April 15, 2019

I’m back in the hospital after waking up two nights ago in a wet-lunged panic. I couldn’t catch my breath. Mike drove me to the E.R. and I got admitted. It was so much work to breathe, my ribs were aching, and I couldn’t think as clearly as usual. I’m getting dialysis to dry me out… and now I can breathe.

Enjoying the sunshine and watching the kids play in the back yard

The big Thursday appointment I spoke of in my last post yielded no answers. I was hoping for option A, B, C… but it turns out it’s not that simple. What’s going on?

  • A kidney biopsy is happening tomorrow. These can be a pretty big deal. Kidneys are sensitive and don’t like being poked. I’ll spend the night at the hospital afterwards and will be monitored just in case I need a blood transfusion or other attention. The biopsy will show what sort of damage there is to my kidneys and hopefully show a clear path towards reversing the damage.
  • I’m in a holding pattern of retaining fluid and getting puffy in the ankles, face, heart, lungs (ugh… my least favorite), and getting dialysis to get the fluid off and clean the blood. The amount of fluid they’ve been taking off hasn’t been enough which has landed me back in the hospital for some extra dialysis. Part of keeping the water off is also a happy kidney diet: low fluids, low sodium, low potassium, low phosphorus, to be eaten along with my usual pile of pills at every meal. Yum!
  • We just found out today that my heart function has taken a moderate hit– I’ve gone from 60% efficiency (normal) to 40%. This is most likely caused by the chemotherapy. It’s been well documented that one of the ingredients in vyxeos called daunorubicin can essentially make your heart worse at pumping. The heart doctors say there is a possibility it can be reversed, and doesn’t put me out of the running for a transplant… but it’s something else gone awry. This could also be contributing to my breathing troubles and to the fluid buildup. I have some fluid buildup around my heart as well that’s not helping.
  • Will I make it to transplant?? At this point we just don’t know. I can’t get a transplant if my organs aren’t working.
Marian
David
Liam
James

Being around my wonderful kids has been a delight (and made me too busy to blog!). They are such interesting people… and interesting to figure out. One of my favorite things about being their mom is trying to figure out how to connect with them in their different stages. For James right now its through listening to him and asking him questions about the comics he makes, the shows he likes… For Liam it’s through his imagination- he’s thrilled when I wrap him in a blanket and pretend to make him into food of some kind. For David it’s through projects or puzzles or games. For Marian… well, she’s 2. She says NO, but then connects with snuggles and jumping and dancing in the kitchen.

Pray…

  • Peace for my kids, and that they would learn wonderful things during this experience.
  • Joy and endurance for me and for Mike, and for our faithful family who keep showing up to help.

10 thoughts

    1. Continuing to pray for you and your family Heidi. You are a faithful and strong young woman. Deep the faith!
      Joyce briggs

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  1. This is a little bit of a left turn, but God knows the course of all of this -thank heavens!
    I have had three kidney biopsy’s and they’ve all gone really well. A little Lamaze breathing and it’s over. The hardest part is laying still for a while with a 5 pound weight on your belly.
    You’ve got this!

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    1. sending you hugs from South Carolina and will continue to pray on prayer request. Freddy, Logan and I are headed back to Monterey in a few weeks for a friend’s wedding. We’ll of course go to Sanctuary for service and I was just thinking looking at the pictures of Mariam now, how odd it will be to be back at SBC without you rocking beside me in the cry room, as we share smiles of exhaustion on how far we’ve come since the first few newborn nights. thank you for blogging and continuing to write
      the good and the bad. ❤ pic of you looking out the window at the kids! xo

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  2. Heidi,

    A dear friend of ours in Bloomington let us know about your blog and your journey after speaking with your sister, Steve and I are praying for you and your family. We are praying “On earth as it is in Heaven” for you. Praying for His supernatural healing of the blast cells, your kidneys and every organ that has been affected by this disease. Praying that you become stronger and your immune system is completely restored, however He chooses to do so. He specializes in the seemingly impossible. We pray for your husband, your kids, your sisters (and their families). Also praying for His peace and His comfort and His joy as you continue to journey through this. You are shining His light through this blog. You are a remarkable young woman. Always have been. :).

    In Him,
    Steve and Dori

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  3. I am praying for you, dear sweet Heidi. I’m so sorry you’re going through all this. Your beautiful family and your precious heart is so amazing and I am praying praying praying for you.

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