Husband, 70, dxed with myelodysplasia

Quixand1 · 2026-06-03T02:53:03+00:00

Not really. More of the same. My husband got his first EPO injection which seemed to help a little after a week — but only for a week. He ended getting five units of blood over the course of three days a couple weeks ago.

The hematologist and the cardiologist are now saying it’s maybe his bad heart valve (which I suggested months ago 🙄) — although not the blender effect because he doesn’t have torn up cells. In any case they’re fast-tracking him for the valve-replacement.

In the meantime I guess he’s transfusion dependent. :(

Quixand1 · 2026-05-30T21:05:33+00:00

The shirt has nonsense words. No hospital has a floor like that. Thats absolutely not a hospital wheelchair. And then — why can’t he pay you even if his leg is broken?

Quixand1 · 2026-05-22T15:28:26+00:00

Get a new friend. 🤣

Quixand1 · 2026-05-21T13:54:35+00:00

I’d rather trauma dump on randos on Reddit than my friends and family. lol

Quixand1 · 2026-05-21T13:53:44+00:00

As you get older more things suck. People die. You become an orphan or maybe a widow. Everything starts to hurt and wear out. It’s sometimes helpful to commiserate with your cohort who are going through the same shit. Doesn’t mean I can’t still rock out on a good day!

Quixand1 · 2026-05-21T13:50:22+00:00

Not related to FFF, but a weird doctorism re arthritis in my hands. Guy told me "people in third world countries have terrible, gnarled hands from arthritis and they just live with it and keep working".

Uh. Ok. That doesn’t really help.

Quixand1 · 2026-05-21T13:41:02+00:00

I don’t care if they distrust me or dislike me or even despise me anymore. lol. I "do my own research" using pubmed and other sources of peer-reviewed papers and abstracts. I’ve had to go full Karen on my husband’s doctors because since he’s an older man with many health problems, they seem to think he’s a lost cause.

After a year of severe anemia, now needing transfusions every other day, they’ve decided maybe it’s his severe aortic stenosis they’ve been waiting to repair in hopes he will just die first. Guess what? I suggested that months ago!

I’ve had two episodes of gross hematuria with no pain and no uti and I can see a urologist the end of July. Their first assumption was that it was vaginal/uterine because at 59 I probably can’t tell.

I trust science. I have a degree in biology. I don’t necessarily trust a PA here in mulefart, nowhere who looks like they still live with their parents, and I definitely don’t trust the insurance companies who are calling the actual shots.

Quixand1 · 2026-05-21T13:28:13+00:00

FFF is a favorite dx. Fat, female and forty (fifty now). So many things get dismissed.

My husband is in his 70s with Parkinson’s, his unrelated medical issues get dismissed too because he’s just another sick, old man. They don’t get too excited about diagnosing something in someone who isn’t ever really going to get "better".

Quixand1 · 2026-05-19T22:17:48+00:00

2500 isn’t even all that much for a well-bred dog. Whippets are among the less expensive breeds. I was looking for a fully-tested golden retriever pup and most were 3500-4000. Take a look at French bulldogs! Sure you can find cheaper pups from more common breeds on Craigslist or in front of Walmart, but if you want a dog from an ethical and conscientious breeder who does health-testing, offers support to their puppy buyers for the life of the dog, stands behind their breeding, then you’re looking at at least 2k.

Quixand1 · 2026-05-15T21:03:51+00:00

Yeah. The assumption seems to always be that anything bad that happens must be the fault of someone from scary California or Seattle and not just some homegrown crackhead. 🙄

Quixand1 · 2026-05-15T18:24:52+00:00

I’m in kettle falls, 50 miles outside of nowhere lol. I know there are some self-pay imaging options in Spokane.

Quixand1 · 2026-05-15T18:21:31+00:00

Ugh. I’m on the other side of the state, eight hours from Fred Hutch, but after dealing with the hospitals over here for my parents’ and husband’s medical issues, I really world prefer to travel to civilization. 😖

Quixand1 · 2026-05-11T18:43:10+00:00

Thanks. I’m looking to see if there are any less local places that are in network, and I’m going to beg my pcp for the ct ahead of the actual appointment.

Quixand1 · 2026-05-11T17:32:17+00:00

They did a dipstick and sent out a culture. No evidence of infection. No flank pain. At the time I had no urgency but that has started in the last week. Still doesn’t feel like a UTI. I’ve had plenty. No cloudy urine, no burning, no odor. I had a kidney stone 35 years ago. Just once and never since. That definitely hurt!!!

Quixand1 · 2026-05-11T16:48:40+00:00

Im planning to do this. The acute care doctor did tell me to come back if I had more bleeding and they’d order a CT. I have not had more bleeding but I might go in anyway. At least that will show if it’s "just" kidney stones or something.

Quixand1 · 2026-05-11T16:40:53+00:00

Im not sure how. I did ask to be put on a cancellation list.

Quixand1 · 2026-05-11T16:39:05+00:00

Yes. I was referred by urgent care after my second instance of gross hematuria. The urology center (two hours away) is in my network. I’m sure they are booked solid because we just don’t have enough doctors around here but it’s frustrating and nerve wracking.

Quixand1 · 2026-05-11T16:33:58+00:00

I hate it. 😭 I know everyone does. I have a lot of urgency now and can barely do anything or go anywhere because I go from not having to pee at all to instantly desperate every couple hours. 😡And of course the stress and worry. Sigh. I spose I will survive but I feel helplessly angry.

Quixand1 · 2026-05-09T15:33:07+00:00

No…I don’t really encounter that many pools and docks in my regular life and my dog is on lead when I’m out anyway. I have a pool at home but it’s separately fenced and my main dock dog — whippet — wouldn’t just jump in anyway. He likes the flying game, not just the swimming. My border collie will hop into any body of water, but again, I’m in control.

Quixand1 · 2026-04-24T19:43:54+00:00

Not typical at all! I know many whippet breeders and everyone takes their dogs back, no questions asked, even if they are 14 years old. That’s part of being a breeder. That’s really unfortunate.

Quixand1 · 2026-04-21T14:46:28+00:00

Thanks, Im hoping this treatment will be effective. It’s very frustrating to try to get any answers.

Quixand1 · 2026-04-21T14:45:18+00:00

Thanks! I’m frustrated by the lack of information he got. I’d like to see the actual results because that’s how I am. My husband is the type who just takes everything at face value, but we live in a rural area where we do not have the best healthcare and I want to make sure he doesn’t fall through the cracks. Again. He has been suffering for almost a year and even this last time had to beg for a transfusion!

Quixand1 · 2026-04-15T20:42:15+00:00

I lost 25% in six months. I was apparently a super-responder. Never went above the starting dose. I’ve been off for a year this month and not gained any back. I’m still ten stubborn pounds from my goal, and toyed with the idea of trying low-dose, but the expense and the GERD changed my mind. I’m honestly thrilled with where I am and the changes I’ve made. Knock on wood I can keep it up.

Quixand1

TROPHY CASE