July 16, 2019

Today is a good day.

After just a couple weeks of plasmapheresis, my LDH and haptoglobin have returned to normal range! This means it’s working! This means the hemolysis had stopped! This means the kidneys finally have a fighting chance at recovering. It has been months however of kidney damage… but we’re not losing hope. We are praying God will bring them back. The plan is to continue plasmapheresis (switching out my plasma for donor plasma) for at least another month, then do a kidney biopsy and get a feel for how viable they are. My other blood numbers have also been good, so I haven’t needed any transfusions in over a month!

How is life going?

My days are filled with appointments. Dialysis takes up a lot of time, as does plasmapheresis. These along with the medications I’m on leave me worn out and nauseous. On a more positive note, I’ve been exercising on the elliptical machine and slowly increasing my workout time. I’ve also been gaining a little weight despite the restricting diet.

One of my favorite kidney-approved concoctions… a little bit more salt would make it amazing

The kids have been away at Granny and Grandpa’s and that’s left extra time for Mike and me to bond and do fun things around Madison. I’ve been pleasantly surprised by some restaurants that were willing to cook with less salt for me. My favorite thing has been to take it slow in the mornings… sip coffee, chat with Mike, read, pray… no interruptions… no fights over who sits in my lap and knocks over the coffee. But I do miss them. They’re driving back right now, and I’m looking forward to hearing all about their trip.

We spent some time on the Terrace.

The biggest highlight of the last week has been getting to spend time with my sisters. They are the joy of my life. We laugh together, and create together, and process life together, and it is ever so sweet. One of the most fun times was writing together. There we were in the hospital, in a tiny curtained cell. I was on a bed hooked up to the pheresis machine and Jenna pulled out her laptop. We’d jokingly come up with the pen name Jerome Vivaldio and fantasized about what sort of ridiculous novels he would write. So, we decided to start a novel by Jerome Vivaldio! We laughed and laughed. The novel is called “Symphonic Treachery”. We passed the laptop around taking turns writing and reading out loud as we went. We even had one of the nurses shaking with laughter. It felt like a triumph.

Eating poke bowls.
My perfume smelling abilities are truly shocking
My wonderful parents came for a visit as well. My chipmunk cheeks from the steroids with hopefully subside soon…

19 thoughts

  1. I continue to pray for you and follow your progress! I met your mom a month or so ago and she shared your story with me. You and your family are so strong and brave! Your strength is such an inspiration!
    You have a very lovely mother!
    Keep staying strong!

    Like

      1. Though I think Jerome Vivaldio would write with a tiny espresso cup, at a gleaming high counter on a bar stool, in a blank personality-free place, staring vacantly down his long protruding nose dourly at the passers by.
        Typing with long sallow fingers. Round black frame glasses. Long large face. Thinning black hair. Slender dark pants riding up as he sits revealing a swath of skinny ankles clad in modish business socks.

        Like

  2. My heart rejoices! Thank you for this update. Praise our gracious Lord! Continuing to pray. Thank you, Lord, for sisters <3!!! and spouses and parents and children. And salt, more fully appreciated when withheld. Thank you for allowing Heidi to be salt and light even through her suffering.

    Like

  3. Your sister writing trio is hilarious…. I thought the cheeks might be from a little bit of steroids. So love seeing your face and that you are up and doing things.
    Praying and thinking about you daily.

    Like

  4. Chipmunks WERE my favorite animal when I was a little girl, but no, their cheeks do NOT belong on your lovely face so I will be glad to see that side effect of those steroids go away!

    I don’t know how it is that God has blessed me with such amazing and wonderful daughters, “3 Sisters”, who love God, love each other, and love life!! You have wonderful husbands, delightful children…. who could ask for more?!?! …well actually, we all ARE asking for more: full and miraculous restoration of your kidneys!! Continued “non-active” MDS (thanking God it has been quiet these months!). Restored physical strength and stamina for your body. Continued protection against injury, infection or illness…. (Sepsis: been there, done that, NO MORE!).

    Everyone is thrilled to hear from you… and your Dad and I more than anyone!!

    Love and Hugs,

    Mom

    Like

  5. Sólo puedo decir que lloro de pena y alegria al mismo tiempo, que ruego y doy gracias a la vez, que envifio la situación al tiempo que la detesto, pero pie encima de toda esta mezcla de sentimientos, veo a Dios trabajando… en ti, en tu familia y en nosotr os, tus amigos y ahora admiradores. Estas en mi mente y corazón casi todo el tiempo y me doy cuenta de como os amo, querida familia.

    Like

  6. It makes my heart glad to read about the positive things this treatment is making. Even more glad to read the funny goofy things the Satterthwaite girls are up too.

    Like

  7. Heidi, together with your amazing family you have engineered huge hope, love, laughter, writing, magic meals, and incredible strength. Wonderful to hear of your excellent progress and your R and R whilst the kids were also on vacation. A great caring time for everybody. Our prayers are with you everyday, your inspiration is awesome. Huge love and prayers from Africa. Xxx

    Like

  8. YES! Such good news. I think your cheeks are adorable. And you and your sisters together. Thinking about you all the time.

    Like

  9. Oh, how I’ve been praying for this blog to get here! My heart is singing, and my eyes are flowing, trickling tears down on my own chipmunk cheeks! You ALL are in my heart etched so deeply!

    Like

  10. Heidi, You’ve been on my prayer list for some time now. We met when you guys were stationed in HI. I’m Austin Rutherford’s mom. I still remember your big stroller that held all 3 boys and how you maneuvered it to the grocery and around the neighborhood on base. Y’all were so cute! (You probably know that Austin & Jennifer are now stationed at Ft. Hood, TX. My husband & I are going to be living near them temporarily while Austin is deployed, to help Jen and the boys.)
    Anyway, it was so good to read about the improvements you are experiencing in your health! Love seeing pictures of your wonderfully supportive – and sometimes hilarious – family! Praying God’s best for you ALL!!!
    Love, Marcia Rutherford

    Like

  11. Heidi, so so glad to hear from you and hear the good news that something is working. I am so glad you had that fun bonding time with your sisters. Sisters are the best, especially when you can laugh together! We thought of you when we were in Heidelberg 😘. Thinking and praying for you. Praying for those kidneys! Love you and miss you!

    Like

  12. So glad to hear of the positive news. We continue to pray. Also, Eagle Creek Grace Bible Church faithfully prays in Sunday School each week.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s