Time.
Hello friends,
Last week, I had a follow-up with my neurologist. I wasn’t expecting it, but she had a serious talk with me and my mom… She told me that my mitochondrial disease is progressing, and because there’s no cure and no good treatments (except antioxidants, symptom management, etc.), she said there’s not much we can do except “keep me comfortable.” I know I’ve been getting worse medically….I wasn’t this bad 2 years ago.
But to hear my doctor tell me this was really hard, and I’m still processing all of what she said. No 24 year old should have to hear their doctor tell you this.
She explained how our bodies “replicate” more and more mitochondria in order to continue living, but because of my bad mtDNA depletion (and the gene mutation that’s causing this which my doctors are still trying to pinpoint exactly), my mitochondrial DNA is getting more and more depleted as time goes on…
I don’t know what’s up ahead….but I will just keep doing what I’ve been doing the past several years and not give up. Mito can take away so much, but what it can’t do is take away my hope in Christ.
I’ve been reflecting on Psalm 31 a lot lately. There are a few verses that especially encourage me and help me.
“….But I trust in the Lord. I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul….you have set my feet in a broad place…
Be gracious to me, O LORD, for I am in distress; my eye is wasted from grief; my soul and my body also…
But I trust in you, O LORD; I say, ‘You are my God.’
My times are in your hand .
Be strong, and let your heart take courage, all you who wait for the LORD!”
~Psalm 31:6b, 7, 8b, 9, 14, 15a, 24
It’s so comforting to know that my times are in God’s loving hands. Past, present, and future. He sees my affliction and knows every time my soul is in distress (verse 7). And He does something about it—He “sets my feet” firmly on the ground (verse 8b) so that I don’t stumble or keep falling from the heavy weight of this hard path. So, as the end of this Psalm says, I will be strong and let my heart take courage after hearing this news. I won’t despair.
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I said goodbye to my palliative care dr. this past Monday. I so wish he didn’t have to go, but he’s leaving OHSU to become the director of the Serious Illness Care Program at Harvard which is a very prestigious position….my pain dr. told me that Boston was the first to start Palliative Care.
I was able to get a picture with my palliative dr. when I said goodbye. I posted this on FB, but I know some of you aren’t on FB, so here it is..
On Tuesday, I had a follow-up with my pain dr. My body has been becoming tolerant to my current pain med, and it’s not working as well—she said it’s good to rotate pain meds around every 3-6 months to prevent tolerance. I have to soon start a certain med (which also helps pain) that is good for resetting the opioid receptors.
She also told me about a possible new treatment for my chronic intractable migraines which doesn’t involve medication of any sort. It’s this super cool non-surgical device that stimulates a specific nerve….kinda like a TENS unit but for migraines. We’re waiting to hear if my insurance will cover it.
Overall, this appointment was really helpful, and I’m so thankful she’s not going to move or leave OHSU!
Today I had my monthly follow-up with my GI specialist. I lost more weight, even though I’ve been increasing tube feeds. He said my oral intake needs to include more carbohydrates and fats, and he’s also adding an extra day of lipids (fats) to my IV nutrition. I mentioned on FB how I threw up such a large amount one evening last week, even though I hardly ate or drank anything that day (I told him I was puzzled why I threw up so much without eating barely anything). He explained that our stomachs make 1-2 quarts of stomach juices per day, and the small intestine is supposed to absorb it. But because my small intestine (in addition to my stomach) is not working well, that’s why I just threw everything up. He prescribed me another anti-nausea medication to take when my regular one doesn’t resolve the nausea.
Next week, my family and I leave PDX to travel to California! My appointment with my mitochondrial geneticist in Pasadena is on the 25th and will last 3 or more hours. :O This is my first time seeing him in clinic, although I have met him before at the UMDF symposium. So grateful for his willingness to see me and go over all my gene mutations and variants of uncertain significance. Praying he can offer some other types of treatments to slow the disease progression.
I’m excited to spend time with my whole family in sunny CA, too!
