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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.

Guess who’s in the ER. Again. With a mystery problem that no one can figure out.

Felt great yesterday and sewed for hours! In the afternoon I lay down for a rest as usual. All of a sudden I felt my blood oxygen levels plummet and heart palpitations start up. My o2 was low, scary-low. A normal healthy person will be at 98-100% oxygen saturation. I am typically at 92-95 when my o2 concentrator is giving me three liters per minute. When this started up yesterday I was at 77-82%, which is frightening and can be deadly. I cranked my machine up to 5 lpm and managed to stay in the low 80s. Eek.

Henry et al came over and he moved my livingroom machine closer to the bedroom and cranked it up to 5, and I put both cannulas in my nose for TEN lpm. And managed to hover around 86-90, as long as I stayed still. When I got up and moved around it dropped into the 70s again. Eeeeek.

Took my diltiazem in case it was the beginning of atrial fibrillation. No effect.

Hoping sleep would cure me, we all went to bed. Lulu slept near me on Dave’s side of the bed (he’s still in the Bay Area loading his truck)

This morning I was no better. Argh. So Henry called 911 and a team of majestic EMTs checked me over and loaded me into the ambulance.

Now I’m hanging out in the ER. I’m actually feeling a lot better. No palpitations for a few hours, and my o2 sats are better. Close to normal, even. In the hours I’ve been here they’ve run ALL the tests. They thought it might be an odd heart attack but then ruled that out. They have no idea what’s wrong with me, lol. I am a Scientific Oddity as usual.

They’re talking about sending me to the university hospital (OHSU) where there are specialists who understand PAH, but they didn’t have room earlier when I asked the EMTs to take me there.

Oh! Turns out that hospitals here in Oregon have a garage for ambulances so they don’t need to unload patients in the rain and snow! In California they just pull up to the curb because it almost never rains. It never occurred to me that places with weather might do it differently!

Anyway, I’m alive and feeling much better. Fingers crossed they either send me to OHSU or let me go home, if I remain stable…

Doc just came in and said she’d conferred with multiple specialists and they think it might be acute right heart failure. Argh. So they’re sending me to the ICU at OHSU. I’ll keep you posted when I can.

Yuck.

I actually felt pretty ok today! Much better sleep. I took 10mg of THC last night because I was desperate for a good night of sleep and it worked.

My Featherweight is still in the shop, but today I had enough energy to cut out all the pieces for a beautiful new dressing gown to replace my ancient tattered ugly fleece one. I’m using a thick luscious cobalt-blue cotton/linen waffle weave from fabrics-store.com. It’s going to be so cozy and warm! The pattern is the discontinued Suki Robe from Helen’s Closet. The pattern was discontinued for a very good reason which you can read here: https://helensclosetpatterns.com/2021/03/26/dressing-robe-pattern-update/

I even felt well enough to drive up to the city to meet Henry and family when the Honda’s battery died! I drove Jayla and the littles home and then Henry and I went to buy a new battery and then I took him back to the dead car. He installed the new battery and the car started right up. *whew*

Ran errands in the morning. I love how conveniently-located our house is! Our actual street is a quiet dead-end, but driving about four twisty lomg blocks to the east leads you to a nice main street, McLoughlin, with most of the shops and things I’d ever need — except Trader Joe’s, a fabric store, and a yarn store, all of which are an easy 15 minutes away.

First stop was Fred Meyer, a huge grocery store with a pharmacy and more. Got my prescriptions, some peanut M&Ms, and some black raspberry ice cream, which I love but simply doesn’t exist in California. I remember it from when I lived in the midwest as a toddler, believe it or not.

Then across the street to BofA to pay my credit card bill. Then down the street another block to pick up a burrito from the excellent hole-in-the-wall Rigoberto’s, then another block to drop books at the library, then around the loop and home again. We also have an Ace hardware, a good pizza place, a family ice cream shop, an independent donut place, a Goodwill, a Harbour Freight, and all the little things like tire shops and weed dispensaries and whatever. Easy.

I spent hours watching the birds at my suet feeder. There’s a pair of Northern Flickers that I just adore! They’re unusual and beautiful: tan, with black speckles and a curved black bib. Bright orange cheeks. When they fly you see a flash of cantaloupe-orange from the underside of their wings and tail. They’re rather large woodpeckers— bigger than a jay but smaller than a pigeon — and incredibly shy. If they see me make one tiny move through the glass door they are GONE.

Beautiful Spring day! Gentle sun, pleasant breeze. Right now I’m lying on my bed in the sunshine (we have a south-facing window above our heads) with the door to the back yard open. I smell freshly-mown grass and I hear what sounds like hundreds of birds singing and chirping away, and also Mom playing Bach over FaceTime for me. A brave squirrel has just grabbed a few mouthfuls of the suet-and-seed cake in my bird feeder, which hangs right in front of the door. She had to dangle by her toes to reach it and my presence made her very nervous.

Bugs are flying in through my open bedroom door. I don’t mind, but I’ll ask Dave if he can install a screen door before summer so we can sleep with the door open. I doubt he will approve of wildlife joining us in the night lol.

Earlier I went out to the back deck to pot my pea seedlings (and some that are either zucchini or sunflowers but I forgot to label them) and got ambushed by Talkin’ Jim. He and his wife are the previous owners of our house. We wanted a quick closing date so we said they could live on the property in their RV until Jim had time to clear out the enormous (six-car) workshop. They’re extremely nice people but oh my god do they TALK. So I disappeared into the house until Jim went off to do something else and THEN I planted my seedlings :D

The workshop is finally empty and Dave will be bringing a truckload of woodworking tools back from CA in a couple days, so very soon I hope to be able to enjoy my deck and yard without needing to talk to anyone.

Headache mostly gone but slept badly and felt super-fatigued all day. i never sleep well when Dave is out of town. My subconscious probably misses my Protector Man, plus my RLS comes back when he doesn’t give me a world-class foot rub at night.

The kids came over! Henry made sandwiches: cream cheese, cucumber, and tomatoes on rye bread (inspired by Albert‘s lunch in “Bread and Jam for Frances”) and he made extra sandwiches for me to have handy in the fridge, and he cooked a dish of chicken sausage, broccoli, and noodles and left plenty of leftovers in my fridge. Dearest dearest Henry *heart eyes*. There was much jumping on the trampoline. I discovered that I can lie in my bed and watch them through the door in my room that leads to the back deck!

When they left (3-ish) I went straight back to bed. Watched another episode of the Swedish version of Taskmaster (Bäst i Test) which is really good! And then I put on channel5.com and watched a documentary about Broadmoor and then one about the Great Plague of London (1665-66). Ah yes, a big dose of criminal insanity and pestilence to soothe me to aleep :D

I remembered I had to pick up meds for Dave (he’s out of town) so by the time I did that, picked up a pizza, and dropped off my library books, I was exhausted and done for the day. Not feeling so great the last few days. Still haven’t really shaken that headache all the way. Ah well. I’ve lain here all afternoon and got caught up on The Guilded Age. Fun show, but the costumes are lolwut? A lot of really weird gowns that make me wonder what the costume designer’s brief was. “Make it look sorta a little bit like the late 19th century but be sure not to do any research into what people actually wore” ??

The corset and bustle shapes are so random!

Lying in bed, lazily planning my day. Need to return books to library and pick up holds and maybe get some more seeds from the seed library. As long as I’m out, I’ll pick up something calorific to eat, burrito or pizza — or both! After that, if I have any energy left over, I might plant some seedlings outside or take a scissors out to the back yard and cut down the dead raspberry canes. I’m assuming that’s the right thing to do to keep the live ones healthy but I have no idea. Where’s Ben Weatherstaff when you need him?

Alright. I’m getting up now.

Slightly headachy when I woke up but it faded after a few hours yay! My lovely family came over and we enjoyed the warm Spring sunshine in the back yard. Much trampolining occurred. Even I climbed up and sat on it while they bounced me! Freyja sits squarely on her bottom and has learned to wave *heart eyes*

Woke up in the middle of the night with a migraine. Felt lousy, stayed in bed and did nothing all day.