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BATH

I’m going HOME! My ride is scheduled for noon. Hospice is taking me home in an ambulance, which is nice as I’m quite weak and I won’t need to climb up our three front steps. Henry, Dave, Jayla, and the baby are waiting for me there. My wonderful nurse Evan and his student Brennan have just taken off all my monitors and removed all my IV ports. I’ll be home in an hour, probably!

I will have a BATH, the longest deepest bath ever. I will sit on my own sofa and drink from my own water bottle. I can do my embroidery. CLEAN FRESH CLOTHES. I can squeeze the baby and watch her run around naked in the yard on this hot day. Thinking of getting UberEats to bring us Japanese food for lunch in celebration — California rolls are light and cool and not too salty, and everyone else can enjoy ramen or teriyaki or whatever. I’ve gotta watch the salt, boo. I love salt. But I hate being full of fluid so it’s ok.

Is there anything better than going home to the people who love you? Sixteen days in the hospital. Man. But that’s it. Never again, never again.

Ach, tough news. Docs predict I have mere weeks to live. I thought it would be a few months, but such is life. So. That’s how it is. It was hard to hear, but honestly after I had a good weep or two my mood changed and I feel really cheerful. I’m gonna go home tomorrow because there’s no point in staying in the hospital any more. I’m lining up a Home Hospice company.

I’m ready to stop struggling to stay alive. It has gotten so difficult. I feel bad for my loved ones of course. I’ll be having the Long Dreamless Sleep but they will miss me so much. Everyone has plenty of handmade keepsakes and quilts and my homemade audiobooks to remember me by. I can read to them FOREVER, how great is that? And there are my clever, beautiful granddaughters, one of whom has my lanky body while the other has my exact wavy red hair :D

I’ve ordered a big salad for lunch because I no longer need to worry about maximizing calories. So there.

Henry has purchased me a copy of Tears of the Kingdom so I can get stuck in right away!

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.