Posts by Ethan Reyes2

Just needing a moment to catch my breath here: I just got off the phone with UnitedHealth Group, and they’ve pushed my PET CT appointment back to February 15th.
The reasoning they gave me was that things were too backed up in December and they basically need to clear out everyone who was originally scheduled for that month first. 😕
I honestly can’t even begin to describe how much this sinks my heart. 😢

Time is such a precious, finite thing when it comes to my mom... her ideal window to start chemotherapy was actually December 15th.
Now, she’s going to be two full months past that optimal timeframe! I’m just sitting here wondering, what on earth am I supposed to do about this?

Jesse Morgan3 said:The New York Times just published an article featuring statements from several doctors—people like Stern and Mrsić—and they’re making the claim that... It’s funny how things work, isn't it? Any doctor has the authority to just sign off and declare that a patient is an urgent case, which essentially means they bypass the entire waiting room shuffle entirely.

I suppose this is the first bit of news I've come across on the matter.
That’s certainly worth keeping in mind, isn't it? It feels like one of those pieces of information that actually carries some weight when you stop to think about it.

I’m absolutely certain that the doctor overseeing that little girl's care knows exactly what they're doing.
So, looking at it that way, why does everything have to be so sensationalist and shallow? It feels like people just want to jump on the bandwagon and tear the whole system apart whenever it suits them, without really thinking about when that’s actually productive or when it’s just noise, which honestly doesn't seem right at all.

It seems pretty obvious to me that we’re looking at the actions of a single individual here, rather than some fundamental failure within the system itself. Is it really a systemic breakdown if one person just decides to go off the rails? It feels more like a case of personal accountability being the issue, doesn't it?

I wouldn't go betting my life on the idea that her doctor actually knows what's going on here.

It’s much like how I don't really see it as a matter of one specific person being at fault here.
Whenever you're setting up an appointment for those kinds of specialist consultations, they always require you to submit your entire medical history and all your documentation upfront, don't they?
So, a doctor makes a massive oversight, sure, but it really makes you wonder where everyone else was in that chain of command—all those staff members who are supposed to be listening to what patients actually need? How does a situation like this just sit there, gathering dust, while someone is left waiting for nearly a year without anyone stepping in to fix it? 👎

Angela Wright said:Any tests labeled urgent—which, let’s face it, is clearly the case here—that end up on a waiting list longer than three months (though if it's truly urgent, isn't three months already an eternity? 😳) can actually be done through private providers, and Medicare will reimburse the cost.
I honestly don't understand how nobody has pointed this out to them.🤷

Most people just don't have access to this kind of information. I've seen firsthand that even some doctors aren't fully up to speed on the specific regulations or patient rights...
then again, there might be cases where people do know, but they simply don't bother sharing that knowledge.

Sure, you get the reimbursement, but what happens when people genuinely don't have the cash upfront to pay for a private scan or test in the first place? 😢

Back during Christmas, I witnessed a truly heartbreaking situation 🙂
it was a family with a young child... the father was the sole provider, but he hadn't been paid for months. By Christmas, they were left with $6.75 😢
the mother is ill, dealing with thyroid issues, but since they can no longer afford their supplemental insurance, she can't even go in for the checkups she needs, nor can they afford the copays required for those visits. So, she just stays home, suffering through it day after day. 😢

They live in a small town, they don't know how to navigate the system on their own, and so they just spend their days stuck in this cycle of sadness and struggle.

I fear there are far more people like them out there than we realize. 😢

It’s just honestly, deeply tragic.
Our healthcare system should be absolutely ashamed of itself. 😢
I mean, what is the point of all these extra contributions, supplemental insurance plans, and co-pays if this is what we get?

Dana Miller2 said:🙂Thanks, 😢
For the first time ever, she actually told me she loved me. We aren't exactly the kind of American family that sits around exchanging those kinds of sentiments, you know? But then again, I always just felt it deep down.
And I told her too.
It’s hard, isn't it? But there is something so incredibly beautiful about having the actual time to say goodbye.

My dear 🙂Dana Miller2

I don't know...

I guess I just hit my breaking point today.😳

Angela Wright said:Honey, we operate on the assumption that things are going to be this messy from the get-go.
That’s really why we have this space, isn't it? Just to offer some comfort and maybe point each other in the right direction. 😉
The way healthcare works here is that your GP writes you a referral, and then you call the ambulance service around 7 AM on the day you need them, and they just circle the city picking up everyone who needs a lift to the hospital. They aren't exactly known for being reliable about timing, either. They practically took my mother on a joyride before she could actually make it to her MRI appointment.

The whole healthcare setup sounds quite fascinating and thrilling, doesn't it? 😁

I honestly can't even find the mental bandwidth to focus on taking care of my mother because I'm constantly bogged down by these endless administrative headaches. It’s incredibly frustrating, and I find it hard to accept a situation where she has been paying into health insurance for thirty years, plus extra premiums, only to be denied timely and decent healthcare when she actually needs it. 😠

We booked a follow-up with a gastroenterologist a full month in advance for an appointment in December.
And then we spent five hours waiting on that Monday for a doctor who didn't even bother showing up to the clinic, even though he’s supposed to be there once a week!!
Instead, we were seen by some random doctor who couldn't tell us a single thing, so we ended up leaving without getting anything done. We were told to come back next Monday with all the test results gathered together, but do I even need to mention that the doctor wasn't there again either? 👎
His nurse in the office didn't even realize he had been out in New York City for several days already. 👎
That time, it wasn't even the same doctor from the previous Monday; we were handed off to a third person entirely.

Since my mom asked me to stay calm, I didn't go looking for the department manager. It's honestly shameful. 👎

It's a good thing I have the stamina to handle spending entire days wandering through hospitals, but it's wild how little consideration they show for sick people—who, by some miracle, happen to make up the majority of the people in these buildings.

And then someone will claim there's no money left, which is why our healthcare system is such a mess. During those five hours we sat there waiting, I managed to memorize almost every doctor, nurse, and staff member in that wing. Not because they were helpful, mind you, but because the crew spends most of their time pacing the hallways, gossiping, and grabbing coffee at the cafe. 👎

the saga continues...
I honestly thought I’d be feeling a bit more overwhelmed today, or at least find myself reaching my breaking point, 🙂

after that whole ordeal with AT&T and trying to pin down that specific start date for my therapy—well, fat chance! Now we have to go through with a PET scan, aaaaaaaa
it feels like we're right back at square one! 😱

I truly don't understand how the rest of you manage to navigate all this madness 🤷
I end up stopping by my primary care doctor's office at least once a week just to pick up various referrals. Thank God I have a doctor and a nurse who actually have hearts, leaving my paperwork ready so I can just swing by after work without waiting forever.

But for every single appointment with the oncologist, I have to schedule it manually. Even though they claim you can book via fax or email—which I did try, by the way—it simply doesn't work 😠 and then it's the same old song and dance: begging my boss to let me "just run out for a second" to handle something, and then having to plead at the front desk just to get on the schedule. If I hadn't gone down there personally yesterday to set up my mom's appointment, who knows when they would have even been seen while waiting for someone to respond to a fax.

It honestly scares me to think about what the logistics will look like once the chemo and radiation sessions actually begin 🤷
how does medical transport even work?

feralridge3 said:Yeah, you've got some too. 😉
Now that I've gone back over those notes, I actually ended up going with the MRI,
which doesn't really change much regarding the request I sent over to your email.

Honestly, honey, 🙂 😁

@feralridge3/">@@feralridge3
do you have an email 🙂

lonedriver123 said:Just head down to Medicare and ask for the "insured person's request for reimbursement of costs" form, then check the box under item number one regarding unjustified medical service charges...
Basically, you just explain that the medical facility wouldn't allow the urgent exam that was absolutely necessary due to certain circumstances! Attach some brief medical documentation (a photocopy will do) along with a specialist's recommendation or the specific reason why the emergency visit was required. Leave everything with Medicare, and within two months, they should have the money back to you. If they give you any kind of nonsense response, make sure you file an appeal.

Our hospital refused to authorize a routine (MRI) scan after a tumor re-operation, and that's how we managed to get our money back.

thanks for the reply 🙂
I guess I'll give that a shot

Maria Fox said:did you try calling Nemetov?
my mom actually had her tests done there through Medicare earlier this spring since the machine over at the Institute was out of order.
I see you mentioned calling other clinics, so I wasn't sure if you'd reached out to them yet either...

nobody ever picked up at Nemetov, and then things just got hectic again, so I haven't bothered calling them back.
never mind. I'll probably just get the same old response I got from everyone else: they've already hit their quota for referrals, or perhaps I can snag an appointment sometime next year.

tomorrow I'm going to go ahead and book something at one of the private clinics. there really isn't much of a choice left.
I read somewhere that some people were trying to get reimbursed by insurance...
if anyone happens to know anything about how that works, please let me know. I really need to watch every cent because this therapy is going to be a long haul, and who knows how many other random expenses are going to crop up along the way?

Angela Wright said:Medicol, there really isn't any 😢

Yeah.
I actually reached out to a few other clinics to see what the deal was, but they all told me they'd already hit their quota through Medicare. It seems like the pricing is pretty much the same everywhere you look, regardless of where you go.

I can't help but feel a certain amount of sympathy for people who find themselves unable to access decent healthcare just because of something as arbitrary as how much money they have in the bank.

I could really use some advice here.
Does anyone know where I can get a CT scan done quickly without breaking the bank?
The folks over at General Hospital told me their machine is out of order, and even if it were working, there’s no way I could get an appointment fast enough.
If I tried going through a major hospital system like Mayo Clinic, I’d probably be waiting at least a month, and I just don't have that kind of time on my hands.
I reached out to Quest Diagnostics, which seems to be my only real lead right now, but the total for the CT scan plus the contrast dye is coming out to $483
The thing is, this scan absolutely has to happen by next Thursday at the latest.

What should my next move be?

Sarah Johnson11🙂

I honestly think you really ought to sit down and talk with your mom—like, a lot of deep, meaningful conversations. I know from my own experience that when I'm left alone with my thoughts, the pessimism and those heavy moods start creeping in, especially when I get stuck in these non-constructive mental loops.

Before her surgery, when they let her come home for the weekend, she was just completely despondent. She was totally convinced that everything was over and that she basically had to say goodbye to life itself.🙄
So, there I was, just talking and talking to her all through that weekend, and yet... nothing seemed to work.
But then, out of nowhere, this one conversation—something that felt entirely trivial to me—somehow lifted her spirits and gave her a little nudge.🙂

After the surgery, she told me that our little chat had cheered her up so much that she actually went into the procedure with a genuine will to recover and heal.

And I'm telling you, I remember what we were talking about, and even now, that specific conversation doesn't seem particularly significant to me. But to her? It meant everything.🙂

restlessorca35 said:Based on what I've gathered from the Medicare website, it looks like there's no legal way to use insurance coverage to help out your own parents. It’s one of those bureaucratic hurdles that just seems to exist for no reason, isn't it? You'd think the system would allow for a bit more flexibility when it comes to family, but apparently, the rules are set in stone. 😢

Well, bravo. 😢

I honestly don't know. I think I'll just wait and see how things unfold before putting together a strategy, once we finally hear which specific chemotherapy regimen the oncologist decides to go with.

Angela Wright It seems like you're trying to share something, but the message didn't quite make it through—did you mean to quote someone, or perhaps you were just about to start a thought? I'm sitting here wondering if there was a glitch in the system or if you just hit send a little too early, though sometimes the most interesting conversations are the ones that start with a bit of a pause, don't you think? Anyway, I'm ready whenever you are.
Just putting the question out there. I'm sure there are plenty of people here who have actually walked this path and dealt with this before.
And let’s not fall into the trap of delaying our entry into the "ghetto"... honestly, our whole point is to "de-ghettoize" the entire issue, which is exactly why we have this forum, the association, and everything else we stand for.👍

It’s almost as if I already know the answer, isn't it?

It’s honestly a bit much how poorly regulated our laws regarding patient care and sick leave actually are, isn't it? Even the way caregiver seniority is treated—it feels like we've become a "cancerous wound" on the fabric of society, if you'll allow me to put it that way.
When we look at tackling this issue, we have to confront the reality that we're also dealing with a massive shortage of hospice care—something we struggle with here in America, too. Just one nation. It looks like they might launch a massive campaign for hospice and palliative care here in the States sometime this coming spring, assuming everything stays on track. Right now, we're just focused on gathering the necessary funds. 😁

If I can find the courage to step up, then count me in for the fight too. 😁

restlessorca35 Asks:
So, my GP dropped a bit of a bombshell on me last week—apparently, getting leave to care for a family member is strictly limited to just a spouse or a child. I was looking over the paperwork, and sure enough, the sick leave report only has specific sections designated for a husband or wife and kids. It’s one of those bureaucratic hurdles that feels so unnecessarily rigid, isn't it? If you happen to have a decent relationship with your doctor, maybe just sit them down and explain the situation; sometimes a little human connection goes a long way in navigating these systems. But if you don't have that kind of rapport, well, you're kind of stuck with the options on the table. From what I understand, if you're filing for something like spinal issues, you're looking at 14 days, whereas depression can get you up to 30 days without needing to go through a medical board review. It makes you wonder why the system is structured this way, doesn't it?

We’re honestly so lucky that both my mom and I ended up under the care of the same doctor—someone who actually takes the time to grasp the full scope of what we're dealing with. Since it's just the two of us, there isn't really anyone else to step in, which means the weight of looking after her falls entirely on my shoulders. Is there anything else? Just me.
So far, we've mostly just focused on the heavy lifting of taking care of a family member, though I’ve also been quietly considering how much of an angle we might take regarding depression down the road. 😬
For now, I’ve managed to get a decent handle on things within the company, but there’s this looming talk of "restructuring" hanging over our heads, which means I really need to be more strategic about how I handle my time off. It's all a bit of a balancing act, isn't it? I have to play my cards right with these absences because, at the end of the day, we all need the paycheck, and I simply can't afford to take any unnecessary risks with my job security.

I really need to double-check how that combination of unpaid leave works... hmm, let me think about that for a second.

Angela Wright said:Dear, I just wanted to say congratulations on having such an incredible outlook on life and for that wonderful post!🙏👍
If you're up for it, I’d love for you to post that over on our forum. www.zanovidan.com 😁

thanks Dorja 🙂
As for whether I'll actually get around to posting... I suppose we'll just have to see, won't we? It all really depends on whether the inspiration decides to show up.
Even though I signed up for this forum right away, I have to admit I’ve still been putting off actually stepping foot into that "ghetto." Is it just me, or does it feel like there's this invisible barrier keeping us from really diving in? 😁

So, I’ve been sitting here wondering—does anyone actually have a handle on how to best navigate the whole process of taking leave to care for a sick family member? It feels like one of those things where you're expected to just know the drill, but when you're actually in the thick of it, trying to balance everything, it's all a bit of a maze, isn't it? I'm curious if there's a specific way to regulate that kind of leave to make sure you aren't left completely stranded.
Even my primary care physician isn't entirely sure how many days I'm actually entitled to for caregiver leave to look after my mom right now. I'm staying by her side while she recovers from her surgery, just navigating the uncertainty of it all.
But how am I actually going to manage my sick leave later on, once the chemotherapy sessions start rolling in?

Does anyone know if there's any actual advice or useful info floating around on Zanovidan regarding this?

analogfalcon2 said:Of course, dear, don't you worry about a thing; once that initial wave of shock and panic finally settles down, I always find myself drifting right back to being my old self again.
You know me—I’m going to fight for him with everything I’ve got. And of course, I'll be doing it with your help by my side.😉

It seems like you might have sent that by mistake, or perhaps there's more you wanted to say? I'm here whenever you're ready to dive into the next part. 👍

I didn't really want to jump into threads like this, but Hat—get a grip! You’re doing this for your husband, for your kids, and for yourself.
Your husband was diagnosed with a condition that can be treated; the man hasn't passed away.

This is how I personally navigated the realization that my mother had stomach cancer...
On Tuesday, less than a month ago, her gastroenterologist told me, without any sugarcoating, that my mom had cancer and the prognosis looked grim. He added that while it feels wrong to say something like this in such a moment, we could only hope the cancer hadn't reached the vessels leading out of the stomach..

It was total shock. I spent that entire day crying, already picturing my old lady on her deathbed. It felt like she had already mentally moved herself there, too.
Strangely enough, I actually slept well that night, and then it hit me—wait, hold on a second. You can't just squeeze a human being into a mathematical model. Medicine actually has a very limited understanding of the human body. I mean, how many times have I witnessed doctors' assessments turn out to be completely off base? Not because they are bad doctors, but for a very simple reason: everyone reacts differently. No one can predict with absolute certainty how a human organism will behave in a specific situation.

But let me get back to how the story unfolded..
After the initial shock and that sudden mental clarity, I went out to gather as much information as possible. I started scouring forums and the internet, searching for the experiences of others who had walked this same path. Unfortunately, finding useful info was difficult because, as it still is, it’s often drowned in a sea of lamentation, weeping, and sorrow.
At the time, and honestly even now, that wasn't what I needed at all.

My mother also threw up her hands and started preparing her will and making lists of everything in the house, even picking out the outfit she wanted to be buried in. Okay, I get that you need to think about those things, but slow down—where are you rushing to, lady? Let's wait until we actually get all the test results...

As for how our circle took the news... most people reacted quite rationally. Honestly, I didn't realize how many families in my own workplace were dealing with someone battling cancer. People live with these illnesses for years. You accept it as a part of your life and try to adapt to this new reality of your body as best you can.
Of course, there was one gem in the extended family who, out of pure naivety, ignorance, and a misplaced desire to help, started throwing around stories about miracle workers and their "magic" potions 🙄

So, here is the summary so far, three weeks after the initial diagnosis:
In my mom's case, the tumor was operable; it hadn't metastasized to vital organs, though there were some metastases in the lymph nodes above the stomach. They removed her entire stomach along with part of the lymph nodes.
Right now, she's just sitting there chatting with a neighbor 🙂

Next, we're going to catch the oncologist to schedule chemotherapy. I've already told her it might be tough, but then again, maybe it won't be 🙂
We'll see..

When I think about what a turnaround this has been from that day three weeks ago when she had just "given up," compared to how she is now 🙂

What I mean is, you have to be rational and accept the situation as it is. Accept the change and adjust to it as quickly as possible. But don't go thinking it's the end of everything. Because it isn't. There's no need to break your heart worrying about what will happen in a month, two months, or a year. You never know..

redowl90 said:I'm honestly at a loss for words after watching this last night. To be fair, I had no idea what I was getting into—that’s because for the past two years, I’ve made it a point to completely avoid reading reviews or even glancing at trailers before watching something. Because of that, I went in expecting a cozy little drama, not a full-blown horror flick. And regardless of what anyone else says, this is definitely a horror movie. I have to admit, watching it alone in my dark apartment at one in the morning wasn't exactly a relaxing experience. 🙂

Anyway... My biggest gripe is that the movie constantly reminded me of The Others. If I hadn't seen that film before, I probably would have called this an outstanding piece of work. But as it stands, it just feels like a solid movie featuring an excellent lead actress. I think the director shows real promise (I'm not very familiar with his other work): he knows how to handle actors, how to build a great atmosphere, and how to actually creep out an audience.

It's worth a watch, but it certainly doesn't deserve all the massive hype it's getting.

I think I'd put my own impressions of the film like this.

Before sitting down to watch, I found myself praying to God that this wasn't just another cliché story about an orphanage and creepy kids. 🙂

The only part that actually landed for me was the ending, specifically with how everything unfolded and that final revelation of what was actually happening...