Mastodon Wednesday evening —

Wednesday evening

I’ve had an excellent day. Henry worked from here all day, keeping me company and doing chores after work. Lovely hospice nurse Andrea came for my intake, gave us tons of helpful info. I ordered a ton of Japanese food via Ubereats — beef bento and veggie tempura for Henry and 32 California Rolls for me, to eat over the next few days. I need to graze, and they’re cool and light and nutritious. Spent too much money but oh well. :)

And then in the afternoon, Andrea called. Here’s what I just posted on mastodon:

Would you like to hear a story about american “healthcare”? 

Lovely hospice nurse came today to do my intake. Excellent visit, super helpful, excited about all the resources to help my family.

A few hours later she called. Turns out that when hospice gets involved, they become my insurance provider (somehow) and they won’t cover one of my specialty drugs because it is “life extending” and not just for comfort. It costs $30,000/month and they don’t want to eat it.

So my choice is: stop taking that drug and die in a month when my supply runs out, OR not sign up for hospice care. Guess which i chose?

So now we wait until we think I will die within the month and THEN sign on for hospice care, so i can get the drugs that will help me not feel like I’m suffocating, so my family has support, so i can get personal hygiene care, etc.

Nice, huh? It’s totally Kafka-esque.

So that was fun.

But! I just remembered I am already in the Palliative Care system! Wonderful Nurse Adam comes to check on me every couple months, and he hooked me up with physical therapy, and he keeps track of all my appointments and care plans and meds, etc. He texted earlier to say that I’d be unenrolled from Palliative now, but I just called him and told him the whole story and he’ll get me re-enrolled so he can continue caring for me, and then the Palliative Care team will be able to give me more and more care as I need it. Probably not grief counseling for my family and that kind of thing, but certainly help for me with comfort meds and personal hygiene etc. So it’s all good!

Category: Blog One comment »

One Response to “Wednesday evening”

  1. Gillian

    That made my blood boil! I knew the US healthcare system was dysfunctional, but to make you choose between living longer and living more comfortably? Words fail. I am so glad that Nurse Adam is able to step in and help.

    I’ve been following your blog since you “spoke” at my husband’s funeral, thirteen years ago. You inspired me to take up crafting again, which really helped my mental health when I was grieving. And you have changed my TV-watching habits – I’m now addicted to Taskmaster!

    Thinking of you, your family and your Englishman.

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