July 2017 – Hana's Heart

Sorry for the delay in this post, but Hana had another biopsy on Monday and when we got the results back late Tuesday she got a 1A. They treat this the same as 0 rejection. So this is great news and a HUGE relief! They will do another biopsy in a month. One great result of this news is that we will get to go on our VACATION! We haven’t left the Bay Area in two years. We haven’t visited family in 2.5 years. We are really looking forward to our trip.

The downside of all this is all the medications (other than the worry). Hana is back on steroids and three additional medications that go along with long time steroid treatment. Her face has gotten puffy, her blood pressure is higher, her appetite is voracious (now we have the opposite problem of trying to get her to eat) and she’s prone to moodiness (on top of being almost 3-years old). But we will take it! It’s great to have options to keep rejection at bay.

Thank you for all your prayers, thoughts and well wishes! It means so much to us!

I wanted this next post to be about how great the Summer Scamper was (It was great) and how much fun we had (a lot) or how amazing our team was and how we can’t wait to do it again next year. But instead it’s about rejection. Yesterday Hana had her 1st annual biopsy. We got the results today and Hana has 3a rejection of her heart. It has been a real blow. The rejection scale is this: 0, 1a, 1b, 2, 3a, 3b, 4.

Most often 3a rejection means that you are hospitalized while they treat you with steroids, but since Hana is doing great clinically, her echocardiogram looks good, the pressures in her heart are good and her coronary arteries look great they decided it’s better to treat her with oral steroids and keep her out of the hospital. So she starts back on steroids tonight and all the medications that go along with long term steroid use. She will be on steroids for 4-6 months. She will go back to the Heart clinic next week and will have another biopsy in two weeks. They also went up on some of her anti-rejection medications. I hope and pray her next biopsy will show no rejection and we can go on our first family trip in August!

With this news, all kinds of thoughts have bombarded my head. Many are dark and terrrible or very sad. I’m trying to stay positive and remember what’s happening in this moment. At this moment Hana is doing great! Please keep her and us in your thoughts and prayers. We are hanging in there, although I’m especially exhausted today!