kayray.org

Writing early before my Stamina meter goes empty.

Pretty good sleep. Done with antibiotics thank goodness. The nausea should be back to normal levels. Hoping gut flora will grow back soon, ugh. Sipping my hospital prescription kefir — 56 billion probiotics!

I’m still full of fluid. Not only abdomen but legs too, this time. It was really bad a couple days ago but I had big doses of IV diuretics yesterday and I’m down a whole liter! But I still weigh nearly ten pounds more than normal so we’ve got a while to go.

Good news, Dave’s angiogram went well. They found a big blockage and put in a stent. Sounds like he’s feeling much better. He says they’re talking about sending him home soon which, if he is basically self-sufficient, will make everything so much easier, care-wise. I’ve had to get care-givers on deck in case I went home before him, or we were both home but in bad shape. We shall see what the coming days bring… can’t make concrete plans yet in any case.

As soon as he gets home and can bring in packages, I’m gonna order myself a physical copy of the new Zelda game, Tears of the Kingdom. I’m hearing rave reviews and it sounds like it will be fun for those of us who aren’t into combat so much. Very excited to have this to play while i rest and heal.

Eager to feel well enough to get back to my blackwork embroidery, too. Not there yet, but maybe in a few days.

I think the plan for today is to rest and get rid of more fluids.

I got some sleep and am feeling so much better today. My heart and lungs are behaving. Sinus rhythm, home levels of o2. I sat up in a CHAIR for a couple hours, reading. First time I’ve been able to read in two weeks. I am, however, still retaining fluid like crazy. Big fat puffy legs and feet. Yuck. So we’re upping my dose of diuretics today, by a lot, which should help.

Today is my final day of antibiotics. Food tastes nice again. Kind of tired now from sitting up so I’m back in bed listening to podcasts and doing the crossword. I am hanging in there. Dave is having an angiogram right now to see what’s wrong with him…

Still alive, exhausted and suffering from antibiotics but generally doing better

I’m in a real room again! Today was diuretics and antibiotics. Same plan for tomorrow and Sunday. Feeling much more human.

I am down to home levels of oxygen! My heart is in sinus rhythm! I’m sitting up in a chair! My legs are swollen bigly with fluid, so I’m looking at a few more days of IV diuretics, but I get to move to a normal room as soon as one opens up, YAY!

This is still, ya know, my final hospital visit, and it will be home hospice before too long. But my docs are thrilled by how I’ve bounced back. They can’t believe how tough I am. So maybe there’s a bit more time before hospice care.

Dave is in the ICU now too with fluid around his heart and I don’t know what else because he doesn’t have a phone charger. Different hospital, argh! We are QUITE A PAIR.

Thank you for all the messages of love. Yes, my time here is growing short but I’ve had YEARS more than anyone ever expected and they have been interesting years! Lol. I feel like the previous two years or so have been the best yet. Great mental health. Comfortable, quiet, calm life. Amazing stable loving relationship. And now I have a little extra precious time to spend with my loved ones (and reading, and crafting, and sitting in the sun, and listening to the rain).

A wonderful palliative care team stopped by yesterday to hear all about everything and find out how they could help. I asked if they could set me up with a home hospice who’d bring a therapy pet for visits. I wish so much for someone furry or feathered to spend time with. And I explained a tricky family dynamic, and they agreed with me that I don’t need to manage anyone else’s feelings! Not. My. Problem.

Heart seems to be in sinus rhythm as near as they can tell. No cardioversion planned! More antibiotics, more diuretics, more observation, then eventually home maybe Sunday or Monday.

We’re out of treatment options. I spoke to the palliative care team and told them I don’t want to come back to the hospital. There’s just no point anymore. Visits are more frequent, of longer duration, more torturous, and of less efficacy. It’s time to call it a day. They’ll set me up with a hospice team whom I can call instead of 911 next time this happens, and they’ll come over and make me comfy at home.

Not sure how much time I have. Does anyone? I should think a few months, with luck. Plenty of time to spend quiet time with family, goof around online, do some knitting and embroidery, bake a few cakes, read some great books… all the things I love to do :D

Slept ok. Thank science for my Foley Catheter. It’s my best friend. Never need to get up to pee!

Yesterday they discovered a little pneumonia, so I’m on IV antibiotics for that. Good. It’s fixable. Also on IV iron for anaemia. Also a fixable problem. Other than that we watch and wait and wean down the oxygen. Not sure if my heart is in sinus rhythm or not. If not, maybe one more try at cardioversion tomorrow. Other than that we’re out of options. That’s ok though. They’ll let me go home anyway, once my o2 requirements are better, with Big Anti-Arrythmia Drugs, to spend some more quiet time with my family. :)

Had Ativan yesterday for antibiotic nausea and it knocked me flat! I still feel it. That’s the good stuff, damn. My nurse only gave me 1mg. Today we‘ll try .25mg lol.

Nearly every nurse says, “I have that eye mask! It’s the best!” https://mantasleep.com/

Also nearly every nurse, doc, and technician whom I see regularly tells me I have an amazing character/attitude. It’s so nice to hear. My respiratory therapist said “don’t ever change” :)

Still waiting for a Therapy Pet to show up. My nurse is going to check on that.

Yeah that was a very bad few days. Back in the ICU with low low oxygen. But it’s a bit better now, if far from my norm, and I feel less crappy and more perky. Got some decent sleep last night. I just stood up for a little while.

Too much

Ordeal

Now they think it might just be tachycardia. More observation. Hard day.

Flutter is back. No plan yet

Still alive! In recovery room.

Yay! My cardiac ablation is scheduled for 10am tomorrow. Couldn’t ask for a better time-slot.

As I said, it’s very low risk — but they are monkeying with my heart, after all. So if something terrible happens to me, please remember — get some fresh air, grow a plant, eat less meat and more veggies, create something, read to a child, and be excellent to each other <3

Briefly checking in. Heart ok overnight but jumped up again this morning — hovering around 113 with some 120 and a few quick visits to 150. Ugh.

Plan: they’re trying to schedule me for an ablation tomorrow. Or early next week if they can’t squeeze me into the schedule sooner. I’ll be safe in the hospital till then. For the ablation I’ll be in twilight sleep for three hours while they thread a catheter into my heart and attempt to cauterize the faulty electrical circuit. I’m not worried. It’s very low risk, especially since I won’t be fully anaesthetized.

So weary. Being out of ICU is wonderful in many ways but it means they woke me up for vitals every four hours *eyeroll* I managed to get Do Not Disturb orders placed for tonight.

Yesterday and today I watched the first four episodes of “Love and Death” on HBO. It’s GREAT!!! Can’t wait for ep 5 next Thursday.

Long day

I’ve had an extremely horrible 24 hours in the ICU. Great care team, crappy situation. Torture of so many kinds. ‘Nuff said.

However, after waiting and waiting and waiting, and being denied water, I was finally cardioverted again almost 2 hours ago. After I dozed off the mild anaesthsia I felt so much better! I ordered food and drink! My brain has enough power to text my family!

Now we see if it sticks this time. My heart is still in sinus rhythm. Fingers crossed it stays that way.

4:30am, writing from hospital. At ten pm my heart rate jumped up and my oxygen plummeted. Dave drove me to OHSIU at about 1am. No waiting, straight in, all the exams and bloodwork etc. Atrial flutter again. I was more stable than the last time I came in so after some discussion we just went for electric shock cardioversion right away. Sedation is risky for me so they went light and I thought I was awake, if loopy, the whole time. Reader, I was not. I had to ask if they’d done it. They say I said OW! I have zero memory of anything.

My flutter is gone, my vitals are back to normal. Sinus rhythm, 92 bpm, 82% on 3 liters, 101/66 !!!

So hungry. Looking forward to hospital breakfast! (No sarcasm, the food here is great!)

Update: went back into flutter at 6:40am. Not sure what the plan is. Ugh.

Homemade pizza fail! It started well, crust started cooking in cast iron skillet on stovetop, then baked in oven for a bit, but when I switched the oven to “broil” I forgot that our oven won’t let you just switch modes. You need to press START again. So I sat on the floor watching it cook a little bit (residual heat) but not finish, and then I realized. And of course I should have done BAKE for a while again first but I was flustered and went right to BROIL so then the top was beautifully cooked and the crust was raw in the middle. So then I put the skillet back on the stovetop to see if I could get the crust to cook a bit more, and it burned a bit on the bottom and stayed raw in the middle. Lol! Well, honestly, it was still edible, especially the lovely tomatoey-cheesey top. Even bad burned raw pizza is still pizza.

Why so sleepy? Why?

Dave went to a big gathering of local guilds where he literally chatted with people all day (my idea of hell, his idea of heaven) and I stayed home in the quiet to read and nap. That’s what I did today. Finished “Downfall”, a thriller by Mark Rubnstein and listened to many many chapters of “House of Pain”, non-fiction by Patrick Radden Keefe about the Sackler family and the opioid crisis for which they are responsible. The first 15 chapters were mostly biographical, with hints of shady pharmaceutical advertising even back in the distant past. At chapter 16 all hell broke loose when we reached the story of how they shoved Oxycontin through the FDA approval process and then sent an army of sales reps out to push the stuff… my god. They knew full well what they were doing. They gave out free 30-day prescriptions. The lies. The greed. The arrogance. Honest to god it’s Nazi concentration camp levels of evil, no exaggeration. I’m having a hard time wrapping my head around this much evil. I need to switch to something lighter before bed or I’ll have rage nightmares.