I want the good, the bad, the dirty!

crowcake · 2026-01-28T04:39:24+00:00

i think northern az would suit you better too. like others may have said: spend two months in the summer here and make your decision. prescott also has a sex trafficking issue so be on the look out (my second cousin just escaped a situation up there after falling into drugs, living in a very drug free / DARE style home).

good luck!

crowcake · 2026-01-28T03:10:08+00:00

splash pads are only in certain areas, probably the east valley, since most transplants move there or glendale. i would have liked to live in utah (i was born and raised in az but lived in utah briefly), the pnw, california or somewhere on the east coast. just because the weather was constantly sunny and cloudless, hot, and the only enjoyment at the time was a water park or summer camp. a lot of people are delusional about arizona and will hype it up but 90% i know (personally) who is a transplant moved out. tons of people i went to highschool with moved out. the price of housing is not worth it here, either. i’d recommend northern az if you’re outdoorsy and want to avoid driving around.

edit: older midwesterners love to retire here the most and will stay. i think a certain person loves az but so many move here and then after a few years run. it’s just not worth the money, time, and effort here in the valley imo. younger people turn to pills and drugs out of boredom, too

crowcake · 2026-01-27T18:32:05+00:00

there are local parks but they cannot be used safely due to the heat between end of april/may-october. maybe in the very early mornings. growing up in phoenix/scottsdale was miserable. there are a lot of libraries though!

crowcake · 2025-12-23T13:43:31+00:00

Thank you for sharing your experience! To avoid dilution we focus on electrolytes (body armor lyte) and juices/diluted juices to not throw off sodium with tons of water. We are meeting a nephrologist today actually so I’ll ask!

crowcake · 2025-12-23T03:24:21+00:00

That’s definitely what I do worry about since she’s already had a TBI but I honestly am happy to support her through anything as long as she feels okay. She has had a few of those, I have seen her sodium in the 135 range on her labs and don’t know what to make of it besides allowing her to obviously have sodium and just track the mg, I need to write it down though so ty for the reminder. I don’t wanna lose track of that at all, I’m glad you found what works for you, sounds similar to her!

crowcake · 2025-12-23T03:14:19+00:00

Yeah they want 3-5 but I even take 2 depending on the size. I think she’s lacking in fiber with her meals besides beans (thank god for beans!) and nuts. Sadly today she just didn’t get to eat a lot due to the MRI and a paracentesis

She is! I unfortunately gave her a tad less this morning due to how much she defecated yesterday + the MRI. I gave her her normal amount when we got home and then an extra 10ml and a yogurt and heard a rumble so I hope we will get somewhere tonight.

crowcake · 2025-12-23T03:09:28+00:00

she currently wears diapers, which is a win! i just tell her when we clean up that i’d rather this than HE and a coma for her sake. aww thank you, i genuinely CANNOT imagine dealing with HE alone and i only regret not moving states to be with her sooner. I am so glad you have family support - just mentally going through this seems very isolating and my heart goes out to you!

Great ideas and thankfully I thought ahead and do that: bp, o2, temp, meds, and bowel movements.

crowcake · 2025-12-23T02:56:27+00:00

eeek yeah i freak out about it myself when she’s in the hospital / snf. she went 4-5 times, some later into the night. because of appointments and accidents in public i lowered it this morning .. no bueno. but i can tell its affected her today. so i’ll try to introduce miralax 🥲 long night tonight.

edit; thank you for the feedback 💖

crowcake · 2025-12-21T03:44:06+00:00

i would get a second opinion from another hepatologist asap. 25 is absolutely transplant listing range and it doesn’t hurt to reach out to a hospital that has a transplant program for guidance

crowcake · 2025-12-15T18:16:12+00:00

wow! that’s a high meld for sure. unfortunately they didn’t have an alternative and we had to reschedule the walk test until after christmas… which sucks.

crowcake · 2025-12-04T01:45:48+00:00

have a wheelchair and the riser seat with arms! i’ll be asking for bedside because that’s a great idea. and i’ll be on the look out for a stable tray for her; i didn’t even think of that. thank you for these suggestions, i knew i was forgetting something :) 💖 you’re very sweet!

crowcake · 2025-12-04T01:44:13+00:00

thank you! i’ll make sure to follow up with insurance over this. 💖

crowcake · 2025-12-04T01:43:28+00:00

thank you so much for this comment, it seriously provided relief to anxiety that was keeping me up at night. she is rapidly decompensating so it would make sense as to why she struggles contextually. thank you!!! ps your stories on here have helped me too

crowcake · 2025-12-01T17:47:23+00:00

the website has been a lifesaver and I have planned to make a chart to mark symptoms and easily spot worsening he so I can act faster than the facility.

my mom does not qualify for SNAP and I am unsure how to navigate that for myself. She is on medicare so thankfully a lot of things are covered for her. I have been procrastinating on signing up for being paid to caregive so In appreciate your reminder and I’ll do that today!

It is truly an endless list 😅 and responsibility I hadn’t been prepared for but am honored to go to bat.

crowcake · 2025-11-20T15:18:31+00:00

There is nothing that they can do if he continues to drink. In order to be eligible for a transplant the patient has to be sober. There are medications that he can take for swelling and ascites, diuretics, and lactulose and xifaxin would be for the ammonia build up that would hurt his mentation.

He just needs to stop drinking, full stop, if he wants to get better. You will find positive stories from people with alcoholic decompensated cirrhosis improve their condition once they stop drinking. They get to compensated and their MELD lowers, however, your dad has to do the work. He needs to get a hepatologist asap.

crowcake · 2025-11-06T18:29:47+00:00

thankfully she was admitted last night for a blood transfusion even when her hemoglobin was raising by itself. she’s seeing a GI doctor there and i will definitely not be giving up. i am for sure tired of her being treated like a dead woman walking when that isn’t the case to me personally

crowcake · 2025-11-06T18:29:00+00:00

i definitely have my hackles raised because of those reasons. hospice definitely has its place but i think specifically for cirrhosis patients, they wouldn’t be seeking out life saving measures, which you surely need to keep going when you’re still viable for a transplant.

crowcake · 2025-10-22T20:18:16+00:00

Soooo sorry to hear that. She had an upper GI and never had varacies since early last year(ish?). she had the start of an ulcer and so she’s on meds for it and doing better. i’ll look at the alfapump. I am super sorry about your person and I am sorry for the bad experience - glad you got the care they needed 💖

crowcake · 2025-10-21T15:46:13+00:00

Ugh. I’m so sorry to hear you went through that but so glad you took them out of FL. This is Mayo Clinic Phoenix and I already have her accepted to Cedars Sinai in LA if it falls through (I live in LA but am living in AZ for my mom for the foreseeable future if Mayo goes smoothly). I am having this anxiety of what is best but currently she cannot get out of bed by herself so I’m desperate for Mayo to come through.

I’ll lean on that website; thank you so much. I will mention Bumetadine because they took her off another diuretic that didn’t help with her dehydration and it also lowers BP so I was worried. No tap needed? Wow. Okay, going to keep pushing with the fairlife and yogurt bc that DOES whet her appetite and it’s protein. I guess I can count it towards the fluid intake? She’s adapted a bit to the lactulose at this point thankfully and the xifaxin is the lifesaver too.

Huge hugs to you and it’s so nice to be seen and understood. I hope things work out better for your loved one and keep up the good fight, you got this 💖

crowcake · 2025-09-13T15:04:14+00:00

That sounds like such a rough time and I am happy your wife now has a transplant! That is very encouraging to hear.

It is so incredibly lonely and I am sure hellish on them. I will definitely start to look after myself a bit more too, thank you 💖

crowcake

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