April 28, 2019

Today was a wonderful day of rest.

I’m back home now and in a holding pattern with dialysis three days a week, blood transfusions as needed, and an infusion of a new kidney treatment every Friday. The kidney biopsy I had las week showed some unexpected results- Thrombotic Microangiopathy is the condition causing my kidneys to fail. It’s a rare disease that unrolls a pattern of clotting problems in the small blood vessels and ends up damaging and killing off parts of the kidney for lack of blood flow (oversimplified… you get the idea). This diagnosis was surprising, and I’m very thankful I went through with that kidney biopsy… even though it made me really nervous… it’s not a diagnosis they would have guessed. And this leads me to thank all of you American taxpayers out there. THANK YOU. My health insurance is paid for by your hard earned cash, and the cost for my kidney medicine is… well… high. In fact it’s one of the most expensive drugs in the world! It’s called Soliris or eculizumab (the cost is over $700,000 for the first year, or between $7,000-27,000 per dose depending on how much you need).

Our fantastic Easter/Mike’s birthday/visit with Mike’s parents and Erica’s family and my dad!

How’s life at home?

  • We still have our wonderful family rotating through helping with kids, and chores, and cooking, and driving… I love them so much. My body is super weak. My mind is running on low. My eye is slowly recovering, but still can’t see all the way. I take forever to get cleaned up in the morning (I measure urine output, temperature, weight, blood pressure, and I can’t shower or bathe with my dialysis femoral catheter, so I have to carefully sponge bathe all around.)
  • My diet has become a big challenge, but thanks to my mom, it’s getting mastered. I desperately need to gain weight, but on under 2000 mg sodium per day, low phosphorus, low potassium, and keeping the nausea down. Getting enough calories this way is NOT fun. My wonderful mother has made salt free bread for me, salt free breakfast sausage, sauces, dip and -most impressively- has been tracking everything I eat to make sure the goals are met and I have a record that can then be repeated more easily moving forward. She’s a keeper.
  • My small talk has been severely affected… Today I went on an outing to Walgreens. I wore one of those keep-the-germs-away masks. At checkout the cashier kindly asked “How are you doing? You’re looking like you’re coming down with something with that mask on.” Me: “Well, thankfully I don’t have anything contagious… just trying to keep everyone else’s germs out.” Then she said: “Oh! That’s a good idea- glad you’re not sick!” Then I felt like I was deceiving her, so I filled her in: “Well, I do have cancer…” “Oh, so sorry to hear it- what type?” “A kind of nasty blood cancer called MDS.” Her: “Oh wow. How did you know you had it?” Me: “Severe anemia” Her: “Well my sister’s got anemia and can’t seem to shake it- I sure hope she doesn’t have cancer” Me: “Don’t worry, they’d be able to tell if its MDS… once they saw the shape of my red blood cells they knew to look at my marrow and it was a straight shot diagnosis.” Her: “Well that’s good to know! All the best to you now! Thanks!” Can’t I keep it light anymore??? Oh well.
Story time with “Aunt Jessies”, as Marian says.
Enjoying the back yard
Uncle Dave getting a workout in
Here are the cousins waiting to do their Easteregg Hunt. I told them to go to sleep to pass the time. I told them a bedtime story. Very few people had their heads kicked. Success.
The Egghunt. It was perfect. People, color coding eggs to kids is the way to go. You won’t regret it. It also helps to have a mother in law to prep it all and add polka dots to eggs when there aren’t enough colors to go around (thank you Sue!!).

10 thoughts

  1. Bob & I are more than happy for our tax dollars to support your Tx. Many thanks to Michael for serving in the military.
    Enjoyed your family pix and update.
    Praying for your kidneys to heal and for your total healing.
    Judy Rhude

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  2. Thank you Heidi for the updates. Love your Blog!! We are friends of your mom & dad and have been praying for you since day one. Know that there are many in “the church” the body of Christ that love you and your family and are going before the Father on your behalf. I believe that God is able to heal you ๐Ÿ™‚

    Pat & DuWayne

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  3. Hang in there Heidi. We taxpayers are great. Stephanie has the same insurance. You have to and thatโ€™s why it is there. Prayers for you the kids and Michael.

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  4. Praise the Lord for your wonderful Easter. ๐Ÿ™‚ Praying for you! Stay strong in the Lord and in the power of His might! I will be lifting up the shield of faith for you and the family! Though my heart is aching for this affliction you are going through, my heart cries out for the working of an eternal weight of glory! Though you walk through this valet of the shadow of death, do not fear evil – God Almighty, creator of Heaven and earth visible and invisible, able all, alpha and omega, Your redeemer is with You all! His Speit is over your children to give peace and to teach them. His presence is upon them! Love you so much!

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  5. Praying for you my dear friend. So glad you are home and found out what the problem was. Now for the healing to come! Love you

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  6. Heidi: I came across your Facebook updates and wanted to send you a message of comfort. It’s been a long time since we last saw you and Mike. So sorry about what you’re going through. It sounds like you have an amazing family and support system. It is also incredible how you are documenting this time in your life. My heart goes out to you, Heidi! We will pray for you and your family!

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