On death and dying

Reply Sun 30 Jun, 2019 10:01 am
does the insurance help with the cost. ?.
BIG DUHHHH :Ill call and ask my cousin
:::::5 min later:::::
My cousin said that the insurance helped and my aunt had a prescritions medicare program (part D ?) that made it almost zero, (except for the policy an a co-pay of 20$ per year)

Reply Sun 30 Jun, 2019 10:13 am
For a battery operated one? Hadn't even thought of that. Like Scarlett O'Hara, I'll think about that tomorrow. Smile

As far as current cost, yeah medicare covers the usual 80%. Our part isn't much, for the concentrator, at least not enough to get all excited about today.
Forget who, but either the nurse or O2 guy said we could also go through the VA and it would be at no cost.

So if this turns out to be permanent, sure we'll go through the VA. But for right now, all this being so new, we're just going with the flow.

Good idea though, if we go that route will definately check that out. Thanks.

EDIT: Oh, just read the rest of your answer. Good info.

heh....I guess the universe sent you my way farmer..... Laughing

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Reply Tue 2 Jul, 2019 01:01 am
Tomorrow (actually today, it's 2am) I'm going down the VA center and see if I can get a home health aide through them.

I just can't handle everything.
Reply Tue 2 Jul, 2019 07:38 pm
At the VA, so much better than expected. I really had a lightened heart when I left.

After getting past a couple of paper pushers, I met with a social worker. As an aside, you know how sometimes you meet someone and immediatley feel simpatico? #1 it turns out with were just the same age. It was just this woman to woman we both been through stuff kind of feeling. She was real.

Anyway, it turns out that she's sure he would qualify for a HHA a couple/few times a week. That was a relief right there. But the big thing was that once that starts, I could get respite care of 30 days a calendar year!

That means I could actually go away from a Saturday to the Sunday in the next week, like 9 days, and he would be safe. He'd just go stay in a nursing home.
When she explained that, I just bust out crying. I hadn't realized how much pressure I'd been feeling, and how much of my life I'd given up.

I had already known that if the day comes he had to go long term into a nursing home, the VA covers that. I did ask her if she knew how much of his montly VA check I'd get to keep for living expenses. She didn't know the amount, but she gave me the numbers to call to get that info.

He's feeling a better. Meaning his back ribs aren't causing near as much pain. I got one of those oxygen saturation monitors, and his numbers are ok. Not great, but ok.

Tomorrow we go to see his PA to find out if she wants him on more antibiotics, and answers to other questions.

Reply Tue 2 Jul, 2019 08:08 pm
Glad you finally got some good news.
Reply Tue 2 Jul, 2019 08:36 pm
Me too. Thanks.

Oh but wait. It would be complete unless I tell you the WTF part of the day.

Tomorrow around the same time we have to go to a doctors appt, some guys are coming over to do yard work.

I went next door to my neighbor to ask him if we're not home, would he mind giving them the money. He uses them too. This is the same guy who when I was desparate to somehow get my confused husband into the car, he was all "ooooohhhh.....I don't feel comfortable with this...." The same guy who was always saying come over if I need any help with him. Obviously the relationship has cooled, but we're still friendly enough.

So he says sure, and asks me a couple questions. But you know how that goes, people ask questions, but don't want to hear the answer unless it's pleasant. Well I of course didn't have anything pleasant to say about the last week.

Anyway, here's the kicker. He pauses, and what he starts to say makes me think that maybe is was getting at telling me in the future he could be the kind of help that would be needed. It kinda started with "I want you to know chai, that...." don't remember the rest of the exact words.

Somehow it completes with something like "Let me know (still positive I'm thinking) if anything..you know.....happens."

I'm thinking "happens?"
I say "you mean if he dies?"

He replies "yeah"

Well f*ck me. You live next door, I would think you'd know when the ambulance pulls up. Or a hundred other things.

Oh yeah. I'll make sure you're the first to know.

Reply Wed 3 Jul, 2019 05:27 pm
Christ on a cracker, what an asshole.
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Reply Tue 9 Jul, 2019 02:10 pm
Went to his electrocardiologist today, as they called a day after he got out of the hospital, and said they needed to address something showing up on the history of his ICD (defibrillator)

He has the ICD mainly because of his Vfib. But it also acts as a pacemaker.
They said today that starting around his last hospitalization it had also been tracking his Afib. Seems his heart isn't popping out of Afib, so they'll need to make the ICD shock him to get him out of Afib.

He had a choice of them just doing it in the office, or under some sedation as an outpatient at the hosptial at the end of July. Uh, hospital thank you. They also changed him from taking coumadin to Eliquis, which is apparantly the new best thing. With coumadin, his INR constantly has to be checked, and INR is notoriouly difficutl to keep stable. With Eliquis, they don't need to monitor.

Thing is, it's generally not covered by Medicare, and is expensive. The electrocardiologist did know that the VA would cover it. So, they gave us enough samples to take for until he goes to see his VA doctor in mid August.

He is actually off the oxygen too. I bought an oxygen saturation monitor (an oximeter) off Amazon. It was only something like $25. I didn't know they were so cheap. His o2 levels are back up between 93 and 96.

However, I don't want to give up the oxygen compressor. I'll pay the rental for the month or so, until we go to the VA doctor. I'm sure we'll be able to get her to order one for him, and through the VA it will be free of charge.
If he is good enough to drive to Mexico, I want him to have it. It's over a mile high there, and I don't want trouble.
Reply Tue 9 Jul, 2019 02:30 pm
There's something else I want to mention. If you are uncomfortable with facing the realities of being around someone dying in your presence, don't read on.

This is something that for years has haunted me, but I could never get anyone to give me a straight answer. Today I finally got it, and what a relief.

The ICD is for shocking his heart back into rhythm if he goes into Vfib (it's also of course right now pacing his heart because of the Afib).

But what happens if the heart just stops? When it's to put it bluntly, your time to die.
He also has an abdominal aortic aneurysm. If that bursts, it is usually quickly fatal, with no time to even get to hospital.
My fear is traveling with him, hours away from anything, and that happens. Not so much the dying part, which is bad enough, but will the ICD continually go off when the person is obviously dead?

Grusome I know, and distressing that no one could/would give me a direct answer.

Yesterday I wrote a short letter to the doctor, and what planning on giving it to him when the visit was over, so he could answer me via email. Even his regular cardiologist wasn't clear when I asked him, but since this guy is the electrocardiologist he must know. I didn't want to discuss in front of husband, which also has been a problem whenever I would try to bring it up.

Turns out I didn't need it. apparantly the tech from the ICD manufacturer was going through his yearly eval, so he had his supervisor with him. She was obviously very experienced and knowledgable. I slipped out of the exam room with her when they left (I think Wally thought I was going to the rest room) and asked.

She matter of factly informed me that the ICD would detect and correct arrhythmias, but if there were no heartbeat, there would be nothing for it to try to correct.
She added that even in the case where it did try to shock him, it was programmed to go off 6 times only, then stop. Those 6 times would be in the space of a few minutes.
I knew to stop the shocks you could put a large battery over it. The tech she was reviewing pulled one out of the cart, handed it to me and said "You can have gave this one" Then told to keep it away from my credit cards and phone, so I slipped it into a pocket on the other side of my body from my bag.

It was a big relief learning this today, and who knows, maybe this info will help someone else someday.

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Reply Tue 9 Jul, 2019 02:49 pm
Good timing you had there since there was somebody who had the answer you needed. I am often stunned by the number of people in the .medical profession who don't have the answers. Especially when they are supposed to be the best and be experts.

Glad to learn he is switching off Coumadin. I remember those constant blood monitoring tests. It drove me half insane. Then I'd get a call from the doctor's office on which pill I was to take. At one point I was to take the 3 on 4 days and to take a 4 on the other 3 days. (I'd also had 2 other bottles of Coumadin at other amounts). Finally was put on Xarelto and the monitoring thing stopped. It is covered under my Part D plan but that doesn't mean it's so under yours or that it would be right in this case.

Good you got enough samples to tide him through until the VA visit.
Reply Tue 9 Jul, 2019 03:04 pm
Oh yeah, with the C. he has to take certain amounts some days, other amounts on others. Plus that is constantly being adjusted depending on the results of the INR tests.

I honestly don't know how people keep it straight.
Reply Tue 9 Jul, 2019 07:29 pm
i take coumadin and I rather like it. Ive gotten and rigged a fibrinogen "O;scope". (It times the reaction of fibrin as it "dims" a transmitted beam of light of a specific wavelength.(What I did was go to the U's "toss out" storage for old optical comparators and rigged one up). I took it to my coumadin clinic and me and the nurse each ran a comparison sample of a pin prick droplet(she taught me how to smear the slide). I have to time mine (nd I do it by doing my blood drip test three times.Ive been stuck, shot and blowed up so many times I really have no feeling on my left arm/hand and butt cheek so theres where I prick me self
My numbers compare to theirs really well and Ive got a guy whose trying to make a "home unit" so that anyone can do their own. (Just like Blood glucose.

I keep my INR at about 2.5 by only eating deeply green **** about no closer thn 4 dys aprt and I DO NOT eat any of the foods that act as blood thinners(The web is loaded with that info). Apparently your body will adjust a low INR upwards quicker than it will drop a HIGH number downwards.

One of my No No foods for the rest of my life is calamari, who knew it was a natural blood thinner??
Diet is key.

Some of those other blood thinners have a really scary sound to em.
Reply Tue 9 Jul, 2019 07:30 pm
I keep all my pills in a data log book. Times , dosage, and comments.
If I live, Im gonna send it all in to BJM
Reply Tue 9 Jul, 2019 07:38 pm
I only had one dum incident in 26 years of coumadin. I stupidly did a val salva once when I was constipated from not being hydrated in the high plana and then Imust have blown a blood vessel in my ass because I was shooting fresh blood into the camp toilet. It took several days of stool softeners and very high fluid intake before it healed .
Lessons llearned .
I got more but nothing about coumadin
Reply Tue 9 Jul, 2019 08:15 pm
farmerman wrote:

I was shooting fresh blood into the camp toilet

That reminds of this "actors read yelp reviews"

The look on her face at 1:45 is exquisite.

Reply Tue 9 Jul, 2019 11:30 pm
wow, no rehersal, they just pulled this on her. pretty good
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Reply Wed 10 Jul, 2019 02:20 am
All I can say about this video is thanks for a literal laugh out loud.priceless.

Back to main subject, I have read and reread what you’ve wrote. I will reread it again. FWIW, it’s a subject near-and-dear to me as I’m a fortunate survivor of a two separate and serious health scares, and am in my late-60s. Same with my significant other, marvelous Maxine (survivor of breast cancer and also in remission).

When you (collective) get a health scare once or twice, you look at the world a bit differently. However when our have health scares that happen to your loved ones thrust upon you repeatedly, then it’s a whole other kettle of fish!

I’m in reasonably good health now and likewise have an implanted defib-pacemaker. My cardiac rhythms are pretty stable now and I’m not on Coumadin. Oh yeah, 6 years ago I survived a battle with NH lymphoma. I am relatively unscathed all things considered. I thank my lucky stars I made it through both incidents and procedures.

Bottom line is that your testimonies about that which you (and Wally) experienced could have been me...could have been anybody. You are handling it (and handled it in the past) as well as a person could be expected to handle it. To just commend you on your courage does not do you justice.

May you continue to have the strength you need to see this through. You provide valuable insight into so many areas both with the medical care system as a health system consumer and just being a living breathing human. This is not in the life manual they handed out when we’re explained how life is. You know the one? Right after we graduate 🎓

PS: tip of the hat to FM for his valuable contributions here too.
Reply Wed 10 Jul, 2019 08:48 am
Thanks ragman.

Insight. Yeah. It's gained over time.

One of the most important lessons I've gotten from my life (so far) is realizing there are times when your attentions will be focused on yours, or someone you love, immediate or near immediate situation.
That's why when you can, in between these times, it's important to prepare for when you have to fly solo down the line.
I've been fortunate to be able to make a plan for myself for down the line. I don't mean fortunate as in lucky. I mean fortunate in that I realized to prepare while the waters are calm.
Nothing just fell into my lap.
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Reply Fri 19 Jul, 2019 07:48 pm
Wow was I the little hell raiser today. Laughing

Not really. Just probably perceived that way by a few people that I insisted be accountable for what they get paid for.

Went to the VA office today for several things: To drop off notes from a couple different doctors (was told to do so last week so they would be in the system by the time Wally sees his PC doctor at VA next week. Since I was physically there I wanted to set up a couple of appointments, and also visit the benefits area to ask a compensation question of them.

A lot of the people that work at the VA are veterans themselves. Some of those people have that military type personality that things are done in a certain way, in a certain order, at a certain time. That's cool. I understand some people just work their lives that way. To me, I've met former military people that seem kinda "Asperger-y". Maybe it's a bad analogy, maybe it's spot on. They're a bit more rigid in how they do things. I've had no problems with these people. I know they have to follow the rules, and I can do that.

But then there's another type that, just like in any workplace, are just not gonna make it easy for you, even though it's actually their job to do exactly that.

The information desk (always very nice) sent me over to my first stop, which was finding out who I give the copies of the notes to. I was the only person in queue, so I was shifting my eyes back and forth once in a while to see which worker was going to be ready for me first. They're behind a barrier, like bank tellers, but sitting at desks. I'm standing where it's indicated to stand, maybe 12 feet away from them. So not super close.
At some point the guy on the left, not looking up from his computer says "yes".

Not even "Yes?", and obviously not "Yes, may I help you?" or even "Next"

Just "yes" like he was responding to someone on his side, or talking on the phone, etc. and at a volume I could hear, but wouldn't be used to talk to someone more than 3 feet away. So I'm still looking back and forth to see who's gonna take me.

Then he looks up and gives me this half disgusted "YES?"
Then I recognize him as the first person I ever interacted with at the VA. The one who made my palms all sweaty and heart start beating faster because I was more and more getting the impression even going there was a mistake, and that everything was going to be like pulling teeth. I remember walking away from him that first time in the first stages of fighting off tears. I saw him once after that, equally unpleasant encounter, so this was third time I'd talked to him.

Note: It's not, overall the people at the VA. Most, vast majority are wonderful, helpful, respectful and really want to see you get what you need.

Anyway, I'm like "Oh!" and approach. Pretty near verbatim what I said was "Hi. My husband is the veteran. Last week we were told by a nurse here to get various notes from a couple of his doctors in the community and bring them in for his medical records. The doctor needs to see them before his visit next week. She didn't say specifically who to give them to, so I guess you're where I should start. Who gets copies of medical records?"

So....did anyone have a problem understanding that?

I get silence for a few moments, then, "And?"

Me: Um.....And what?

Him: And what do you have there?

Me: Oh. Well, I've got our MPOA here which the doctor has asked for. And a note from Dr X so you can take over his script for Y, since medicare doesn't cover it, and it's expensive...and I've got....

Him: Who is his doctor?

Me: Here? Dr. S

Then he said something really strange I can't remember, that didn't seem to make sense. Turns out after another round of "I don't understand" that he needed to know who the vet was. Like he couldn't have asked for the name or social, it was in some odd way I can't even describe.

Him: (click click click) He was supposed to see her on (names 2 different dates)

Me: Yes. Dr S had to cancel both those appointments, and we rescheduled both times.

Him: But he came in last week and (looking at the computer) INSISTED on seeing someone
(yeah, that was weird. We were told by a helpful person on the phone it's best if we just came in as a walk in some day if we needed to have some administrative questions answered, since the doctor had cancelled twice. The clerk we got that day was one of the "asperger-y" types and for some reason when entering his comments while we were standing there, very firmly read what he was typing, that we INSISTED on seeing someone today. I'm sure because we didn't have an appt and that was messing with his mind. Laughing ) He was ok though, just anal.

Me: Yeah, we did see someone. The nurse who told us to get these papers and come back here.

At this point he said one more thing, that didn't in any way tell me anything, and I decided enough was enough. Today was a day I was strong and powerful.

"You know, you're going to have to start being more helpful, polite and pleasant to me right now. You're not intimadating me, and I've given you everything you need to know to give me the information I need. I met you a couple times before and you were every bit as unhelpful and unfriendly as right now. I've had a few people ask me if they think they could get help from the VA, and I always tell them to come by here and find out. But I warn them that they may run into some paper pushers, Like You, before they actually meet someone who helps them. I can understand why people are hesitant to come here because if someone like you is their first contact, they're going to want to turn around and leave."

He started to give me a "I'm sorry, but I'm a vet too..."

"Well then you should be doing an even better job because of that. Aren't you here to help other vets and their families navigate through the system? Now where do I have to bring these?"

BTW, all this was said not in an overly loud voice, but loud enough to be heard 12 feet away by the new people in line, and all the people behind the barrier. Everyone back there was pretending to be doing something close enough so they could see what was going to happen next.

Him: I'll get a nurse for you.

Me: Good. Thank you.

Waited 5 minutes, saw nurse, first part of mission accomplished.

Next stop at the VA, next post.

Reply Fri 19 Jul, 2019 08:05 pm
I bet that felt terrific.

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