October 21, 2019

Why has it been so long since I’ve created a post? Well… I’ve been thinking I would die very soon. It’s amazing how much anxiety comes with thinking there’s not much time left, and how trivial keeping up the blog seems at that point. I’ve also been dealing with persistent nausea that has just been resolved by a new nausea medication! (Yay!) So, for the first time in a long time, my hope is renewed and I feel like I can think clearly enough to write.

Health snapshot:

  • I had a kidney biopsy that showed my kidneys will not recover. I’ll need a transplant in order to get off dialysis. 
  • I had a bone marrow biopsy that showed my blasts are miraculously down to 1%!!! 
  • There’s a new study that just got published out of Boston of people on dialysis that got kidney and bone marrow transplants from half match donors simultaneously. There were eight participants, two died, six are still alive 4 years out. 
  • I had an appointment on Friday (my birthday!) with my favorite oncologist. I was hoping for a timeline and a plan, but these things move slowly. His recommendation is for me to go to Boston to get the double transplant. They may or may not accept me into their program, but we should find out in the next couple months. If I can’t go there, I would proceed with a bone marrow transplant here in Madison, and then be looking at a kidney transplant a year or two down the line.

Life snapshot:

Despite all the craziness of this season of life, I had a great birthday! Jenna came down for a visit, and she came along with Mike and me to plasmapheresis on Friday morning. My team of nurses threw me a little surprise complete with cake, bubbly grape juice and a birthday pig. What more could I want??? We then had poke for lunch, walked around down town, went back to the hospital for the oncology appointment, and laughed out way through writing a country western song while we waited around in waiting rooms. 

Taking my pig for a walk. It’s a real responsibility, owning a pet.
I got 82 birthday cards this year! THANK YOU everyone who took the time to send one. I appreciate all your prayers and well wishes… I’m surrounded by such a loving group of wonderful people!!!
My dad and Marian. Surefire way to melt my heart.
Kids are keeping up with tae kwon do and doing a great job!
Marian’s flying lessons

Pray…

  • Now that my kidneys have been medically proven to be done, it seems a wonderful time for God to heal them miraculously! He did it with my eye… if you remember, the docs had said I would need surgery to fix the blood clot in my eye so I could see again and God healed it with no intervention needed! Please pray my kidneys would be healed in the same way!
  • I would love prayer for a speedy set up of the transplant. It could take a long time to coordinate… and I can’t wait to get off dialysis.
  • If my kidneys don’t recover, please pray that Erica would pass the kidney transplant screening process, and have no ill repercussions from donating.
  • Praise God for lessened nausea! Praise God for my cancer cells being down to 1%! Praise God for all those who are praying for me and my family. How could I ever thank God enough for all the prayers people have prayed on my behalf? They are a joy and a sustaining grace… a gift I don’t deserve… a demonstration that I’m loved… thank you.

15 thoughts

  1. Oh Heidi….wish I could give you a big hug! You are amazing and we know you are in Gods hands. We don’t always understand… but still we trust! Will continue to pray for HEALING and for the other things you mentioned! Love you!!!

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  2. So thankful for your renewed hope and some good news. So glad to get the whole story and to see all the wonderful pictures! Marian has gotten so big! So great to see your smiling face too! Thank you for the specific prayer requests! That is very helpful. Love you and will be praying!

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  3. What a joy to hear from you, Heidi, and to see you so beautiful in these pictures despite EVERYTHING. Yes, may the Lord heal your kidneys. Please, Father. We prayed. My kids and husband and I prayed for “Mommy’s friend Jenna’s sister Heidi” over and over leading up to your biopsy and celebrate those low blast cell numbers with great gratitude to our merciful God. I prayed that you would have a fantastic birthday and so glad to hear that you did, because God gave you joy. We will continue to pray, and thank you for sharing these specific requests.

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  4. My dear (soon to be )transplant ‘sister’ .
    I am amazed at how God has all the details planned out ahead of time….
    Love and prayers always . By the way, I was raised on a hog farm in Kansas and that pig is a big responsibility !

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    1. Our Lord does have a sense of humor! (Referring to your donors comment) Heidi, I worked with your sister Jenna and she has been sharing your story on fb. You are in my prayers and as I know you know, nothing is impossible as we trust in Him.

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  5. Praying for you and continually praying for your son James. God bless you as you persevere and trust for His timing and healing!

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  6. Sending love from Boston – please know you have friends here! If it’s helpful to you or your family to connect with someone local, please don’t hesitate to reach out to me. Warmest wishes!

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  7. Heidi, we are praying for all of you!!! If Erica has ANY questions concerning kidney donation please have her contact me. I donated a kidney in 2010. I could give her first hand experience answers.
    We love you and your family!!!!

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  8. Dear Heidi, thank you for this update. I am in tears reading through your post because you have been on my mind a lot these past few months and it makes me so happy to see you smiling again. We pray for you regularly in our household. We will be praying that you get a spot for a double transplant surgery in Boston under the care of good doctors and that if not that a successful bone marrow transplant would take place in Madison followed by a kidney transplant soon after. Take courage, my dear sister. You are my hero, one of the bravest moms I know. God will indeed help you get through this.

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