Weekly Health Update

It's that time again; time to check in and let everyone in on the latest step of our health saga. 

If you remember I had an MRCP scheduled for last Friday morning to check on what was going on inside. An MRCP is like an MRI, but it focuses on the abdomen. Since I couldn't eat beforehand I scheduled it as early as I possibly could and was at the hospital by 7:15am. That is the time to go to the hospital-the place was practically empty! No one had had time to break any bones or come down with any bizarre ailments. 

After a few minutes of waiting (just enough time to read the newspaper uninterrupted) they whisked me back for the procedure. They strapped me in and gave me a very nice pair of Bose headphones to listen to satellite radio and we were off! I chose not to let myself think about the tiny space or being trapped, and to be honest, it really wasn't so bad! I'm not saying I want to sign up to do it every day, but it could have been a heck of a lot worse. The hardest part was when he asked me to hold my breath for a while for one of the pictures. The entire procedure was pretty painless and quick!

I was even more surprised when the GI doctor's nurse called me later that afternoon with some of the results. She said that things looked "okay"-not great, but not terrible either. It didn't seem like it was a problem with my liver-wahoooooooo! The results showed that my bile duct was constricted, which is a sign of a recently passed gallstone. If you remember correctly, they were also able to tell this from the ultrasound in the ER. They didn't see any other gallstones, though. 

So, what does all of this mean? Good question. I have an appointment later this week with the GI doctor to talk more about these results and the next steps. I've heard of a lot of people who've had their gallbladders out and had all their similar issues disappear. We shall see what the doctor has to say!

I finally started the cytotoxan (medicine for my kidneys) last week. The first day I had a dreadful headache, but I don't know if it was the medicine or the changing weather. I've also noticed that I don't have as much of an appetite for the first few hours after I take it, but it's usually back by the afternoon. If that's all the trouble I'm going to have, I'll take it!

Are We Weird??

I'm beginning to wonder if we're the "weird" ones everyone else talks about. I mean there are a lot of reasons people may think that (yes, I realize it's not normal to want to go to bed by 9pm every night), but in particular I'm wondering about lifestyle and healthy living.

Last December we decided to complete a round of Whole30 in the new year, but as we were looking into it we realized a lot of what we do already aligns with that. We rarely eat/drink dairy, bread shows up in our house for guests, and I haven't bought soda in years. We both like to workout at least five times a week and have been known to get cranky if we can't. Which leads me to my question again, 

Are we weird??

I can't tell you how many looks we get when we tell guests we only have water or almond milk to drink. Our Community Group laughs at us all the time because we always have the same boring drinks that no one wants! Haha. When we're planning our days we always make sure to fit a workout in, even if we're on vacation. It just helps us feel better! And since we've completed Whole30 we are much more aware of the foods we eat. Now, don't get me wrong, I still have a major sweet tooth, but I'm looking more at labels for the ingredients than the calories these days.

So, what's the verdict, folks-are we weird??

Health Check Point

Happy Tuesday one and all! It's been almost a week since I've caught y'all up on the health happenings, so I thought I would go ahead and post. 

So, last week I had an appointment the GI doctor to see what exactly was going on with all these "stomach bugs". I mentioned that I had hoped it was gallstones as that is a pretty easy fix. Due to my family's history of wacky medical disorders and my previous kidney issues the doctor didn't want to assume it was that just yet. He ordered some lab work and an MRCP (similar to an MRI) to see what exactly was going on. I still haven't heard back about the lab work (which I'm taking as a good sign!) and the MRCP is scheduled for later this week. Pending the results of all of that he may order a liver biopsy, but we're praying it doesn't come to that!

All of that means I'm pretty much in the same boat I was in last week. What about the other medicine I was supposed to take for my kidneys? It still has not come in yet! If any of y'all ever have to use this mail-order pharmacy, my deepest condolences. They have promised it would arrive multiple times and it still hasn't. I called them again yesterday to get a status update (since it was two days late from their most recent promised delivery date) and was told the order was put on hold and it was a good thing I called to release it. Seriously??? What would they have done if I hadn't called to check on it?? Good thing this isn't a life or death situation! Argh! The next promised delivery date is Wednesday but I'm not holding my breath on that one. . . 

Hopefully the next time I post I will have an update of happy news and happy lab results!

What a Wonderful Weekend

Have I mentioned how amazing the weather has been?? We did have a few days of ick in between the gorgeous, but I think it helped us appreciate the beauty even more!

This weekend my sister, Abby, and her boyfriend, Mark, joined us for a quick visit. Since our brother, Harrison, and his wife, Ashley, live so close we were able to coordinate schedules and make time to hang out pretty much all weekend. Having family close by is such a treasure! We kicked Friday night off with a few rounds of Dominoes, because we can't get together and not play Dominoes. It just doesn't work like that. Harrison and Abby are definitely my blood because they were both ready to toss in the towel and head to bed around the same time I was-9:30ish. Everyone lovesssssss to make fun of the Ward kids for going to bed early but we're all going to outlive all of y'all because of how well-rested we are ;-)

Saturday brought beautiful weather and a chance to show off a fun part of the city to Abby and Mark. We packed up the babe and headed down to NoDa for a few drinks and lunch. We started at NoDa Brewing and were lucky enough that Harrison and Ashley were able to grab a table in the sun. Craft beer, food truck food, family, and incredible weather-it was perfection.

Soaking up the sunshine

Love him more and more

My heart is so full.

I love my people.

After an hour or so there we headed across the way to Birdsong Brewing for a few more drinks. The sun was warming up so we were able to grab a table under the covering and hunker down for a while.  Soon thereafter little miss let us know that she was reaching her limit so we headed back to the house to grill out and watch basketball. Speaking of basketball, anyone else see that NC State game?? Whoooooooo! GO PACK! 

Wearing our matching NC State dresses to church to celebrate the win!

Sunday wrapped up with the morning at church and catching up around the house. Pretty much perfection. I hope your weekend was just as wonderful!

Spring Fun and Health Updates

I just wanted to take a quick moment and check in with everyone since my last update. I am happy to report I've felt GREAT since getting the fluids and anti-nausea meds in my system-I didn't realize how dehydrated I really was! Since my last post we have been enjoying every moment of this gorgeous Spring weather trying to soak it all in. A few pictures for proof. . .

Loving her first time in a swing! 

This poor baby has been blessed/cursed by super fair skin and will forever need a hat!

Hey, ma, who's that baby??

As you can see we've been spending a lot of time outside:-)

I was fortunate enough to get an appointment with a GI doctor for today and will hopefully receive some more answers there. The more I learn the more I think it was something with my gallbladder, but who really knows. I've had a few questions about how my new medication is affecting all this and the answers is-I have no clue. I actually haven't started it yet. Due to some miscommunication with the local pharmacy and some ball-dropping by the mail-order pharmacy it still has not arrived. Normally this would have aggravated the mess out of me, but I'm seeing this as a blessing instead. Had I been on that too who knows how my body would have responded! 

Many thanks for the continued prayers and support!

Well, That Was Unexpected

There's not much to say about our Sunday except, 

Well, that was unexpected

I should really back up to Thursday when all the "fun" started. Thursday morning I woke up to work out and had a funny in my tummy. Not too long after I decided working out was soooooo not happening I was running for the bathroom. And so began another epic stomach bug. That's right, I said another. That's because this is the fourth time I've been sick since December. And it's not just some 24 hour in and out and on with your life. No, we're talking a week to a week and a half of racing to the bathroom soon after I eat anything. This time around I lost 8 pounds in 8 days. Yea, not good. 

Anywho, it all began on Thursday and came and went and then came back and went. Just as I thought I was starting to feel better it would return with vengeance; just like the other three times I've had it. It was miserable. I started feeling "better", or at least like I could function, Saturday evening. I must have spoken too soon because early Sunday morning around 1:30am I woke up with dreadful chest pain. It was so excruciating I thought I was having a heart attack. In fact, come check my computer's history and you'll see that I was Googling the symptoms! After a few hours of writhing around in pain I finally took a baby aspirin and was able to settle down enough to get another hour of sleep before the babe started making noises.

When I officially woke up for the day I knew I wasn't in the clear yet. The pain seemed to have migrated down to the space between the top of my rib cage. After consulting with the mama (and the family nurse) we decided it would probably be good to head to Urgent Care. The WONDERFUL people at Urgent Care were quick to tell us there wasn't much they could do and sent us on our way to the Emergency Room. Have you ever been to the ER? It's not a quick trip. David and I both came prepared with reading material and settled in. 

After about an hour of waiting in the waiting room they put us in a room where we waiting another hour before we saw the Nurse Practitioner (NP). She ordered some labs and an ultrasound of my gallbladder before making any predictions. Cue more waiting. The ultrasound showed that my gallbladder looked normal other than some tube was constricted which she thinks means I recently passed a gallstone (perhaps that's why I was absolutely MISERABLE the night before!!). My lab work did show elevated liver enzymes. To jog your memory my sister and aunt both have autoimmune liver disorders and my mom has recently had some screwy liver numbers in her lab work. So, while hearing it was my liver wasn't good news, it also wasn't entirely surprising either.

According to the GI doctors on-call, with my history of kidney issues and my family's history of issues this could mean autoimmune hepatitis. Could. The NP wanted us to stay the night at the hospital, but said that nothing would be done until the next morning any way. After being away from our sweet girl all day and hearing we would be staying at the hospital only to get in early the next day, we decided to head home.

So, what now? I'll be calling the GI office today to hopefully get an appointment with their doctors to find out what's really going on and the next steps. Until then we continue to ask for prayer as all of this comes on top of my recent kidney issues. I know that God is with us every step of the way and is using this experience to work in us and mold us for the future and with that knowledge there truly is nothing to fear!

Trusting

I have recently joined an amazing organization called Bible Study Fellowship that meets weekly to study God's word. "Oh, okay, so she joined a Bible study". Not so much. I joined an incredible international organization that meets weekly at different locations across the globe to study the same message. We are split into smaller groups for discussion of the week's passage and questions before we return together for the lecture. This year we are studying the story of Moses and the Israelites and it has rocked my world in the best way possible.

We continue to hear about the Israelites' lack of trust in God and their failure to obey Him. They continued to try to take matters into their own hands despite God's instructions to trust Him. And then when He did provide for them, they spent a lot of time grumbling about it. 

Talk about a smack in the face.

Here I am grumbling and feeling sorry for myself for having to take some new, harsher medications when I should be thankful they even exist for me to take! God has shown me through various people and different conversations that this is the best path for me, so why is it still so hard to trust Him? 

Trust in the Lord with all your heart and lean not on your own understanding.

-Proverbs 3:5

That verse has always resonated with me. It came to me in my first year of teaching (though I'm sure I'd seen it before) and it never quite left. Every morning I prayed that and even had it posted as a reminder on my desk. In the almost five years since I started praying over that verse daily it has gotten me through some very hard times, and I know it will continue to do so. 

Trusting God is such a freeing feeling. With it comes a weight lifted and a heart lightened. Burdens are no longer so hard to bear and the waves don't seem to crash as hard. Instead of allowing myself to worry I am trusting in Him with all my heart and letting Him guide my every step.

An Update to the Update

Time for an update to last week's kidney update. 

When I posted last week we were heading to the nephrologist hoping for some more answers about what the heck is going on with my body. Unfortunately, my kidneys can't talk so we still don't know exactly what they're doing, but we do have a new plan of action. 

My doctor's biggest concern is that I am becoming dependent on the steroids and they are no longer working. For those of you who have been on steroids for any amount of time, you know they can do some cuckoo things to your body in both the short and long term. I've been on and off them for almost four years and in that time they've wrecked havoc on me. The side effects have not been nearly as bad as some others have seen, but they haven't been entirely pleasant either. So, the first thing we're doing is beginning to taper the steroids in hopes of weaning me off them entirely in the next few months. Praise! But the weaning process comes with a price-another medication.

Starting this week I will begin taking a medication called cytotoxan. The hope is that I will take this very powerful chemotherapy drug for a short amount of time (8-12 weeks) and that will help prevent my kidneys from relapsing again. And yes, you read that correctly, it is a chemo drug.   There is another drug option but that one would take at least a year which means at least a year of continued steroids as well. 

There are obviously a lot of side effects that come with this but when we spoke with my doctor, and spent time in prayer, we decided this was the best course of action. What's hardest for me to wrap my brain around right now is that I'm going to have to stop breastfeeding Amelia Grace as the medicine could possibly be passed to her through the milk. 

We continue to ask for prayer for this transition both physically, mentally, and emotionally. We fully believe that God is working in me and in this situation and are hopeful to see how it all works out!

Kidney Update

Last time I posted about my kidneys my levels were all out of whack and they were increasing my daily prednisone dosage. We were just playing a waiting game of labs and levels. It was not a game I enjoyed playing and I wasn't really winning. Unfortunately, I'm still not winning.

A few weeks ago I completely a 24-hour urine test to see how things were going. The results did not really show in my favor which led to a phone call from my nephrologist. Usually the nurse calls with results, so when the doctor called I knew things were not good. The results continue to show protein in the urine, but normal kidney function. Confusing? Yea, it doesn't make much sense to me either. 

So, what's next? Clearly the prednisone isn't working. My doctor is wondering if another medication (often used to treat transplant and chemo patients) would be better suited for what's going on. She's also wondering if instead of minimal change disease I actually have another condition called Focal Segmental Glomerulo Sclerosis, or FSGS. If a patient has FSGS there is scarring on the part of the kidney that filters blood. The only way to tell for sure would be to do another kidney biopsy (which no one wants to do) and even then we couldn't be positive. In order to diagnose FSGS you have to have the perfect kidney specimen and that cannot be guaranteed in a biopsy. 

I have an appointment this coming Friday to talk with my doctor about the next steps. I continue to ask for prayer as this is a much scarier diagnosis than minimal change disease. The treatment method for those who do not respond well to drugs can often be dialysis and a possible transplant. We trust God and His plan through all this, but are fervently praying for healing!

February Snow Days

Y'all, there is a reason I live in North Carolina and one of those reasons is the early onset of Spring and very little snow we usually get. Welp, Mother Nature must be cracking up at my complaints because she is keeping the cold coming! Two weeks ago we had our first icy/snow snap that kept the kiddos out of school and the rest of us locked up in our houses trying to stay warm. Then, last week we were hit again, but this time it was more snow than ice making it more fun to play in (not that we did much playing since it was still too cold for little miss!).

What we went to bed with 

What we woke up to-a solid 3 inches! 

Snuggled up with baby girl!

In true North Carolina fashion the kids were out of school much longer than necessary and the weather was a balmy 50 the next day. We were all so hopeful that was the end of it until David broke the news to me of the possibility of more ick later this week. Seriously??? We're going stir crazy around here! We're ready to return to our daily walks and our evenings spent on the patio watching the cows! 

If you need me or Amelia Grace we'll be packing our bags and heading south for the rest of the winter. She mentioned how much fun it would be to see the clear waters of the Bahamas;-)

7 Month Update

Happy 7 months, little love!

Loves playing with those feetsies! 

All smiles holding her doll baby's hand

Here, let me give you a love tap. . . 

Ooo this sticker thing is fun 

Daisy, you want one too? I'll share mine!

Height/Weight: Who knows at this point-haha. I had been trying to weigh her on our scale at home, but it always seems so off. We do know she lost a smidge when she was sick, but she has definitely gained it back. I'd say she is somewhere in the 17-18 lb range?

Clothes: Sticking in the 9 month clothes range these days. Some 6-9 stuff still, but it's a squeeze. She is wearing a few 12 month onesies just for the length. 

Likes: Still loves Daisy and Daddy. She also loves eating any and all types of food! We've also noticed she loves music of any type. As soon as she hears she starts to wave her arms up and down.

Dislikes: We're very blessed that overall she continues to be a pretty happy baby. The nighttime transition from bath to pajamas is a rough time every night-I'm hoping this ends before she's 18;-) 

Milestones: She is rolling every which direction. It cracks me up to lay her down and then come back a few minutes later to see her a few feet away! She also is sitting up completely on her own. I'm loving this stage of her sitting up by herself and being able to play!

Fun Fact-She doesn't really have  a7 month "birthday" because she was born on the 29th and there are only 28 days in February. Nifty, huh?