rowyn | Entries tagged with lut

I was supposed to go to Seattle on Wednesday, June 9, but Lut was admitted to the hospital on June 6, after he grew increasingly confused over the course of the weekend.

The hospital never quite figured out what he had. “Maybe pneumonia.” But it cleared up after a few days, and he was discharged on June 9, about the same time the flight I’d originally scheduled was leaving the airport. In theory, I could’ve switched to a later flight instead of cancelling the trip, but by that point I didn’t want to leave Lut alone to fend for himself for several days.

This was just as well, because a week later, he was readmitted to the hospital, for confusion and hypoxia (low blood oxygen).

The diagnosis was, again, “maybe pneumonia”. They gave him yet more antibiotics, and on Saturday, June 19, sent him home. This time, they prescribed oxygen for him, although this required something of a song-and-dance to accomplish.

Nurse: “We can discharge you today, just need to give you the breathing test to find out if you need oxygen at home.”
Respiratory therapist: comes to his room, takes him off oxygen, brings him back a few minutes later. “He did great! Won’t need oxygen at home.”
Lut: lies down in bed
Lut’s blood oxygen: plummets
Nurse and respiratory therapist: futz with two different monitors and sensors to make sure it’s not a monitor problem
Nurse: “Well, we can’t send him home with his blood oxygen this low.”
Me: “You mean you need to send him home with oxygen, right?”
Nurse: “No, we can’t send him home with oxygen because he passed the breathing test so insurance won’t pay for it.”
Me: “... can I just buy oxygen? With money?”
Nurse: “Sadly, no.”
Me: “So insurance will pay for additional days at the hospital but not for the much cheaper “send home with oxygen”?”
Nurse: “I KNOW RIGHT??? It’s so frustrating. >_<”

By now, the respiratory therapist had left. About an hour later, the nurse came back and took Lut off oxygen. “The RT will do the re-test in 10 minutes and presumably he’ll fail it then.”

An hour passed, of the oxygen monitor beeping because Lut’s was too low. Finally, the RT returned. The nurse and I coached Lut to fail it. “Breathe shallowly! No deep breaths!” The RT brought him back in thirty seconds. Mission accomplished.

I’ve been monitoring his blood oxygen closely since we got home. He does well enough while using the oxygen that I don’t bother with readings while he’s on it. Whenever he’s sitting without wearing it, I check it every hour or so -- we have one of those little pulse-oximeters. On the first two days after he was discharged, he still had the occasional reading of 89 or 88 (they want 90+, and when he left the hospital he was more like 85 on room air). But since Tuesday or so, I’ve only had one reading of 89, and that went above 90 immediately.

We talked to his general practitioner on Thursday 6/24. He said to keep an eye on it and experiment with leaving it off as long as oxygen levels stayed high. But even if he didn’t need it at all, we should wait 4 weeks before calling to return the equipment. You don’t actually buy oxygen at all. You rent an oxygen concentrator. While the patient is at home, the patient uses the oxygen concentrator with a 50-foot extension on the cannula so that they can move around the house. When you go out, you take a tank with you to use. There’s a machine that goes on top of the concentrator that can be used to fill little portable tanks that fit in a shoulder sling, which is a lot less annoying than the big tank on a wheeled caddy that the hospital sent us home with. We have three of those tanks, too, but those are “in case the power goes out” rather than designed for travel. The little tanks have a special valve so that they only dispense oxygen when he inhales, instead of continuously, so they last just as long despite being much smaller. I don’t know why the big tanks don’t have the same kind of valve.

After a hospital stay, they always send out home health aides, so he’ll get physical, occupational, and respiratory therapy starting next week.

My little victory during all of this has been getting back to regular exercise. Over the course of the last year and a half, I’ve dropped from 5+ times per week to 3-4 times. Every month this year, I’ve had “exercise 20 times” down as a stretch goal, and for the last three months I have ended up at 16-17 instead. In June, I exercised for the first three days, and then Lut grew sicker and I didn’t exercise for a week. On June 11, I looked at my list of stretch goals and thought “It is still technically possible to make this goal. I will do the thing.”

And then Lut was hospitalized again and I thought “okay, Imma lower my bar for what qualifies as exercise.”

So I started counting stuff like “did one 10 minute beginner’s aerobics video” or “did 30 minutes of pacing while on the phone” (Google Fit measures how much pacing I do, and I make an effort to pace as if I were walking, by going from one end of the house to the other and then back.)

Doing this reminded me of when I used to trick myself into starting to exercise by promising myself I could stop any time. “Just five minutes. You can always stop.” And then once I got started, I’d always continue through to my usual end.

Except that this time, I was letting myself actually stop.

I made it to 21 times in June -- maybe 22 if I decide to exercise later today. But I’ll take it, either way. My overall activity level this month is higher than at any point since October 2020. “Anything is better than nothing” is a good strategy to keep in mind.

Lut was discharged yesterday!

I forgot to bring a snack or lunch to work yesterday. I can't remember the last time I forgot food. But I was only working until 2:30, so I figured I would get something when I left. I had a couple of mini Twix bars out of a co-worker's candy bowl.

Lut called at 1:45. "I'll be ready to go at 2:45!" So I left work at 2:30 and went straight to the hospital, arriving at Lut's room around 2:55. I packed up the stuff in his room and paged a nurse to get his remaining beverages out of their fridge (this hospital keeps their snack room locked up).

Nurse: "He has one medication to get from the pharmacy. I called them earlier and they said it's ready for pick up. Why don't you pick it up, call us when you've got it, and then we'll bring him down in the wheelchair* to the front entrance while you bring your car around?"

* Lut can walk, but he tires quickly and the hospital is ginormous.

So I shoulder several bags full of stuff and go down to the hospital pharmacy on the ground floor.

Pharmacy: "Lut? We don't have anything ready for Lut. We don't even have anything on order for him. We have some incomplete requests that they never finished?"

I called Trask and asked him to page the nurse, to see if this was something we could only get from the hospital pharmacy or if we could get it filled at our regular pharmacy. Then I walked back to the car, dumped off all Lut's stuff, and walked back up to his room.

Nurse: "Sure, we will give you a paper prescription! You can get it filled anywhere. Just waiting on the doctor to sign it!"

Me: "You can't call it in? Uh, okay."

After another wait, we finally leave the hospital at 3:55. We wade through the beginnings of rush hour traffic, and go to the Wal-Mart pharmacy two miles from our house.

Wal-Mart Pharmacist: "Oh, this is a compound. We don't do compounds here, sorry. Some of the Walgreens do. CVS on Noland Road, maybe?"

So I go to Walgreens on Noland Road, which is across the street from the CVS, figuring I'll ask CVS next.

Me: "Can you fill this?"

Walgreens: *takes script, takes all my insurance info*. "It'll be ready in an hour, hour and half."

I went home, made dinner, ate, talked a little to John when he messaged, and played a game of Small Worlds online with him. By now, it was 7PM and I hadn't yet heard from Walgreens, apart from an automated text asking me to acknowledge that I wanted texts, and then a second text confirming that I did. I called Walgreens. Their automated system had no record of my order. I waited on hold for several minutes to talk to a person. The person also had no record for my order. She went to talk to the pharmacy. I waited on hold for several more minutes.

Walgreens Pharmacy: "Oh, I thought I paged you before you left. We can't fill this. I just put it to one side."

Me: SCREAMING FOREVER.

Me: *drives to pharmacy, still screaming*

I waited several minutes at the useless Walgreens pharmacy to retrieve the piece of paper, and took it across the street to CVS.

CVS pharmacist: *makes many sympathetic noises as I complain vociferously about Walgreens* "We do compounds here, but we usually send them to our overnight pharmacist. I don't know if we have this drug in stock. I will look."

Me: "He's supposed to get this four times a day and the hospital had only given it to him twice when he left."

CVS pharmacist: *ransacks pharmacy looking for drug* "I'm afraid we don't have it. It's pretty obscure; a hospital pharmacy will probably have it but the other ones only would if someone else had recently placed order and they had some of the powder left over me."

Me: *thanks nice CVS pharmacist and tries not to cry*

Me: *calls hospital pharmacy to make sure they can produce this tonight*

Hospital Pharmacist: *checks* "Yup, we can."

Me: "You're open 24 hours?"

Hospital Pharmacist: "Oh, no, we close at 9PM."

Me: "Okay I can get there before nine."

So I spent another 30 minutes getting back to the hospital pharmacy, waited 20 minutes to get drugs, and finally went home so I could dose Lt. About 2 hours apart, because it was so late by the time I got home with drugs.

I guess the moral of this story is:

1) Eat lunch so you are not furious over every problem that arises

2) Never leave the hospital without all the medications you will need that day, whether or not it delays you.

Still. Six trips to four pharmacies over the course of six hours, to get one prescription filled. x_x

Scorecard:

Hospital Pharmacy: C for not having the prescription ready the first time (after telling the nurse it was ready! What the heck, pharmacy?), but at least made up for it by getting it ready the second time

Hospital nurse & doctor who signed prescription: C- Maybe it's not their job, but I feel like one of them should have known I was not gong to be able to get this prescription filled same-day anywhere else.

Wal-Mart Pharmacy: B. OK, he couldn't do it, but he knew that right away and attempted to redirect me to someone who could. And in fairness, if I hadn't needed it filled same-day, the CVS would have been fine

Walgreens: F-- NEVER GOING TO ANY WALGREENS EVER AGAIN STILL SO ANGRY

CVS Pharmacy: A+ pharmacist actually knew what she was talking about and gave useful advice.

All of this aside: Lut is home! \o/ &hearts;

This is a profound relief.

We are back to the 24/7 care routine, with daily visits to the clinic. On Monday, they will once again attempt to collect stem cells. This is scheduled for five days, which is interesting because previous attempts had all said "might take as much as three days". I am not sure if this is because it might actually take five days of collection, or if it's more "if your counts are not high enough to start collection on Monday, we tentatively plan to try again on Tuesday and maybe Wednesday, so here's some extra just-in-case appointments." We're at the clinic now and the doctor is supposed to see us this morning, so I'll ask him about it when I ask about his meds.

I went through Lut's email and found some email addresses from 2009 for family members. I tried emailing, and reached one of his brothers and one of his sisters. They contacted the rest of his family for me, so his family knows now. Three of his siblings are going to come on Friday to see him.

He's looking better this morning. Still delusional, but he's calm, articulate, and willing to accept assistance. He's breathing better and when he dozes off it looks more like actual sleep. I don't know if this will be a sustained upwards trend, but I'm hopeful.

He started chemotherapy on Tuesday. He gets one treatment per week for two weeks, then one week off, then repeat. In 6-9 weeks we'll know if it's working. The chemotherapy includes a steroid, and he's on an antiviral because the chemotherapy weakens his immune system. He's also getting Halidol for his neurological issues. And an antibiotic because he was running a fever for a little while.

For my hospital-related transportation problem: I am thinking about buying a new car, rather than a used one. I can afford it: I only live like a poor person, I am not actually poor. I don't have enough ready cash to buy one, annoyingly. I may look into getting a loan against my 401(k), to avoid paying third-party interest or early withdrawal penalties. I don't know if this will qualify or not.

Recommendations on cars are welcome. Pretty much all I want is a good cost-per-mile figure and cheap to insure. I do not need or want any fancy extras, or a sporty car or an SUV or anything. I am perfectly happy with small, reliable and efficient. -_-

Thank you, everyone, for your well-wishes. ♥

Lut's biopsy results came back yesterday and confirmed multiple myeloma. His oncologist started him on an antiviral yesterday, and today he stars chemotherapy and a steroid. The oncologist thinks that this has a good chance (70%+) of improving his situation, including his mental state.

His mental state has crumbled almost completely. He still knows who he is, and who I am, and that's about it. He's paranoid and delusional, and generally angry at everyone around him for holding him captive while we try to get him healthy enough to return to reality. x_x

The oncologist said it would be 6-9 weeks before we know if the chemotherapy is working. His nurse yesterday thought the steroids might have a beneficial effect on his mental state in the short term, like the next few days.

I hope so, because he's only gotten worse so far.

I looked through his gmail and found email addresses for three of his siblings, from 2009. I tried emailing them this morning to let them know. One of the addresses bounced. I don't know if the others are still active or not.

I have a rental car for a month. I think I should probably buy a car. I am not ready to face doing that yet, and I kind of need to.

In theory, he qualifies for Medicaid and disability, especially since we're not married. Since we're not married, I can't sign documents for him. He is neither lucid enough nor tractable enough to sign documents himself. I haven't figured out how I am supposed to get around this yet. I will talk to the hospital staff today and see if they know. The application form wants a bunch of medical specifics that I don't have anyway.