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A better day. Got plenty of sleep, and stayed in bed resting until Henry and co. showed up around noon. Oh man they are good to me. They decluttered and tidied, did laundry, took out trash and put the bins out. Henry picked up my prescriptions, returned my library books, and got burritos for all. He also used the tabbouli ingredients that I bought the day before my ER trip and my recipe to make me a lovely big vat of refreshing, easy-to-eat tabbouli. Lulu ran around and caused joyful sparkling creative chaos. Freyja is an expert crawler and puller-up and is a solid chunk of personality. She roars, in a conversational way, all the time. She waves. She grins. She wants desperately to walk! It’ll be very soon now and she’s only 8 months old.

No trampolining for Lu today cause it was alternating rain and hail!

I felt so blue last night that I called Chloe, just to cry on her shoulder through the ether. It really really helped. She knows how to listen and is such a comfort. We always call and cry on each other when we need to. We’re the best, closest cousins ever. <3

Home again. Let’s hope I can go more than a week without another ER visit. too tired and headachey to write much. It was same old same old — probably SVT (my suggestion and pulmonologist agreed) but the ER doc didn’t diagnose properly and made things worse. Beyond exhausted and seriously fed up with living inside a booby-trapped body.

Oh forgot to say last Wednesday at cardiologist they stuck a cool little heart monitor called a Zio Patch to my chest. It records my cardiac activity and I’m supposed to wear it for two weeks.

Can you guess where this story is going?

Remember my good ol’ adhesive allergy?

By the very same evening my skin was already burning. I put up with the pain (and good thing I did, because it will have recorded my entire cardiac episode on Thursday) and left it in place till I got home from hospital today. Three whole days. I could no longer tolerate the intense pain. Ripped it off. God. My skin looks like I’ve had a tragic chemical burn. It’s bright red and puffy and throbbing and burning.

Good times.

Still in ICU but stable and comfy. Too tired and headachy to write more for now, but please know that I’m safe and recovering and might get to go home tomorrow. Xxx

ER again. Same thing

Saw my new cardiologist, Dr Aldweib, today, finally! Several people warned me that he was “blunt” but I’m blunt too so to me he seemed straightforward and comforting. I don’t like fluff. We went over my whole history. He wants to run some tests to figure out why I got PH in the first place, which no one ever did before, and he says there are medication options that could extend my life a bit more. He didn’t argue when I said I don’t want a heart/lung transplant. Good, good.

Omg tonight I finally got around to starting “The Great” on hulu, which is a dark dramedy series about Catherine the Great. I wasn’t expecting much, figured I’d watch half an ep and cross it off my list but DAMN! It’s GREAT!!

It’s very loosely based on actual history, and in fact there’s a banner at first that says something like “some of this is probably true”. I respect that. The writing is razor-sharp. The characters speak like 21st century English people, which is so much better than trying to use olde timey dialect and failing miserably, which seems to be the standard for period dramas.

The cast is delightfully multicultural, even if the characters are not. Know what I mean? Like, the Black and Asian actors are playing Russian courtiers and it feels so much better than if they tried to shoehorn in some Black and Asian characters. Natural. They’re all just people.

The acting is beyond superb. The costuming, while probably not accurate to 18th century Russia, is cohesive, well-designed, and makes good sense. The women are obviously wearing the correct underpinnings and enough shifts and petticoats to fill out their skirts correctly (I’m looking at you, Guilded Age). Sets and scenery are gorgeous.

Absolutely cannot wait to watch the second ep tomorrow.

Slept till 9am and felt so much better today! Almost like my normal (abnormal) self. I did a little bit of light housework. I plugged my car in so I’ll have a full charge to drive to my cardiology appt at OHSU tomorrow. I knitted a lot, listened to audiobooks and podcasts all day. Not too much screen time. The “You Must Remember This”podcast has started a new series about the rise of erotic films in the 80s (as always, from a staunchly feminist perspective) and the first episode was GREAT! Can’t wait for next week.

http://www.youmustrememberthispodcast.com/episodes/porno-chic-and-the-brief-heyday-of-x-ratings-erotic-80s-part-1

Ugh I really miss Dave. Hope he gets that truck loaded soon, but now he‘s not feeling well, and he‘s living in his industrial unit which is the opposite of cozy, poor guy.

Recovering slowly. Still so tired. Did a little knitting today, and a little sewing after I picked up my serviced and polished and waxed Singer Featherweight from Pam at PDX Vintage Sewing Machine Repair. It sews as smooth as silk now. It’s lovely.

So tired. So blue. Too many screens today, too, and I’ve got that horrible too-many-screens queasiness.

Mostly I did nothing today. Drank a lot of apple juice.

Much better! Booster shot symptoms on the wane. Still, I stayed in bed and rested all day. Watched the first three episodes of the new Julia Child bio-pic (bio-series?). Very enjoyable. And I started knitting a complicated pair of socks! Here is the pattern:

https://ravel.me/the-gardener

Cables and eyelets and twisted stitches and vines and buds and a big spider on the back!

Stayed in bed and rested all day. My 2nd booster kicked my butt. Bad arm pain for many hours, then body aches, then chills and nausea, then headache, with bigtime fatigue all day too. Happy I have my cozy bed and my audiobooks. I bet I’ll feel a lot better tomorrow!

I’m home, I’m home, I’m home!

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!

The ICU nurses here at OHSU are amazing! They treat me like an intelligent adult and explain everything. I’m in very good hands.

After I got here yesterday they ran a bunch of labs, which all came out great except that my potassium is very low. This morning the result of my magnesium test came back also very low. Either one can cause all kinds of strange problems, including heart and respiratory issues, so even if it turns out that this isn’t the main problem it certainly didn’t help.

The food here is amazingly good and fresh and real! There’s a menu with a ton of interesting choices. Not your typical hospital food at all.

I slept the way one sleeps in a hospital, poorly, even though my night nurse only woke me up once. Terrible night sweats. But at least I had time to pack properly so I have my eye mask and my bear and all my charging cables etc.

Today I’ll finally see some cardiology and pulmonary specialists and they will do lots more tests. I feel fine but we really need to know what happened!

Ugh it‘s 7:15am and I’m so tired.