Recent Hospitalization

Update on Emma (also posted on FB)

Guys! How are you?? It's been a little while, I know. (That's because the world had gone crazy, and I was hiding.) I will work on replying to the messages we've received, but, in the meantime, thank you to everyone that has reached out.

I thought I should finally write an update! As a heads up, some of this will be TMI, but it was requested by Emma that I share it. We still have the mindset of wanting to be as honest as we can about what it's like living with an illness like this. So...

NEW DIAGNOSIS

For starters, and for those who might not know, GvHD stands for "graft vs host disease". It's when the new bone marrow, after a bone marrow transplant, attacks the body, since, to it, the body is a foreign object. (It doesn’t happen with every transplant, but when it does, it can range from mild to life-threatening.)

Previously, Emma had been diagnosed with GvHD of the eyes (causing limbal stem cell deficiency) and GvHD of the hair follicles (currently causing her hair to fall out for a third time, just really slowly, so it's regrowing as it falls out & is short and thin now), and a couple weeks ago, she was diagnosed with GvHD of the nose, mouth, and likely lungs and liver, too. So far it's all rather mild (other than her eyes). They've put her on Jakafi to help calm things. It’s only been two weeks, so it’s not long enough to have results, but we expect it’ll keep things mild.

HOSPITALIZATION

This is the TMI part. Normally I'd tell you to pull up a chair and enjoy a bowl of popcorn while you read my novel, but you probably don't want to eat popcorn. Or chocolate. Or anything brown. Actually, you probably shouldn't eat.

The reason we share this is due to what I explained above, and, also, because if any of you can relate to this, we are looking for thoughts and advice from any experiences you guys might have had to pass along to the doctors to help them figure things out.

About 1.5 months ago, Emma complained of some constipation issues. So, we did a week of benefiber (usually fixes it), then when that didn't work, we did a week of exlax, and then when that didn't work, we did over a week of miralax (sometimes 3x a day, per drs orders). We thought it was working (because why wouldn't it), but it still seemed like something was really wrong with her due to pain she was having. So, I took her to the ER and was really surprised to learn that she was severely constipated.

They tried a thing in the ER that would definitely work (and has in the past), but it didn't. So, they tried it again, but it still didn't work. At that point, they were a bit more concerned. They admitted her to the hem/onc floor. They kept doing the "you'll take this and feel great in a few hours," and that lasted for four days with multiple different things. She wasn't responding as they expected to anything. They tried the chocolate bomb shake a couple times (transplant families, remember those?). She did almost nothing in response to them. They quickly worked things up and were eventually giving her miralax 3x a day, lactulose every 2 hours, as well as mag citrate. Two days of that switched her from "severely constipated" to "not severely constipated". So, we went home, expecting life would continue on like before. (Little side note: They started the Jakafi during this hospital stay, so it wasn't the cause of this.)

But, since being home for two weeks now, the problem is not resolved. She can't seem to pass stool on her own, and normal remedies aren't working like normal. We’ve given it time. We've tried 6 prunes a day with benefiber 3x a day, 40 oz of water, along with two doses of miralax, and it seems to doing almost nothing. We added lactulose back in, and it helps.

In addition to this, she's been having trouble swallowing. Not all of the time, just once a day or so. She says her throat feels weak most of the time. She eats more slowly now. She woke me up one night in a panic, saying she couldn't breathe. The next day, she told me that during the night it had felt like the sides of her throat were touching each other. I've been sleeping in her room since then to keep an eye on her. It hasn’t happened again. A couple weeks before this, she had seen the ENT and had a throat scope, and it all looked fine, but a few months ago, her throat was actually swollen inside for several weeks (if that was the case here, it quickly stopped). She has no known allergies that would cause this.

She often complains that her stomach feels too full, too. Like, she can eat an apple and 8-10 hours later she'll feel too full to eat much else. It doesn't always do this, but seems to most of the time to varying degrees. When she feels too full to eat, she still feels hungry, so she'll try to eat, but then ends up feeling sooo full that she has to sit in an awkward position for a couple hours, waiting for it to feel better. She's been very fatigued.

We saw hem/onc again day before yesterday (they’re directing all of this), and they want her to be seeing ENT and GI to try to figure out what is wrong and to stay on the lactulose until then. We‘ll be seeing ENT soon, and so far, the soonest we can get into GI is early January. It's difficult to wait. We've asked hem/onc to try to hurry it along, and they have, but end of year is always so busy.

She is mentally & emotionally struggling a lot. Probably more than I've ever seen her struggle. Very understandably. She doesn't have a lot of trust they'll get this figured out soon, which, considering how many years it took for her immune system to finally work properly, how long it took for the belly mass to go away, how long it's taken for her eyes to be able to heal enough to be correctable, and the fact it’s already been 1.5 months for this issue, I can see why she feels this way. As she ages and understands FA better, it's gotten a lot harder for her too. They just put her on lexapro to try to help her through it.

P H O T O S

She chose these two photos for me to post. They're from before the hospital stay and are of us on our recent RV trip. (Her long hair is now as long as you see here. That's been pretty hard for her, too.) She's still super tiny. I squat quite a bit to be in the photo with her.

Anyway, if you've made it to the end, you've earned 5 points!

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