411: Dilated Cardiomyopathy

411: Dilated Cardiomyopathy

You can’t pass the MCAT with this, but you might be able to explain it to your kids.

Dilated= Stretched out, wider, larger

Cardio= Heart

Myo= Muscle

Pathy= Problem

The heart is a pump. Like a bike pump that moves air. Like a turkey baster that shoots fluids out or sucks fluid in. It’s a really fancy pump with 4 chambers. Two small chambers that fill and push. Two big chambers that fill and push. And four valves that open or close with the squeezes. The Right Pump pushes blood to the lungs to pick up oxygen and give off  carbon dioxide waste. The Left Pump pushes the good blood to the whole body. A miraculous, perfect design made in the first weeks of life out of a tube, with precision origami folds!

As Ian’s heart weakens from muscular dystrophy, it gets bigger. Bigger might sound better. But his didn’t get stronger. The muscly chambers can’t squeeze hard enough to push the blood where it needs to go. Think of a balloon that gets blown up, then deflated. Blown up then deflated. Eventually it gets worn out. Stretched out. Definitely bigger. But not better! As the heart grew bigger, the spaces inside got bigger. And that messed everything up…

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Bigger space means the special valves or doors between the chambers got spaced out. The valves need to open and close all the way, at just the right time for good blood to really move through the body.  But when everything is stretched out, the doors cannot close all the way. Like a car window that won’t go up all the way and the wind keeps blowing in your face. Like putting a Barbie sized door on a TONKA Truck. Like running down a hill with a big bowl of water with only your little hand on top to keep the water in. It’s not big enough to close the space anymore!  (I can’t find pictures of that here. But that’s what Uncle Randy did as a little boy, running down a hill with a little box of cereal and laughing as it spilled out everywhere!)

Bigger space needs more blood to fill it up in order to push it all out, or not enough will move! A bigger space takes more time to fill up. But as the rest of the body gets less oxygenated blood, the brain says, “PUMP FASTER!” So there’s less fill time. The heart get’s more tired. There’s less blood pumped out.  Ian’s resting heart rate was around 120-150 beats per minute safely for him, sometimes up to 150-180 and the alarms would sound!  So dangerous.

When God designed the heart, so many things had to be just right. And it had to be just right the first time.  It had to fit in your body and keep growing as you got bigger. The chambers had to be the right size, in the right position, with all the right tissues. With the perfect electrical wiring going to the right places at just the right pace. And it had to work well from day one. You never have to think about it. Thank God it’s not up to us to make it, sustain it, and grow it! We can do very little to make it work just right on your own. That points to a designer. And that designer is not impersonal. That designer loves us with an everlasting, unending, never stopping, never giving up kind of love. He is amazing.

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Thank  you so much going on this journey with us. I hope this helps you with your children and I hope to post more about how I have helped my kids understand our situation.  When people ask what they can do for us, two things have come to mind.

  1. Pray with faithful hearts, trusting our Father, Creator, Sustainer. He loves us and promises good to those who love Him and are called according to His purpose.
  2. Teach, model, and support your children to know and trust Jesus, to know the Good News of the Gospel that makes all things new. Teach them to Hope and long for things that are eternal, not just temporary pleasures that slip away. Tell them that Ian is right in the middle of God’s hands and will take the best care of him.
  3.  Remember how real heaven is. Scripture says:

“So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal. 2 Corinthians 4:18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  2 Corinthians 4:16

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In the palms of God’s hands

Jill

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This is what helped Ian get through the days before intubation when his legs had fallen asleep from lack of blood supply. All these loving hands for hours on end!

Days in photos:

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9 thoughts on “411: Dilated Cardiomyopathy

  1. Oh Jill. My heart goes out to you, Ian and your husband. I am praying for Ian and you and your husband. Thank you for posting. Im glad you posted today. I want you to know we are all praying fervently for you

    Liked by 1 person

    1. Zena, thank you for taking time to reach out to us. I didn’t have time to thank you for your gift..or did I? I can’t remember. There past several days have been the hardest and most blurry. God is good all the time and I am learning so much. My heart is full and weary all at he same time. Thank you.

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  2. My heart also hurts for you and yours. We will put our trust in the Lord and continue to petition Him to provide for Ian. May the Lord give you strength, wisdom, and surround you with His love and peace.
    Hugs,
    Laura

    Psalm 119:My soul clings to the dust;
    give me life according to your word!
    26 When I told of my ways, you answered me;
    teach me your statutes!
    27 Make me understand the way of your precepts,
    and I will meditate on your wondrous works.
    28 My soul melts away for sorrow;
    strengthen me according to your word!

    John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

    Liked by 1 person

  3. It’s so hard to see how this fits into God’s plan. I’m so thankful that you guys can keep perspective. You are truly a beacon of faith in a messed up world. Keep the posts coming!

    Weeping may tarry for the night, but joy comes with the morning. Be glad in the LORD, and rejoice, O righteous, and shout for joy, all you upright in heart! …for you have been my help, and in the shadow of your wings I will sing for joy. My soul clings to you; your right hand upholds me. Though I walk through the valley of the shadow of death, I will fear no evil, for thou art with me, thy rod and thy staff, they comfort me.

    Liked by 1 person

  4. Praying, seeking God’s face, praying, trusting in the Almighty, praying, hoping always, praying, casting our cares on Him, praying, kneeling at the feet of our beautiful Savior, praying, resting in His gentleness, praying, peaceful moments, praying, remembering God’s promises, praying, looking to our “Abba Father”, praying, sitting still with Jesus, praying, thanking the Lord for His love, timing, ways, and works, love and hugs, kelly and family “The Sprit himself intercedes for us…..(Christ Jesus) is also interceding for us.” Romans 8:26, 34

    Liked by 1 person

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