Tuesday, March 19, 2013

My Husband Has an Old Man's Pill Box

You know the kind.  It has a spot for every day of the week, and you fill it with all the pills you have to take every day, so you don't forget to take them, or mix them up, since that could be catastrophic.  The only reason you need a pill box is if you're taking a lot of medication, and right now Chad jokes that our kitchen cabinet, the one with all the glasses, also looks like the medicine cabinet of a 75 year old.  He needs the pill box.

So about a week ago, I posted on Facebook about Chad's recent trip to the hospital, and quickly realized a lot of people have no idea what is going on with his health.  Which led me to remember I have never documented any of what's going on here, and since this is our family journal, that's kind of unacceptable.  We may want to remember all of this someday.

This story starts a long time ago, when Chad was an eighteen year old kid, getting ready to serve a two year mission for our church.  He went in for a physical, had some blood drawn, and was told that his liver enzymes were higher than normal.  This is not something you see everyday in a teenage kid, so the doctor did some more checking.  He didn't have hepatitis.  He'd never touched alcohol.  It didn't make sense, but he had no symptoms, so the doctor just recommended he continue to monitor the situation.

And he's done that for the last 12 years.

Since we were married in July of 2005, we've taken it a little more seriously.  He had ultrasounds to look at his liver, blood work once a year, etc.  Always with the same results:  You have high liver enzymes, but we don't know why.  Maybe you have hepatitis?  Nope.  Do you drink?  No.  You can be honest, I know you're Mormon, but I'm a doctor, and this is confidential.  Nope.  Five years later, after we had Kaden and started to realize we needed things like life insurance, we got even more serious about it.  No one could tell us what was wrong.  Not the doctor he saw while we lived in Utah during our college years, nor the doctor he saw after we moved to North Carolina after graduation.  It was like this unknown thing that wasn't normal, but wasn't affecting Chad's quality of life, so it was hard not to give it an "out of sight, out of mind" status.  

After we moved to Raleigh last February, Chad found a new doctor and went in for his yearly physical.  This doctor was curious and insisted Chad go see a specialist.  Chad saw the specialist who said, "This isn't normal, and you're not leaving my care until we figure out what is wrong."  I will love these two men forever, because they pretty much saved my husband's life.

Anyway, a long story short--they ran all kinds of tests.  Chad had a MRI.  His liver had some extreme scarring, but luckily it hadn't reached cirrhosis and failure.  He didn't need a transplant yet, and the doctor was confident that if they could figure out what was wrong and stop further scarring, his liver could make it.  At this point, we felt extremely blessed. The doctor said that with Chad's enzyme levels where they were, coupled with this having been a problem for at least 12 years, it was shocking that things weren't worse.  Most patients with issues like Chad's are already experiencing liver failure by the time they see him, because they have no symptoms until that point.  Immediately Chad was started on an extremely high dose (60mg) of prednisone, a drug with all kinds of nasty side effects.  He also started having his blood drawn every week to monitor his liver enzymes more regularly.  The doctor had some ideas of what  could be wrong, but needed Chad to have a liver biopsy to confirm things.  So, in November, Chad donned a hospital gown and a doctor used a giant needle to extract a chunk of his liver for analysis.

The doctor was pretty sure he had auto-immune hepatitis.  Basically, his body thinks he has hepatitis, even though he doesn't, and his immune cells are attacking his liver.  His enzymes weren't dropping with the prednisone, though, in fact they went up.  So, the doctor added another drug to the concoction--Imuran, an immune-system suppressant, one usually reserved for cancer patients and those who have undergone organ transplants.  When this still didn't get the needed results, Chad started taking ursodiol in addition to his other two meds.  His levels came down into a range that was close to normal, and we were elated.

The doctor was still worried, however, because there was a chance that Chad had a different disorder, one that ursodiol could actually perpetuate in the long-term.  So, a week ago, Chad went under anesthesia and had a laparoscopic ultrasound.  They were trying to get a better look at his bile duct.  Everything looked great, and they could rule out the potential different diagnosis.  He could stay on the drug that was working.

At this point, he is still taking all three medications and a fat-soluble vitamin to help his body absorb the ursidiol every day.  They are continuing to lower his prednisone dosage, and he's already lost almost ten pounds because of that (prednisone gives you an insatiable appetite, and makes you retain water).  We are hoping that eventually he will be able to get off the prednisone all together.  Every time his lab work looks good, we cheer.  We don't know how much longer this will last.  He may have to be on medication for the rest of his life.  His condition may stabilize, which would mean he can just have routine blood work and take medication when things "flare up," which is what we are hoping for.  He will be on these meds for at least a few years at the very least.

I was explaining all of this to a friend who commented, "You are talking about this so calmly!  I would be freaking out!"

I can talk about it calmly.  Now.

But I have done plenty of freaking out.

Like when I spent an entire day sporadically crying, and Kaden would say, "Oh, it will be OK, Mommy," and give me a huge hug.  Yes, my two year old had to be the voice of reason.

And sometimes I still do freak out.  Like when I cried on the phone with the billing person at the hospital.

Do we have insurance?  Yes.  Do I recognize that this is a blessing?  Of course I do.

But we still have to meet two of Chad's individual deductibles (two of his procedures were done last year and one this year--such poor financial planning on the doctor's part) and the percentage of the bill that the insurance won't pick up after that.  We have to pay the anesthesiologist.  The radiologist.  And for his prescriptions.  Oh, and lest I forget, we recently bought a house.  And spent money fixing it up.  And OH, MY STARS! Did I mention I'm having A BABY this year?!  Which I am dropping a couple hundred dollars a month for from now until July, and then the big kahuna bill will arrive in a neatly-packaged envelope from the hospital sometime soon after.

So sometimes, in the midst of extreme gratitude that we are getting closer to a solution to this medical mystery, I occasionally have a momentary lapse and wonder how in the blue blazes we're going to pay for all of this.

And then I look at my bathroom mirror, where my motto for the year is posted in my own handwriting: "Be still and know that I am God."   

And I try to be still.

Some days I do better than others.  

Here are some of the lessons I've learned in the moments I've succeeded:

--The Lord is in the details of our lives.  It is not a coincidence that we moved to Raleigh when we did, that a co-worker suggested Chad see the doctor that he did.  Those are examples of divine intervention on our behalf.

--"It will all work out in the end.  If it hasn't worked out, it isn't the end."

--I am so thankful for the power and blessing of prayer.

--There is nothing scarier than watching someone you love go through something difficult, but I will say it makes you remember even more how much they mean to you.

--You never know what someone is going through, no matter what things look like from the outside.  Be kinder than necessary, and choose your words carefully.

--In every situation, we have a choice how to react.  We can choose to be positive or negative.  We can see blessings or curses.

--It is while we're in the midst of trials that we grow the most.

--Have gratitude.  Be grateful.  Be appreciative.  Be thankful.  

Monday, March 04, 2013


I think I'm going to put this anonymous note in our neighbor's mailbox this week:

Dear Dad at the End of Our Street,

Almost every time I pass your house in the evening you are playing outside with your kids.  Shooting some hoops, playing street hockey, or doing yard work while they play near by.  It warms my heart.  My husband and I think you are incredibly awesome.  If there were more dads like you in the world, the world would be a better place.  Thanks for the example you set for everyone in our neighborhood.  Thanks for being the kind of father every kid deserves.

Your Neighbor

During the five years I taught high school English, I met a lot of kids with great fathers.  I met a lot of kids with not so great fathers.  I met a lot of kids who didn't know who their father was.  I met some kids who knew who their father was, but wished they didn't.

I remember a tearful encounter with one sophomore boy who had gone from an energetic, focused hard worker to a lackadaisical, cynical body taking up space in a row of my classroom.  I kept him after class, questioning his behavior and telling him how much I missed the "old him."  He opened up to me, revealing that his father had recently gotten out of prison, and my fifteen year old student had hoped he would be able to develop a relationship with this man he did not know.  Sadly, his father had chosen to return to the same lifestyle that had landed him in prison to begin with--associating with the same friends and participating in the same kinds of activities that would likely land him in jail yet again.  He didn't have time for his 15 year old son.  My heart broke for this lanky sophomore boy who I had come to love in the few months I had been his teacher.  The tears shed that day were not just by him.

I grew up with an exceptional father and had a lot of exceptional pseudo-fathers around me:  uncles, friends, and other family.  When I became a teacher, I quickly realized I'd led a pretty sheltered existence.  I suddenly realized that my life experience wasn't the norm.  

How important is the role of a father?  Of a man?  In our world today, I'd say more important than ever.

The more I think about this little baby boy growing inside of me, the more grateful I become that we're having another little boy who will grow up with an amazing daddy.  I am so thankful that my sons will be raised by a father who loves them and takes the time to be their dad.  To teach them how to be gentlemen in a world that is sometimes crass and unrefined.  To teach them to honor women and treat them with respect.  The world needs more good men, and I want my sons to be some of them.

I think there's a whole generation to follow that will be pretty thankful for that, too.

I'm so thankful for the chance I have to help shape their world as their mommy.  To be their teacher and their friend every day.

Alien-esque baby, sucking his thumb at 18 weeks and 2 days:

Kaden, on our recent outing to Pullen Park:

Suddenly, the boat seemed scary:

And scarier, as it was further away from Mommy:

 Happily removed from the ride early:

I pray every night that we can be the kind of parents who will guide our children to become strong men.
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