April 27, 2024
2 Years 1 Month
This last week we watched Tate continually decline but couldn’t quite figure out what exactly was going on. It didn’t seem to be anything acute. Low body temp, really low BP, increasing nausea, and so sleepy. (Of course, it’s all crystal clear now!) I would give Tate extra IV fluids, get her BP up for it to just drop again a few hours later. We were having lots of conversations with her team, but I did not want to bring her in. Labs didn’t look viral or infectious and she wasn’t dehydrated. Belly pain was starting and it dawned on Tates rheumatologist that maybe Tate was headed into an adrenal crisis.
Tate has adrenal insufficiency. Prior to transplant, she was dx with Addison’s-primary AI. Transplant eliminated the antibodies, categorizing her as secondary after BMT. The difference is that some can recover from secondary. That has been our hope. Either way, you are dependent on daily replacement of cortisol as your adrenal glands no longer are making it. This is necessary to live. Healthy bodies make cortisol all day long. More for any emotional or physical stressor…..if you have an injury or even if you’re upset. Fevers, diarrhea, vomiting and physical illness, anesthesia, surgeries, etc all require “stress dosing” in someone with AI. Tate carries an emergency injection in the event she can’t absorb these oral doses through her GI system or is unconscious. If you don’t supply the body with the cortisol it needs when it needs it, you will die. The biggest risk with AI (adrenal insufficiency) is that people don’t realize they are needing more, their BP tanks and they just don’t wake up. That became our scary reality this week.
In many with AI, they are healthy much of the time, so it’s not as challenging to know when to stress dose. Tate deals with pain and nausea daily. We aren’t sure what tipped her over this week which is why I missed it and it took a good 24 hours for her team to clue in either. The additional steroids gave a dramatic and rapid improvement. And we are so beyond grateful for that! Her daily dose will now be increased permanently.
Tate has had several hospitalizations for adrenal crisis since transplant. In the last 6 months, there’s been gentle encouragement for me to trial her off her daily hydrocortisone (replacement steroids) to see if her adrenals would wake up. I’ve been dragging my heels. Too much going on and it just didn’t feel right. Her endocrinologist has now said we likely won’t ever do that. She is probably primary AI -Addison’s that just looks different due to BmT. This isn’t a simple or small diagnosis, but a complex and serious one. So hard to live with and manage and the must difficult one for me to figure out as her caregiver and mom. A friend likened it to trying to manage type 1 diabetes with insulin without a glucose monitor or way to measure blood sugar. That feels about spot on. But as usual, I’m grateful for a little less gray, and a little more understanding at least as to us and her team knowing we need to be more vigilant. This week could’ve ended very differently. We thank God for keeping Tate safe. I’m also grateful to a medical team that allows us to just be home. Some days I’m overwhelmed at playing hospital at home. But most days I’m just grateful to be here instead of the hospital.