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.

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2 Comments

  1. Joel, I love your thoughts and your faith in the Great Physician!

  2. Hi, I have never met you or Joel but also attend Central. I have been keeping Joel in prayer that a diagnosis would finally be made, so he can be treated and start feeling better. So praise God that it looks like that a diagnosis is at hand!


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