ER and CCU went by so fast, when I was trying to remember what happened there and how long it was, it was a blur. I'm sure that has to do with the whole "hemorrhagic shock" thing. Medscape says, "Hemorrhagic shock is a condition of reduced tissue perfusion, resulting in the inadequate delivery of oxygen and nutrients that are necessary for cellular function. Whenever cellular oxygen demand outweighs supply, both the cell and the organism are in a state of shock."

I really didn't take the CCU doctor very seriously, I thought she was overreacting calling it that, but once I was up walking around, and felt the complete muscle weakness in my quads and calves, I realized that my body really had to pull strength from somewhere to get through those intense hours. It was tough just walking down the hallway one time; my legs really lost their strength over night.
Once I was discharged and trying to get back to anything resembling normal life at home, that was a rude awakening! I realized, okay, my body really took a hit in those couple hours that my blood count got so low. How I got to that point, by the way, is the same thing that's been happening repeatedly in the past six months or so. An episode of bleeding that gets out of control, my body can't keep up with the blood loss, and things get ugly. (ITP / critically low platelets + Ulcerative Colitis / gut infection causing GI bleeding = no clotting happening = bad scenario)
So after all that, I realized the doctors weren't overreacting, they were really concerned, and took good care of me. This was the worst, most serious event we've had happen, and I am lucky to be here ... again ... always.

On Wednesday, I believe it was (my first full day out of the CCU), I had a great friend come to the hospital to visit me. A dose of friendly faces from the "outside world," bringing faith, smiles, genuine care and help to you when you're stuck in the hospital -especially when you have no clear timeline of getting out or solution to prevent this from happening again- that is such a gift! Thank you to my sweet friends and family for coming alongside Hubs and I through this, both this one event and throughout the past eight months. It's definitely been the hardest year of our life together since we've been married, and probably the hardest year for each of us individually in our lifetimes. The people who've stuck by us and trudged through this season with us - you are truly priceless!

Wednesday evening, just when I was starting to get concerned that I hadn't seen my hematologist and wondering if he would be coming by, because we had some things to discuss - he popped into my room like an instant answer to prayer! We had a great chat about putting some notes in my chart for any staff to be able to access, noting that we have a plan in place for when I have to come to the hospital, and basically saying to all the doctors just meeting me and seeing my lab numbers, "Do not freak out! This is normal for her and we have a plan!" It was funny to hear my doctor admit, "When I first met you and saw your numbers, I freaked out! But now I'm used to it." I have a great care team and I appreciate when we can laugh about things together :)

We also set up a plan to go by when I went home. It is basically, to go to the lab twice a week to monitor my CBC (red blood cells - hematocrit and hemoglobin, and platelets, being the most important numbers to watch), and call with any serious bleeding, and if a transfusion is needed, the nurse will triage me to either an outpatient infusion center, or an overnight direct admit to the hospital for fluids and blood if needed.
It felt really good to set up a plan, just because everything has been so unpredictable and crazy the past few months, at least we now have a set idea of what to do when symptoms come up. I realized I have to do a better job of facing the reality of a bad bleeding episode too, and go in for labs and let all of my doctors know, instead of hoping it will clear up on its own.

The rest of the week was mostly a LOT of blood draws, a few more units of blood transfused, magnesium IVs, IV steroids, and starting an antibiotic for aNOTHer infection I got from being in the hospital. Yuck! Thursday night (early morning) I got 90 minutes of sleep, the rest of the night I was awake and in serious pain and going back and forth to the bathroom far too many times than anyone should ever have to! Thankfully that improved slowly over the next few days, and though I could have gone home sooner if I had not had that infection come up, it was good to stay in the hospital until everything was calm and my counts were stable.

I sure miss my Victory when I'm in the hospital. Highlight of the week was definitely her visit!

While I was in the hospital, we also started talking more seriously about something that came up the last time I was there: surgery. Surgery to remove my colon. I'll blog about that next time.

For now I'll wrap this up. I have been to the clinic for three CBC tests since leaving the hospital, and each time my hematocrit and hemoglobin have been good, staying stable above 30! My platelets were 7,000, 8,000, and then most recently, 11,000, which is no where near normal (150,000-400,000) but it's great to see them stable and even increasing a bit.
My guts are staying mostly quiet, and no serious bleeding issues, Praise the Lord!
It has been a true gift to be able to be home with increasing energy and strength for more than one week. I have been able to do things I haven't done in months, maybe even all year! So many things go by the wayside when you're in survival mode, from regular cleaning chores around the house, to taking time to enjoy yourself with a hobby project or outing. And getting to be a hands-on mom again, after so many days and weeks of pain and weakness and needing help to even change diapers, has been the BEST!

So that's part two of my crazy week. Thankfully, since I've been home things have gone from crazy to calm, and are going well! Quiet and stable is much preferred to crazy and serious :)

Crazy Week, part one

Exactly seven days ago, I was spending the night in the Critical Care Unit. Tuesday morning my husband had to rush me to the Emergency Room, where they declared I was in hemorrhagic shock. My blood pressure was low, heart rate high, skin white, and body struggling. Hubs had to carry me to the car and into the ER wheelchair.

After arriving to the ER, they got me right in, and all available staff came to assess me, put in two IVs simultaneously, ran an EKG, and a tech stood by ready next to the code cart.
Here I am wrapped in blankets - I was so cold:

I was put into the CCU because they could not find a match blood donation to give me right away, and wanted to monitor my vital signs closely in the meantime. It ended up taking five or six hours for the blood to arrive. I received a platelet infusion while waiting for the blood, but it didn't boost my platelet level. (Same as the time in December when that was tried.) This darn ITP is a nasty thing.

You know what they don't have in the CCU rooms? Toilets. Bathrooms. In case you love to use a classy contraption called the bedside commode, it's the place for you!

God bless my husband for his nurseliness. The things he puts up with for me...

After my transfusion of two units, I had a little improvement. It was slight, just sitting up successfully and better vitals, but progress. Hubs said my skin also had some color back to it.

The next morning, my doctors explained the plan was to transition me to a medical surgical floor. We waited most of the day for that, and in the meantime I was able to start walking around. The hospital has a rooftop garden for patients right down the CCU hall, so we went out there to enjoy the sun.

What a testimony to the power of prayer! I looked so much better and felt better then. I stayed outside almost an hour sitting and drinking water and sun basking. Then we went in, ate lunch, and it was time to go upstairs.

My room was on the top floor of the hospital, possibly the best room and view in the whole place! It also happened to be on the floor where a friend of mine is a nurse! I felt like God gave us favor with those circumstances, they were not a coincidence but Him, showing us He was near even in those little things.

The view from my hospital window:

I got settled in, the hospital doctors came to see me, I got to eat dinner, and then it was night. They started me on high doses of IV methylprednisone, and checked my blood count again.

To be continued...

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!

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."