June 24, 2019

Marian getting glasses

A lot has happened since my last post:

  • I got sepsis and spent a week in the hospital. It was caused by having salmonella in my blood. 105 degree fever doesn’t feel good at all. A few antibiotics later I started feeling much better. Now I’m home but need to continue the antibiotics for six weeks to make sure the salmonella isn’t hiding out in my body somewhere.
  • My eye is getting better without surgery!!! Praise the Lord!!! It’s still a bit fuzzy, but the blob of a blindspot that used to be right at the center of my left eye is gone! I was even able to drive comfortably yesterday.
  • I had another shorter hospital stay after coughing up blood and then throwing up blood. This came to nothing, thankfully. Both have stopped now.
  • I have started plasma exchange. This is a procedure similar to dialysis in that it uses the same catheter in my leg to pull out the blood, but instead of filtering it it pulls my plasma out and exchanges it for donor plasma. It takes just over an hour and a half. What benefit is this to me? Well, unfortunately we realized that the super expensive medicine (eculizumab) that was supposed to shut down the hemolysis (breakdown of red blood cells) that’s happening in my blood wasn’t working. The theory was that the complement system of my immune system was the one at fault for the hemolysis, and yet even when it got completely shut down by the drug, the hemolysis was still happening. Plasma exchange may take care of whatever antibodies are causing the problem. Or not. Hemolysis is what’s hurting the kidneys and needs to be shut down for them to have a chance at getting better. This is the last straw for the kidneys. If this doesn’t work… well, it’s the end of the line. God, I’m in your hands. Please heal my kidneys!
Summer Rock Band

How am I doing?

After feeling terribly depressed a few weeks back, I’m doing much better now. While I was depressed I experienced a surreal lack of emotions. I would see little Marian do something cute and feel none of the emotions of warmth or joy that I used to. All I could feel was an eagerness to be finished… to have no more pain… to just die and be over with it all as quickly as possible. It didn’t help that so many of the things I used to find pleasure in were now taken away: I can’t take a bath or a shower, I can’t eat salty food or much potassium or phosphorus, I can’t do ballet or pilates for fear of kinking my femoral catheter, I can’t take care of the kids by myself… And so I started an antidepressant that seems to have helped. I now find more pleasure in doing things! It also helps that I’m not allowing myself to think about death any more. I’ve accepted that I could die any day, but it doesn’t mean I have to think about it every day. It’s too depressing. Especially when I actually believe that God is going to heal me. There is still hope.

Enjoying some sushi! (I ordered a cooked one and avoided the soy sauce to keep the salt down.)

27 thoughts

  1. You *will* get through this, Heidi! Every step of progress is worth celebrating. Sending love from Boston 🙂

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  2. Thank You God!!!! …for this answer to Jenna´s Day 1 of prayer for Heidi´s sight! Thank you for your healing touch on her eyes. Thank you for your special care to bring Heidi through sepsis week, how she came out amazingly better on the other side!! Thank you that through this whole ordeal you are a Good and Loving God, and that no matter how things seem, there is always something to thank you for. I am looking forward to what else you are going to do that will cause me to continue thanking and praising you. Amen, and Amen!

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  3. So good to read an update from you, Heidi! Grateful for the significant improvement in your eye as we’ve prayed and for uplifting of your spirit as we continue to pray! May God grant you to experience indescribable joy and healing. A verse emailed today was Matthew 16:25, “For whoever desires to save his life will lose it, but whoever loses his life for my sake will find it.” You have had to lose for a time so many integral parts of your life in the last 6+ months, but as you trust God in His purposes and plan (unknown to us, but known to Him), and suffer these great afflictions as His beloved daughter, He will not fail to reveal His Life in you! I am trusting and praying for this with you and can’t wait to rejoice in how He does it! Galatians 2:20 is also so powerful. A Scripture that saved my sanity when I was done, just couldn’t handle the sorrow and fear of my cancer any more. “I have been crucified with Christ, and I no longer live, but Christ Jesus lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me.” I’d pray, “I can handle this–Jesus, you’ve got to!” Somehow, He always did.

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  4. Hi Heidi! It is so good to hear from you and please be assured that even when you are not blogging we are praying for you and thinking about you. So good to hear your eye is healing , yay!!
    Now our hope is that the new treatment for your kidneys will bring healing because of God’s healing power in your favor.
    Nothing but love for you dear girl.
    Vicki

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  5. Hi Heidi…this is Linda. I met you in Pam’s ballet class briefly in Monterey. I just want to let you know that we all think about you daily and send you all the love and prayers that life can bring you. Incredible strength lives with you inside and out. May healing with you kidneys be soon and that you remember that everyone is praying for you and your family. Your children are precious and may that bring you happiness and strength everyday to keep fighting……….warm thoughts, Linda

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  6. Hello Heidi, This is Linda from Monterey. I met you a while back in Pam’s ballet class at MPC. I am so sorry to hear the news but so glad that you are providing us with your blog. Just wanted let you know that warm thoughts are coming your way from all of us here and that we think of you often. Your strength to fight this illness is unreal….you have such a precious family and the love is tremendous. Please know that we are all praying for you to get better with your kidneys and healing will come soon. Much love to you Heidi…… Linda

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  7. Everyday at 8:30am my alarm rings to pray for you Heidi. That paradox from Jesus is so hard to understand (loose your life to find it) but many of us do see life in your words, in your decisions of faith when the situations seem so unclear, when other cancer sufferers affirm your honesty and the complicated reliance you strive to lean on the Lord. Heidi your spirit **is** alive even as you are giving more things over to the Lord’s will. Praying too for Mike and your children and parents and sisters. Phil Barker from your parents’ small group.

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  8. Hi Heidi:
    I’m a friend of Jenna, and I have been and am praying for you. And I won’t quit. I have asked God to interpret my heartbeats as a prayer for your recovery. Unless my heart stops beating, my prayers will continue.

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  9. Thank you for sharing the update. I pray for you often. Your sister is awesome. (Mine is too. 😉 Paul JUST outgrew the pair of shoes you handed down to him from Marian. I’m passing them on, because they still have good use left in them. Putting them on Paul every day has been a reminder to pray for you.

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  10. Dear Heidi, from the beginning of time, God put healing, nourishing power in the rich abundance of plants He created. Super powered nutrition is essential in winning against cancer and in surviving the ravages of cancer treatment. PLEASE look into “Gerson therapy” and “Chris Beat Cancer”. Chris eskewed chemotherapy in favor of super powered food choices. I don’t suggest that you do that, but do urge you to super power your food choices so your body has access to the healing power God put into His creation. People don’t die from consuming super nutritious food. Cancer depletes us, cancer treatment depletes us. Get serious about food the way God made it and add super nutrition to your arsenal. Get someone on your team to do the research. There’s a lot to digest (pun intended) but it’s no laughing matter. Your life is in the balance. Nourish your body deeply and richly to tip the scale in your favor . Love, Nancy and Jonathan

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  11. Dearest Heidi,
    We were in ballet together at MPC in Pam’s class. Our piece in the dance concert this year was dedicated to you–I am thinking of you and praying for your recovery ❤ I would love to send you the video. Pam's choreography was stunning.
    With love

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  12. Dear Heidi,
    I am on my knees in prayer and tears for you. I plead to God to heal your kidneys and restore your health. Hold fast in the faith and know that you are dearly loved. These are such fiery trials you are going through but He will give you the courage and the strength you need for each day and so much more.
    Sending you my love from Monterey,
    Seung-hee

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  13. Tiene que ser que en medio de este inmenso dolor, en esta oscuridad, Dios está, envolviéndote como una neblina… quién sabe sino Él el porqué de todo esto… quién sabe todo el amor y compasión que tiene para ti. Cada milímetro de tu ser es la prueba de su amor, eres tan única, tan hermosa, incluso la enfermedad es parte de su obra. Te abrazo y te agradezco infinitamente por poder verbalizar tu vida, tu hermosa vida.

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