Not What We Hoped

Hana’s cardiac catheterization went smoothly. Her heart pressures were good and her echo looked unchanged. Hana was really groggy from the anesthesia. When we got home she vomited all over herself. I was personally very exhausted, in large part because Corrina was up most of the night before. But today we got Hana’s biopsy results. They take a small sample of heart tissue and analyze it under a microscope for any rejection. We were hoping to get a zero or 1a result. But instead it was a 2 – moderate rejection.

This was certainly a big blow. It seems likely that Hana’s very recent stomach pain was a symptom of that rejection. Her diarrhea is probably still caused by one of her immune suppressing drugs. My heart hit the floor when I heard. So, now what? The team at Stanford decided to make some big changes to her medications. First, she is going on a small amount of steroid to knock back the rejection. Then they will see her in clinic in two weeks and will do another biopsy in four weeks. Second, they decided that now is the time to switch her off the cellcept and start a new drug, everolimus. This new drug has less nasty side affects and allows for Hana to be on a much lower dose of her tacrolimus (Prograf) which has many benefits of less nasty side affects of that drug. They are doing a big clinical study of this drug regimen right now across the country in pediatric heart transplant patients. It is currently not FDA approved for kids. It is already the standard drug protocol at several pediatric heart transplant centers. So, we shall see.

So its been a down kind of day. It feels very scary and threatening to face this rejection. But I can’t let myself go down that dark hole. It’s both not helpful at all and it really drains my energy. So, we still have drugs that have worked in the past and drugs that will hopefully work even better for the future. We have great medical staff looking after Hana’s well being. We have access to great health care. We have options. We have hope.

On another note, today was really, really hard because a very close family member, whom I don’t want to name, was admitted to the hospital and is very sick. So, that has been rough too. It’s definitely a more acutely severe situation so it feels very urgent. All of this has really wiped me out! Paul and I decided to just pretend that tomorrow is the real “Valentine’s Day”.

With this recent news, I will be posting more often. Thank you all for your continued support.

8 thoughts on “Not What We Hoped

  1. So sorry to hear thos results for Hana. However, the med changes sound very hopeful and positive. I will keep Hana in my heart and prayers. She, and all of you deserve a great life.

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  2. Thoughts and prayers for Hannah and your whole family.. What you and your family have gone through puts life in perspective. You make a difference by sharing your story. Love and prayers for a speedy recovery.

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  3. OMG! I am so sorry. I just saw your email. My heart feels heavy for you and your family. Prayers coming your way daily!

    Margie

    Sent from my iPhone

    >

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