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.  


  1. I am so glad they have started to figure things out! I kept reading this thinking, "They need Dr. House!" I maybe need to watch less late night tv.... Thank you for the reminder of the little blessing in our life.

    Also, remember every hospital bill is negotiable. Being on private insurance, I spend A LOT of time on the phone with insurance and with doctors offices. If it is something not covered, there is almost always a cash price and at the very least there are ways to avoid the one big chunk. Don't be afraid to ask!

  2. Beautifully written Katie. I'm sorry your family is going through something scary with out a whole lot of answers. Your little inspirational quotes are amazing... and you're right, if it hasn't worked out, then it isn't the end. :)

  3. It's amazing how in the little details you really can see God's hand! What a blessing. I'm so glad you guys are starting to get some answers and hope that they continue coming and that his health will improve. You are so strong!

  4. Your post left me in tears. My heart goes out to you guys. It brought to mind something I try to tell my kids quite often: "Life is hard, but you can do hard things". I admire your faith and wish you the best as you weather this storm.

  5. Oh Katie, this sounds hard. I know how draining it can be to have a constant nagging worry that the guy you married isn't doing well. I'm so glad you have good doctors who actually care about you and who are finding things that work. And I love all your quotes! When I think back to my time as the wife of a sick guy, I mostly remember country songs that kept me going. I think the fact that you have something a little more substantial as your motto speaks well to your maturity :). And thanks for writing this. You will look back and treasure your accounts from the midst of crisis. I always wish I had written more.

  6. Oh girl. wow. I'm glad you guys were persistent.
    You guys can do this. You are one of the happiest and most optimistic people I know, and I'm not referring to this post.
    Love you!

  7. Oh my goodness. Thanks for the update. I love the lessons that you shared that you have learned.

  8. I love that you've been able to have such a positive attitude. You and your little family will definitely be in our prayers. And you're right that it's amazing to look and see God's hand and blessings in life. I can totally relate to you on the stressful insurance baby stuff.

  9. My sister has a cabinet/drawer full of pills, and has the lovely old-person pill box (sometimes she had to get the really big one to fit all the pills she needed to take at morning noon and night). She has an autoimmune disease also. I recognized all the pills you mentioned. It's crazy. It's hard. But she wasn't alone. And neither is Chad. And neither are you. Love you Katie =)

  10. I'm so glad things are working out for your family! And I'm going to share with you a little secret--when something comes up that I can't afford, I say out loud, "Well, it's a good thing we're rich!" This does a couple of things--it helps me keep my faith that Heavenly Father will help us out if we're doing the best we can. It keeps me from having to breathe in a paper sack. And it helps me to say in my prayers, "Thank you for helping me pay for this." And somehow, it gets paid for. Either from an unexpected bonus, or someone decides to throw a Scentsy party, or whatever. I think that positive thinking, and putting it out there, really helps the mental thing and the faith thing.

  11. I didn't know you had a blog either!!! I'm so happy we've found each other on the blogosphere. Also, thank you for this post! That scripture means so much to me and has gotten me through many a hard time. Thank you for your beautiful testimony, and I hope all goes well for your hubby! Medical bills and health insurance are the WORST!!!!


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