Reality CHECK…2…3…

Check… Check… Is this thing on? Oh, there you are! Sorry I’ve been absent for the past few weeks. This post is at least 10 days overdue. But I like to think it’s better late than never. On Thursday, February 21st, Sarah had a routine cardiology appointment with the transplant team. She has these every two weeks. imageShe had gotten a head cold (don’t even ask me how…) and then been feeling really crappy for about a week. Sunday she started swelling, and in just three days she gained 2.6 Kg (5.7 lbs.) and her belly had gotten much bigger. At clinic, we discovered that her albumen level had dipped down to 1.5. So, we got checked in. In the ensuing days, as our usual 3 or so days for a tune-up turned into a week, I also received a reality check. One I wasn’t really ready to accept.

In the past, we’d check in for one, or maybe two rounds of albumen and┬ádiuretics, and while the albumen levels are improving, the swelling gets better too. It usually took about 3 days, and we’d be on our way home with a skinny girl that felt so much better. This time, however, things didn’t quite go that way. One morning, about 4 days in, her albumen levels were way up to 2.7, and her belly was as swollen as ever! So, that day we just did diuretics and no albumen. By the next morning labs, her albumen was back down to 2.0…in just 24 hours. So, we started the albumen again.

I learned a little more about albumen levels. (Albumen is a protein in the blood. Healthy people have a level of about 4.0.) Albumen runs through the veins and as the fluids and other things move in and out of the vein walls like they’re supposed to, the albumen draws the fluids back into the veins and through the system. The point at which the albumen does or does not do its job is at a level of 2.5. At that level or higher, it works; lower, it doesn’t. That’s why once she goes home, the protein levels decrease because she doesn’t absorb the protein (because of her PLE) and the fluids aren’t pulled back in correctly, so she swells up, especially in her feet and belly.

Her swollen tummy matched her nurse's baby tummy.... It was funny at the moment, but so sad!
Her swollen tummy matched her nurse’s baby tummy…. It was funny at the moment, but so sad!

So, while all this was going on in her body, she didn’t really seem to be responding like she used to. It was a hard thing to realize that we might just be at that point where we’ve exhausted all the usual medicines and treatments for her PLE, and she’s headed through that downward spiral of declining health and heart failure. On the 7th day, the doctors really left it up to her if she felt like going home or not. We decided that even if we were only home for a few days, it was better than staying in the hospital. So, with an albumen level of 2.0, and her belly almost as swollen as when we checked in, we headed home.

It’s been hard to admit that she’s just sick. She’s always gotten better, and it’s so hard to see her like this…teetering between feeling kinda yucky and feeling plain crappy. (She does still use the words “pretty good” sometimes, too, but I think it’s a term relative to how crappy she felt the day before.) So, when people ask me how she’s doing, I’ve started telling them the truth. That her heart failure is getting worse, and she’s not responding like she used to. That she’s sick, and we’re trying to keep her comfortable and happy while we wait for a new heart.

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This blue smile is courtesy of the Whoppers Robin Eggs I bought her to make her smile (and then ate most of them myself).

Just so grateful that we’re already on the list (for 7 weeks now) and that her doctors are keeping such a close watch on her. So very thankful to have good compassionate doctors, an incredible place to be when she’s sick, and all the amazing nurses and support staff to help her and our family through this. We just have to wait as patiently as possible now until Heavenly Father shows us that it’s time.

~Julia

1 thought on “Reality CHECK…2…3…

  1. We saw steve at costco and he said this new normal is taking some getting used to. Good luck. You arein our prayers. Wish we could do more

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