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.)

10 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. 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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  6. 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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