THIS IS MY STORY . . .

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May 18, 2017

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.

________________

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! 🙂

Post written byKerissa

Check out my previous posts below

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Hard battle. ...
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Reflections on this past year 2018 ...
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Septic Shock and the ICU ...

This post has 6 comments

  • Hannah Kolehmainen
    says:

    Your beautiful faith in Jesus stuns me. He WILL keep you, He will use you powerfully, He will give you peace. His amazing Grace will carry yo while you rest in Him, and bring MUCH glory to His name. You are a precious saint. So sorry you’re hurting.

  • Rosalie Baugh
    says:

    Hi Kerissa!
    Well. As I have come to expect from you, the heavy news you received is not smothering your sense of peace in God. You are amazingly filled with His provision for peace and joy and comfort and all those other gifts that those who move fast and comfy through life don’t stop to enjoy nearly as much! The rewards of your surrender look appealing, but the cost is significant, and I have to admit that I shrink back from the pain. May God continue to give you a supernatural ability to rest in Him daily as you endure so much. Your family, too…..the pain of seeing someone that you love so much suffer so greatly wears on them, to be sure. I’ll keep praying for ALL of you.

    I was in sunny CA on the day that you posted this; off to a work conference. It is a privilege to be a care-provider, and to realize that those we care for wish that they could give rather than receive the care–humbling to be the patient. You must bring such joy to those who are privileged to care for you!

    Tomorrow I am heading to the farm store to buy plant starts while Robert tills the garden plot for the last time. The spring has been distressingly wet and I’ve been packing my suitcase way too many times, so I find myself planting long after the usual season. If I don’t get started soon, nothing will be ready to eat until Thanksgiving 🙂

    Steven is coming this week to celebrate his birthday with us. His new work schedule is Fri thru Mon, 10 hour days, so he has mid-week days free. I’m excited to spend a bit of time, and he might even help in the garden. News from Rachel Rose is sparse, but perhaps when they return to Ireland in a week or so I’ll have the chance to catch up with her.

    Bye for now, dear Kerissa. I admire you greatly, will commit to pray for you as faithfully as I can, and trust that God will give you what we all want for you: a healthy hope in Him, relief from suffering, and a life that shines with His love and for His glory. You are a treasure! Rosalie

    • Dear Mrs. Baugh,

      I hope your work conference went well and that you were able to have some fun in CA, too! 🙂 I hope you can catch up with Rachel soon!

      We just got back from LA to see my mito geneticist. It was a quick trip but also a very helpful appointment. 🙂 I will hopefully blog all about it this week!

      I’m so refreshed by your encouraging words and prayers. Your love and support all the time keeps me going!

      Hugs,
      Kerissa

  • Thank you for your updates. I know you are an encouragement to many, many people as well as to me. You are in my prayers. I was reading about a little boy who has Mitochondrial DNA depletion syndrome in England whose parents are desperately trying to get him to the USA for a special treatment called nucleoside bypass therapy. Just making sure you are aware of the treatment. God bless you with His presence and surround you with His love.

    • Thank you so much for your prayers and support. It means the world to me! 🙂 I have been following little Charlie’s story—it’s so very sad that they didn’t win the appeal. 🙁 Unfortunately, because I don’t have a specific depletion gene mutation, I’m not eligible for that treatment…but I’m so glad to hear that it’s helping others!

      Kerissa

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