Status Report

I want you all to know how much we appreciate all the prayers, visits, activities and gifts for Sarah while she’s been living at the hospital the last two weeks. It makes her so happy that her room feels like “home”, and that everyone loves and cares so much about her. She is feeling better than she has for months, and it is so good to see her skinny, happy and energetic again.

I also wanted to let you know about a couple of things that happened this last week. The doctors went before the transplant board again to review her case and her status has been moved back to 1B. The criteria to be at 1A is pretty stringent, and unless she’s expected to die within weeks without intervention, she does not qualify for the 1A status. There are internal monitors, milrinone at a higher dose, and a few other things that would qualify her, but we’re no where near needing those things yet (thankfully). Her doctors were going to try to appeal, but for now, there is just nothing they can do about it. Most of the criteria is based on straightforward heart failure, and doesn’t account for peripheral damage caused by the heart. As far as her actual heart function goes, it’s still beating strong and doing as well as it can hooked up like it is. So, with a status 1B, she technically doesn’t have to live at the hospital anymore. However, we felt that the benefits of having her at the hospital with all the pre-transplant support she’s getting, plus being able to closely manage and adjust meds and nutrition on a daily basis really outweighed the inconvenience and hardship of being apart. When she’s home, she’s sick, alone a lot, and struggles emotionally and physically. When she’s at the hospital, we miss her, but now that she feels well and is so happy, we don’t really worry anymore. She really has everything she needs and then some. It was weird making a decision like that. But, it was unanimous. We all want her to feel well and get all the help she can to be prepared for her perfect heart, and we’ll just have to work out the details of being apart.

Another disappointing development this week was an antibody found in her blood. They’re not sure if it showed up when she had her head cold last month, or if it’s always been there but not shown up because her PLE was so out of control. (Antibodies are proteins, and when the PLE is so bad, she sloughs proteins.) This antibody is one that may go away, and she’ll be tested again next Thursday (results back the following Monday). Certain antibodies are not a problem when matching a new organ, some are simply a judgment call, and others cause organ rejection without a match. This particular antibody has to be matched and it’s in the “64% range”, which means is that out of 100 hearts, about 64 of them will not qualify as a match for her.  That news is kind of disheartening if you choose to think about it for very long. So please don’t. We’ve learned that things change pretty quickly around here, and if you continue to focus on the hard things, you miss the miracles.

As you pray for Sarah this week, would you please keep in mind our desire that this antibody issue will be resolved? Her chances of getting a heart soon may depend on a wider range of possibilities. We do know that Heavenly Father is in charge of this, and just as He can’t grant the blessing of a south wind to one sailor and a north wind to another at the same time on the same sea, we must pray for his will to be done, and trust that he’ll grant the blessings we pray for when the time and circumstances are right for all the people involved in this heart transplant journey. Thanks again for your love, prayers, and every little thing you’ve done. We really can’t do this without you!

~ Julia

3 thoughts on “Status Report

  1. Love you guys. And I’m sure inspired by Sarah’s faith as well as yours. Thinking of you and praying for you.

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