Ho Ho Ho! Merry Christmas!

Merry Christmas everyone! Isn’t time flying? Malachi asks us every day, “How many more days until Christmas?” It’s painfully slow for him, but super fast for Mom and Dad.

Some of you asked the latest on Joel and I think I didn’t post an update on Facebook but not here. Sorry about that! So Joel’s latest preliminary diagnosis is autoimmune hepatitis. This is not an infectious disease like hepatitis A, B, or C. It’s an autoimmune disorder. So for Joel, his immune system attacks the good and bad cells in his body. I noticed in last post, he said I asked him about having a “self-induced” liver disease. I did not use those words and that makes it sound like he did something to cause it. He did not. I think what he meant was that his body attacks itself. It is not curable, but treatable. It is genetic and rare. Treatment will slow the progression down, but the disease may eventually lead to cirrhosis or a liver transplant.

Joel is responding well to the medicine and we both feel this is the right answer. However, we’ll know for sure in three weeks when we visit the doctor and see his latest bloodwork results. The treatment he’s on is an anti-organ transplant rejection medicine. He’s been on it before but was taking the steroids at the same time so we couldn’t tell which one was doing what. The reason we believe it is working is because Joel does not have daily fevers while taking this medicine and his liver enzyme levels improve while on it.

The problem is that this medicine suppresses his immune system (therefore the immune system does not attack his liver which is good), but then he picks every infectious disease that comes near him up. So it wasn’t long after he got back on the medicine that he got a sinus infection. We know a guy who has similar issues to Joel and the way he combats this is with a daily anti-biotic. I asked the doctor about it, but Joel is allergic the anti-biotic that guy takes. So next time we’re at the doctor, I’m going to ask about a different one.

The other issue is that with not being on the steroids, his hands and feet swell and he has a lot of joint pain everywhere due to inflammation caused by the hepatitis. And he can’t be on a very strong pain medication because he watches the boys during the day and they don’t want anything masking his symptoms. We have vowed to never go on the steroids again. They cause too much damage.

Also, even though he is extremely fatigued, it is hard for him to sleep with the pain. He also has a rash on many parts of his body. It doesn’t typically hurt him, but right now he has one on his eyelids and he says that one does hurt. Overall though, Joel’s days go up and down. If he is having a good one, he can do one thing that day. And if it’s bad, he can’t do anything. Today was a bad day. So we hope and pray tomorrow will be better. To me, they kind of go in sets. He’ll have a few good days and then a few bad ones and so forth.

I can tell you though a few things we have learned.

  1. God provides abundantly. The second I start to worry, something happens and God blesses us. Most of the time it’s from people like you who are reading this. I don’t even have to be patient for this blessing. It often comes early! Although I’ll admit I’m still rather impatient on the healing part of things.
  2. Hold things loosely. In our house, plans change. Having “stuff” isn’t important. The things that are precious are time and health. Whether you’re sick or not, live like you’re dying (sorry for the cliché but it’s true).
  3. My husband is a warrior! He fights and he fights and he fights some more. He spends time with the boys and me even when he feels horrible. He does things for me even when I don’t deserve it. And even though he hasn’t felt well enough to ride his bike in weeks, every night he sets his alarm and clothes out for a morning ride just in the hopes that by some chance he’ll feel well enough to ride. His perseverance always amazes me.

We will update you with any new information when we have it. Until then, have a wonderful Christmas! Take time for extra hugs for friends and families! We love you all!

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Maybe This Is It?

I had a visit with my rheumatologist last week. This was the one where we were hoping to hear that the biopsy results from the sinus surgery would reveal big things. Well, they didn’t. Kayla and I talked as we drove across town to the doctor’s office about what next steps we would take if the doctor said there was nothing more he could do for us. To our great surprise and pleasure, in spite of the negative pathology results, the doctor ordered a lot of tests (they took ten tubes of blood) and retests. He said this was his first time to test me while not on any medication, since when we came to him in January I had already seen another rheumatologist and had one hospital stay, and he was hoping for results different from what we had seen for the past year.

What was revealed was that many of the tests that had been run before came back the same, however, my liver enzymes had become elevated again. When we first went to this doctor in January, he asked why I had come to see him. I told him I had been told I have lupus and was there for long-term treatment. He said he wasn’t completely convinced of the lupus diagnosis and suspected autoimmune hepatitis instead. His opinion was based on the fact that I had elevated liver enzymes since all this began last July. Now that I’m off the meds, tested again with elevated liver enzymes, and had a reduction in symptoms while on immunosuppressant, and had a liver biopsy that showed inflammation markers even while on medication, the doctor has arrived back at his initial hypothesis regarding autoimmune hepatitis. He instructed me to go back on some of the medication I had been on previously (not the steroids, thankfully) and to have a blood draw in another six weeks. He said that the missing component is the clinical one; essentially, that if my liver enzyme levels have normalized, my temperature stops spiking each day and I start feeling generally better, that would be conclusive evidence to diagnose autoimmune hepatitis. PLEASE NOTE,  this is NOT YET an official diagnosis.

Kayla asked me the next day how I was dealing with the idea of having a chronic “self-induced” liver disease. I told her I still feel the same right now and to ask me again in a month or more after the immunosuppressant have had a chance to take effect. The reality of the matter is that while this disease does have some very dire outcomes in some cases, God has known about this forever. One man putting a name to what has been making me sick allows for a clearer course of treatment, but God is the Great Physician and knows better how to take care of me and my body. We remain confident that I will regain the quality of life I once enjoyed and that God will continue to bless us and others through this ordeal.

Thank you all who continue to pray for us on a daily basis and to those of you who have helped support us in the last year, especially. The Wimp or Warrior ride and Jacksons for Joel and only two of the many, many ways we have seen God’s blessings in the last 18 months. Thank you.