Mastodon Friday Afternoon — kayray.org

Friday Afternoon

Good news, everyone! I’m going home! The docs have decided this was just an arrhythmia that snowballed. Nothing new, nothing scary, not a heart attack, not acute heart failure, just my PAH getting a little nutty. Didn’t need any hideous tests or procedures. They said I could stay another day if I wanted to (hahahahahahahaha) but that they were happy to send me home today.

I spoke to many docs today — my new pulmonologist, a doc from the congenital cardiology department, a bunch of other general docs. I even met the pharmacist who handles the acquisition of my fancy PAH drugs. So nice to have met the person who will go to bat for me when the insurance company wants to deny coverage and kill me!

I am beyond impressed with the staff here. Every nurse and every doc has been kind and ultra-competent. Everyone took the time to listen to me and answer every question and explain everything. Everyone treated me like an intelligent adult who understands her condition and treatments. They took my adhesive allergy seriously and removed everything sticky from my skin as soon as it was safe. My wonderful nurse David even unhooked me from the monitors and removed my IV ports when they discharged me, even though I need to stay here for several hours till Henry can collect me. (Usually they refuse to remove IV ports until you are literally walking out the door “just in case”)

The cardiologist took time to explain why I shouldn’t worry about keeping my o2 sats at an arbitrary level!! He said it doesn’t matter what the numbers are as long as I’m comfortable. He said it’s actually good for my body to compensate, and that I’ll produce more hemoglobin if I need it! Fantastic news. He said some people feel just fine in the low 80%s or even 70%s (I don’t, but I usually feel fine down to the high 80s) and it’s often better, especially with the balancing act my heart performs, to allow your body to compensate rather than push too much oxygen in. The way my heart operates, see-sawing between dominant ventricles, that extra oxygen doesn’t even necessarily get into my blood. (Which also can account for my infamously unpredictable Good Days and Tired Days)

So I’m just chillin’ in my room. Got caught up on two days of twitter. Finally finished the big dinner I ordered last night. Waiting for my Pfizer covid booster to be sent up from the pharmacy.

Oh — the only changes to meds so far is to take a potassium supplement and reduce my amiodarone dose to 100mg/day, which is half what I’ve been taking since my last a-fib episode in July, when they increased it to try to prevent these episodes. It’s not a safe long-term drug so they’re gonna try to find a different anti-arrhythmia drug when I come in for my first clinic visit next week.

Thank you, OHSU, for the excellent care.

Whew. It’ll be so nice to sleep in my own cozy bed tonight, and Dave should be home this weekend (with a truck full of woodworking tools) so I can get a good big dose of cuddles!

Category: Blog One comment »

One Response to “Friday Afternoon”

  1. Kathy

    Tears of relief and thankfulness that this medical facility has been so responsive and resourceful. How interesting and sensible that the oxygen level that’s right for you might not be an arbitrary number. Love to you.


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