kayray.org

Good morning. I’m hungry, waiting for breakfast to arrive. Yesterday’s menu exploration went very well — a little cheese pizza for lunch was fresh and very tasty, and for dinner I had grilled salmon with roasted red potatoes and a side of spinach. I opted for spinach because the fish came with a lemon wedge and lemon is perfect with spinach. Now we’re not talking a $30 restaurant entrée here, but it was fresh, well-cooked, and tasty! I should have ordered more veggies because I was hungry in the night.

Also my damned MALE night nurse woke me up several times by opening the squeaky door to check on me, despite my doctors’ Do Not Disturb orders, and my plea at bedtime not to. Man did I chew him out when I caught him. I emphasize “male” because guess who didn’t think they knew better than my doctors? Guess who was respectful of my need for uninterrupted sleep? Guess who prevented phlebotomy from waking me up early for labs? Every single female night nurse, that’s who.

Ordinarily the guys are just as awesome as the women. Aaron is just a dud. Hope I don’t have him again tonight.

Dave visited me yesterday and brought clean clothes YAY! Omg the smell of clean laundry. I was so wiped out yesterday that I thought I’d need to send him home right away, but I had forgotten that he doesn’t tire me out like other people. He is restful for this introvert to be near, and it made me feel better to be with him. That’s why he’s my person! Silly me. He stayed for a few hours and we had lots of good time together. He’s not a prolific texter and I’d rather die than talk on the phone, so we had a lot of catching up to do. Oh it was good to see his darling round face again.

I had a good long sleep last night and am starting to feel more like myself. I still have tons of fluid around lungs and belly, so I’m still puffy and short of breath, but it’s getting better little by little. I was able to eat two 4oz bowls of cream of wheat for breakfast, all at once! A couple days ago I couldn’t eat more than two bites at a time. My belly is still distended and gross (fluid) but we’ve flushed out enough that my stomach has a bit more room.

Today I can imagine feeling well enough to go home someday soon. I’ve been sitting up all morning. I did all my breathing exercises and a whole round of leg exercises!! So weak, have lost all that progress. Sigh.

Working on weaning down the supplemental oxygen. We cranked it down from 5 lpm to 4.5 this morning and I’m doing ok. Will try for 4 later.

Last night’s dinner was so good. I ordered the mac and cheese, with my fingers crossed… and it was great! Not Kraft, not orange, not mushy. Good flavor, good al dente texture. Sprinkle of crunchy breadcrumbs on top. I might risk the pizza for lunch… the only food I’ve had here that sucked was pancakes. Inedible disks of rubber.

And of course the cheesecake. I don’t think I’ve mentioned the cheesecake. I don’t like baked cheesecake, and I don’t like the kind with whipped cream folded in. They have the GOOD cheesecake here, chilled, tangy, not too sweet. I went researching recipes and I think the secret might be cream cheese plus sour cream plus gelatin. I have a recipe to try when I get home. I’ve been having a slice with every lunch and dinner. Drool. It makes such a big difference to have genuinely appetizing food to look forward to!

They have a big selection of steamed veggies too, and you can order exactly the ones you want and they PILE them on a plate! Broccoli, spinach, kale, carrots, green beans, peas, corn. I usually order three kinds with lunch and get a mountain of veggies to work my way through all afternoon. And they have real mashed potatoes. Not instant. There are little lumps of potato, and they’re using something like Yukon Gold or Rose, I think. There’s that touch of sweetness you don’t get with russets.

For breakfast I always get cream of wheat and a fruit and yogurt parfait, which is beautiful strawberries with thick yogurt and excellent granola, on the side so it doesn’t get mushy.

I think I’m getting hungry, heheh.

Forgot to say i have some mild Hospital Delirium, which is caused by sleep deprivation, lack of natural light, messed up circadian rhythm etc. First night I was in regular room after five days ICU i woke up middle of night no idea who I was or where I was. Utterly terrifying, but it passed. The freakish exhaustion, brain fog, and Jupiter gravity was part of it too. Yesterday it was gone, but Dr Sam told me it could come back in waves and not to worry if it does.

Brain fog and Jupiter gravity are back today. It’s ok. It’ll pass.

Belly still distended but on the mend. Was able to eat entire breakfast of cream o wheat, strawberries, yogurt, granola over 45 minutes. Still flushing out liters of extra fluid.

Turns out it wasn’t Constipation From Hell. I had a little constipation, but the main problem was actually buckets of fluid retention in my abdomen. BUCKETS. I’m on big powerful doses of diuretics now and have been peeing liters more fluid than I take in. Literally. Today I peed 2 liters more than I drank. I mean, they do all the math so if I drink a liter and pee three liters it’s 2 liters more than I drank. I’m tired. Hope that makes sense. Anyhoo. Belly pressure is easing little by little. Exhaustion is down to regular hospital exhaustion levels. Listened to podcasts and audiobooks all day. Heart rhythm good, bp good, o2 good at 5 lpm.

According to my sweet Night Nurse Emma, I have a great attitude and it’s a pleasure to take care of me. :)

Lay in my sunny window for a long time today.

Moved out of ICU to normal room midnight last night. No monitors, no wakeups, quiet as a church.

Still feeling rotten. Bad belly. Frustrating. Such exhaustion. Feels like I’m on Jupiter. Too much effort to write .

Yesterday was so awful, just so awful in so many ways. Besides EVERYTHING ELSE I’ve had Constipation From Hell since Monday. I blame severe dehydration caused by a combo of diuretics and not being allowed to drink anything for… 12? 18? hours. Not sure how long it was but I was so parched I could scarcely speak.

Also on top of THAT we tried titrating up my Remodulin dose, which always causes a couple weeks of severe side effects. So those started up last night and were so bad I pled to go back to my regular dose, which they ok’d. We’ll try again when I’ve been home a while and my general discomfort is less severe.

Anyway. Today has been better. Constipation is easing. Allowed to eat and drink at will. Heart behaving. Lungs less janky. I’m off the horrible high-flow oxygen machine and back to a regular nasal cannula, and I’m only needing 7 lpm. At home I use 3-4 lpm.

And best of all a lovely doc said they could unhook all the monitors and even the bp cuff and pulse/ox. See, last night I had kind of an Episode of Awful (see: titration) and I summoned them immediately to tell them I needed more o2 and my heart was racing. So I think they trust that I will tell them if things go wrong.

He said something like, when they watch the numbers too closely in an unusual patient like me, they might try to fix stuff that isn’t broken because what’s normal for me is abnormal for everyone else.

This is the BEST HOSPITAL. Staff is uniformly excellent. They let me wear my own (filthy) clothing. They didn’t confiscate my Bag of Meds. The food is pretty darn great. This was the first day I was able to eat breakfast and I had cream of wheat and a fruit-yogurt-granola parfait. So fresh, and everything is obviously made to order.

I’m supposed to eat small bites of lots of different foods to help my poor belly so last night I asked for two slices of multigrain bread, two slices of jack cheese, and a side each of spinach, peas, and rice. Nothing frozen, all high-quality. Not disgusting grocery store bread. I could only eat a few bites of each thing but I kept working on it all night long.

It’s frustrating that I could move around if I wanted, but I’m too exhausted to do anything but lie here and nap. I did manage some gentle stretches this morning. That’s better than nothing.

Time has no meaning. Still alive. Still in ICU. Still miserable.

Too tired to make sense

Electric cardioversion seems to have fixed my heart rhythm?

Didn’t sleep last night. Up to pee every hour and if I did fall asleep my o2 fell and the monitors beeped and woke me up. Gah!

Spent most of the day waiting, as one does at the hospital. No food, and worse, no water all day. After much discussion we decided to try to fix my atrial flutter with stronger meds first (ibutilide) then shock tomorrow if it doesn’t work. One of the potential side effects of ibutilide is cardiac arrest, lol, so I had a whole squad of docs and nurses standing around ready to intervene during the 15-minute IV infusion.

They started me on a half-dose because I’m little. It went fine and I definitely started to feel better, but my EKG was inconclusive so, after waiting around for 1000 YEARS, we tried against with the other half. Still feeling better, EKG still inconclusive.

So now I finally finally finally get to eat and drink. They’ll let me try to sleep tonight and reevaluate in the morning. No food or drink after midnight again so I’m hoping to eat at least two dinners tonight. Dinner number one should arrive in less than an hour: chicken soup, grilled cheese with tomatoes on sourdough, three little helpings of pineapple, and two little cranberry juices. (You’re allowed 7 things per meal — one entree and six little sides and extras)

Hoping to order Second Dinner when First Dinner arrives, so I can order before I get full. Probably another cold sandwich because it’ll still taste good if I save it to eat at the last minute. Or PIZZA.

Can you tell how hungry I am?

I’m trying not to drink too much water because I don’t want to pee all night again.

What’s with randos texting “hi”? What on earth can they possibly hope to gain? Go away.

Hello from the OHSU Cardiac ICU. My symptoms didn’t improve overnight so I asked Dave to drive me to OHSU early this morning. They’ve run lots of tests but nothing unusual is popping up so the theory is there’s just too much fluid in me and it’s stressing my heart. So it’s diuretics and endless peeing for me, unless they can think up a better strategy. Frankly, they seem perplexed and have asked me if I have any theories. Lol.

I was in the noisy bustling ED till afternoon but now I’m in a spacious, quiet, private ICU room with a huge window.

I didn’t eat or drink anything this morning so by afternoon I was just famished. It took forever to get permission to eat, then to order food, then to have it delivered — and right then they moved me to the ICU, with a CT scan on the way, and then there was all the palaver of getting me established with my ICU care team etc. My sandwich, green salad, cranberry juice, and three servings of fresh pineapple were just staring at me! But after like an HOUR I finally got a chance to eat and it was so delicious! Just look at this beautiful sandwich. There’s hummus and cheese on it, too, and I got packets of mayo and mustard.

So tired. I expect to be here for a couple of days.

Woke up tired. Stayed in bed all day. Heart a little too fast, oxygen a little too low. Not ambulance numbers, but uncomfortable. Hope a night of sleep will fix me.

Got another daytime false alarm! Excellent. I need to remember to keep my pump remote handy in the daytime (it usually lives on my nightstand) because the pump itself can’t tell me why it’s alarming. The remote has the display.

I did my full exercise regime including the two new ones, and I used my spirometer a lot. One of the new exercises is to stand up without using my hands to push off the chair and then slowly sit back down. Oof. Three times in a row is all I can manage!

I just watched the Antiques Roadshow (UK) nursing special and it was so interesting. Jo Brand talked about her career as a psychiatric nurse, they talked to the nurse who basically designed the whole system for caring for HIV/AIDS patients in the UK, they looked a historical nurses uniforms, they spoke to the daughter of the woman on whom the main character of “Call the Midwife” is based. I’ve never seen it, though I know it is much loved, but after hearing her described as “the James Herriot of midwifery” I am eager to try it.

They also mentioned palliative care, and that most people have never heard of it. I was one of those people till a couple years ago. My California doc set me up with palliative care but I only had one office meeting at which they basically said, “what can we do for you?” and I said “Um, what did you have in mind?” and that was as far as it went.

My Oregon doc suggested I try again and I’m so glad he did! This palliative care organization is SO much better. Nurse Adam comes to my house once a month or so. He checks all my vitals, of course, and we have a long chat about how I’m feeling, what’s going on with all my specialists, any medication or prescription difficulties, etc. He can read all the correspondence between my various docs and me, he can see all my test results and the notes from all my office visits. He is an extra brain who helps make sure all my care is coordinated and that nothing slips through the cracks. He set me up with physical therapy, and a social worker to help with my advance directive. He’s never in a hurry. He makes me feel heard and cared for.

Palliative care is designed for people with serious, complex, difficult health conditions. Terminal or not. Do look into it if this describes you or someone you love. Try to find an organization that makes house calls. If you’re in the Portland area, I recommend Signature Home Health.

Physical therapy today — a reassessment, to see what progress I’ve made, so it was someone new. The PT Bossman, Matt. He was jock-ish and bluff but perfectly pleasant; however, I preferred Kristina, Christina, and Lisa. I think I’ll have Lisa for the next couple weeks until it’s reassessment time again. Matt seemed blown away by my progress, despite my setback! He said I’m “crushing it” and that he’ll need to come up with new tests for my next assessment because I blew today’s tests out of the water. He gave me two new exercises to add to the mix. One where you start seated and stand slowly and sit again. God it’s hard. I can only do three, barely! And the other where you take sideways steps back and forth, three in each direction. That’s not so hard but it’s very tiring. I’m just colossally proud of myself.

NEW DATA in the Ongoing Saga of the False Alarms. No alarms last night. But I think I forgot to mention that when I did the factory reset, I noticed that the internal clock was set incorrectly. It has a 24-hour clock (so 1pm should display as 13:00) and it was set the opposite way, so it was 12 hours off. As I reset it I thought, in passing, huh, I wonder if I’ll get false alarms in the afternoon now? (All my false alarms always happen between about 11pm and 6am, so logically they should now happen between 11am and 6pm, right?)

Guess what? I got a frickin’ false alarm at 2:30 this afternoon!!! It woke me up from a nap but that’s better than being awoken in the middle of the night. And it absolutely proves that the fault is in the software. 100% proof. IT’S NOT ME. I’ve reported it to my specialty pharmacy nurse who says she’ll pass it along to United Therapeutics, who will of course do nothing about it. But they COULD do something if they wanted to. They have the info. I gave it to them on a silver platter.

I made the world’s best soup for dinner and it was so easy. Ten minutes start to finish.

Bok Choi, Mushroom, Ginger, and Dumpling Soup

Three cups of chicken broth; a thing of crimini mushrooms, halved; a small head of baby bok choi, sliced; a big pile of grated ginger; and a box of 6 frozen soup dumplings (pork and ginger) from Trader Joe’s. Simmer about ten minutes or until the veggies are tender and the dumplings are hot (they’re pre-cooked). All the veggies and the ginger were from my organic veg box. Dave and I WOLFED it down! He said it reminded him of soup he’d had in China!

I reached 800 days of Finnish lessons in Duolingo a few days ago, btw. Olen ahkera nainen.

No pump alarms last night. Coincidence, or the result of the factory reset? Time will tell. Not getting my hopes up. I was awake for a while in the night wondering if the alarm was about to go off. Thanks brain! But then I slept till after 8 and wasn’t really UP-up till after 10. Dave slept better and had a long lie-in too, so we both felt pretty okay today.

I picked up the neckline stitches of my boxy cropped pullover and knit a nice little V neck in 1×1 twisted ribbing. Then I wove in my ends, soaked, and blocked. Should be dry in a couple days and ready to wear.

The Bay Area family asked if they could stay with us if they come to visit during Spring Break! Yes OF COURSE! Very exciting. I hope it happens. I miss my little Em, though she’s not so little anymore. Almost ten and nearly as tall as her mom.

I need a new portable crafting project! Or two or three. Maybe tomorrow I’ll try my Sticky Solvy idea.

I tried on my pullover over my March dress and it’s PERFECT! Perfectly perfect! I’m thrilled. So I knit the waist ribbing and the sleeve ribbing today. Tomorrow I’ll do the neckline ribbing, weave in the ends, and block it! Pics soon, if I can get a good one.

We are all caught up on the Pottery Showdown. This episode was sinks and tiles. Don’t know why they gave James “potter of the week”. We liked Jon’s so much more than anyone else’s. It’ll be wild if he ends up winning.

I read a chapter of P&P to Dave tonight for the first time since I got sick before Christmas! Lizzy and the Gardiners have just been invited to dine at Pemberly :) And then we watched the first episode of Friday Night Dinner, which I love and hoped he would too, and he did! He thought it was hilarious, yay!

Did a factory reset on my stupid Remunity pump and remote. I doubt it’ll help but I guess there’s a tiny slim remote fraction of a chance…

We missed several episodes of The Great Pottery Throwdown while Dave was out of town so we’ve been catching up over the last few nights. We’re watching the quarterfinal episode now (radically altered coffee sets and porcelain rice bowls). I think Caitlin has a good chance of winning the whole thing, but everyone is lovely so it really doesn’t matter! Such a very enjoyable competition show. I wish Netflix would pick it up.

I knitted like an electric Nan today and got to the point on my boxy cropped pullover that it might be time for ribbing. Tomorrow I’ll try it on over my dress and find out.

Quite fatigued today so I nearly skipped my exercises but then I did them (seated), so yay me! If I have average or better energy tomorrow, and not too much pain, I’ll try to go back to standing again.

I want a new blackwork project but I don’t really want to buy any new supplies so I have what might be a cunning plan. I have some sheets of Sticky Solvy, which is stuff that feels like interfacing. You can draw or print a design on it. Then you stick it to your fabric and embroider your design, then soak it in water and the stuff dissolves away. So I’m thinking of printing a wee dot grid on a sheet of it. Then I can stick it to any solid-color fabric and work some blackwork over the grid. Maybe make some fancy hankies?

Bath, hairwash, laundry, washing up, homemade pizza! And I mended a towel that somehow developed huge torn-out holes. I cut patches of flannel, turned the edges under, and hand sewed them on both sides of the towel..

Bad pain today. Pain pain pain. It wears me down.

Two alarms last night. Asked the specialty pharmacy to send new batteries — should be here tomorrow.

It was an eating and napping day. Blintzes for breakfast, and then lunch was another slice of the pizza I made yesterday. I think I’ll eat an orange after I write this and then have the rest of my pizza. Earlier I knitted for a while and finished series five of Unforgotten, and then I just went back to bed and lay down for the rest of the day! Oh, and of course I did my leg exercises (seated, while I get my strength back) and my lung exercises. Gosh I love my Incentive Spirometer! I feel so good after that deep breathing.

Dave worked hard today at installing our new keypad door lock. I think he’s nearly finished. He had to go buy a file or something. Once it’s working, not only will I not need to fumble for my house key while juggling my oxygen machine and purse and whatever, I’ll also be able to give the code to any future EMTs so they can get in and rescue me when I have scary tachycardia events and Dave’s not home. Big peace of mind.

A friend suggested dehydration as a possible trigger for the awful SVT episodes, and whether or not it’s a trigger for me it’s good to stay hydrated so I’ve been more mindful about drinking my water lately. It’s easy to forget in cold weather.

Started a new true crime podcast! The Cold Podcast. I’m two episodes in to the first season. Good stuff.

Time to eat and nap some more! :D

Three medication pump false alarms on Tuesday night and two last night. Hmm. Maybe I need to get them to send me a fresh set of batteries?

I did my exercises seated this morning and Dave did them with me. He said he felt more alert afterwards. I hope he joins me again tomorrow. I also used my spirometer a lot today. I think my lung function is already improving. Whether it is or not, I feel really good after doing my breathing exercises, so hooray!

I knitted for 1000 hours today. Will probably separate sleeves from body on my pullover tomorrow.

Made pizza in a cast iron skillet for dinner and it was great! Rough guide — this morning I whipped up a very high hydration dough (1.25 c water to 2.5c flour, plus yeast, salt, brown sugar) and let it sit around on counter all day to develop flavor. Heated oven to 450°, heated cast iron skillet on medium burner, oil and cornmeal in skillet, stretched lump of wet sticky dough out and patted it into place in hot skillet, topped with mixed herbs, sauce, slabs of fresh moz, sprinkle of parm, popped into oven, baked for 15 minutes. Very very tasty! Plenty of dough left in bowl in fridge for a couple more pizzas, too. Henry recommends using the broiler.

Yesterday afternoon I did my full page of leg exercises for the first time since the scary tachycardia thing on Saturday night and it absolutely wiped me out. I had to go right to bed and sleep for a couple hours and I never did really wake up all the way.

This morning Physical Therapist Lisa came over and was so kind and encouraging! I’d been feeling awful about needing to skip my exercises but she said not to worry or feel bad, I won’t lose all my progress and I need to listen to my body and only do what’s comfortable. She made me feel so much better and more hopeful! She showed me how to do all my exercises while seated, which saves a lot of energy, and she showed me how I’m still exercising the same muscle groups but not fighting gravity. She also brought me an incentive spirometer to strengthen my lung function! It’s great!

I finished Henry’s cardigan! It’s blocking now. And I made good progress on my new pullover.

Needed a nap this afternoon again, still very much in recovery mode, then spent some happy hours watching the new season of Unforgotten.