Posts by Angela Wright

Sarah Long86 said:Thanks a ton.

You get home from the hospital with a stack of diagnoses and a list of specialist recommendations, and your primary doctor just brushes you off—doesn't even bother to follow up. You call her, and she basically tells you you're "off her list" (you don't even know if it's been 15 days yet) and hangs up on you. WTF 🙂

File a formal complaint with Medicare and stop giving her any more of your time.😳, then go find a different family practitioner and request a transfer.

Hannah James76 said:Taking Reglan but it isn't doing anything... Thanks for the help.

Did you guys manage to figure it out?

Hannah James76 said:His doctor is an absolute DISASTER 🙂. She’s just repeating whatever they wrote in the hospital report... everyone is basically saying there’s nothing more they can do 😠. I’ve never even heard of those patches

Get in touch with
19 Drašković Street, New York City
Chicago Pain Clinic
Zoran Lončar, MD, Anesthesiology Specialist
01/46 97 000

Tell them you’re calling with a warm recommendation for Dr. Lončar from the New Day Association. He’s a dear colleague of ours fighting for palliative care here in America. Explain the situation—that your dad is in the terminal stage and is suffering, and that nobody seems willing to provide him with adequate relief. The doctor will be able to write a prescription for the patches.
Do this immediately!
If you can't get through to anyone, send me a PM and I’ll hunt down a cell number for you.

Reach out here too:
Dr. Kotnik will come for a home visit along with a nurse to assess how else they can help and to offer some solid advice. I highly recommend her. She was a lifeline for both me and Fighter Girl during our darkest hours.
As far as pain management goes, it has to be by prescription, unfortunately, because we're dealing with opiates.

Hannah James76 said:I’m at my wit's end trying to figure out how to help Dad... He’s vomiting constantly, and the pain has started setting in too. We called emergency services yesterday, but they refused to send anyone because apparently, "that's just how this disease works." We had to call a second time to get them to show up. His blood pressure was 85/50; they just gave him some Ketonal and left... He didn't feel any better, so he ended up going to St. Jude's... his Bilirubin is at 241 😢. He should be in the ICU, but he insists on being at home... They told us he only has a few days left and that he might just drift off to sleep or slip into a coma. How can I help stop this constant vomiting??

Your dad needs an IV drip. Call his primary care physician and demand that they actually do their job. A sedative might also be necessary to get that vomiting under control. Honestly, Ketonal isn't nearly enough for this kind of pain—he needs Durogesic patches. You need a doctor to give you actual guidance on what steps to take next.

Karen Brown said:Thanks for clearing that up,
Things are just going downhill from here. I found out today that they've declared some kind of new illness that nobody really understands yet. Apparently, this condition cropped up after his kidney removal surgery.
He’s fighting for now and staying sharp, but the disease takes its toll every single day.
Once I get all the paperwork, I'll post a link so you guys can take a look. Maybe we can save someone's life or at least offer some help.
I talked to my mom about arranging an autopsy, but she won't even hear of it. She says he’s suffered enough and she doesn't want anyone using him as a learning tool. Personally, I want the autopsy done so we know exactly what we're dealing with.

If the family refuses, will they still perform one since it's supposedly something new?
Where would I even find out?
I'm thinking about my kids and the future—I want us to know exactly what he was suffering from.
I'm at my wit's end here; am I thinking about this the right way?

Best to everyone,

Karen Brown, it honestly sickens me that you and your family are debating the ethics of an autopsy for a man who is still breathing!😲
I don't get this whole argument about doing it for the sake of your children knowing the truth, or this "humanitarian" angle, while on the flip side, you're essentially placing a living person on an autopsy table. Right now, he needs your love and your undivided attention. If he is indeed in a terminal phase and there's nothing more to be done medically, your job is to make his final days easier. This isn't the time or the way to handle this. To be blunt, reading about this in a space where people come seeking hope and fight for every precious second of life is frankly disgusting. There.

Your father is critically ill and facing multiple heavy diagnoses, each one of which could independently be responsible for what's happening to him. A single malignant diagnosis is a systemic cellular breakdown, not to mention that his current state could be a direct consequence of the treatments themselves. In that sense, your dad isn't some medical mystery waiting for a Dr. House episode like you're making him out to be; he is a seriously ill patient dealing with a mountain of diagnoses and symptoms. Searching for one "true" cause is like trying to find one specific drop of water in the ocean—it's a needle in a haystack, whether it matters for life or death or not.

Hannah James76 said:Bilirubin is at 167!!!! He doesn't know anything anymore, should we go to the hospital?? We just got the results back 😢

It’s obvious his liver is slowly shutting down, and unfortunately, a bilirubin level that high leaves lasting damage on the brain. 😢 Your dad is fading out, and the end is very close—I am so incredibly sorry to be the one to tell you this. 😢 You might hate me for saying it, but based on my own experience, my advice is to let him stay here with you until the very end. Make the most of this time; make sure he’s comfortable, tell him how much you love him, reassure him that everything is okay and that things will be fine. That is what he needs most right now... You can call 911 and see if there is anything else they can do to ease his discomfort, but honestly, I don't think the hospital will actually help much. All you'll do is separate him from his family and force him to spend his final moments somewhere feeling like a stranger.
I am so, so sorry. Hang in there, everyone.

Bryan Gray91 said:I'm wondering if there are any active clinical trials for colon cancer here in the States right now? What's the situation looking like abroad, and is there a way to track down that kind of info?

Go check this out.

It’s most likely a fungal issue, so you probably need more than just a cream—you should look into using those vaginal suppositories too (there are complete kits available that include both the cream and the inserts). But honestly, before you go buying anything, you really ought to see a gynecologist so they can run some proper tests and swabs first.

swiftbear86 said:Doximax and generics aren't even registered here in the States, which means they can't be distributed through standard channels. A pharmacy might be able to order them using a private prescription if www.fda.gov clears it (basically an official agency-stamped script). Since these drugs aren't registered, Medicare won't cover them either—with a few rare exceptions—so the patient is stuck footing the entire bill themselves.
Doxium 60x500 mg costs about $250$90, though I'm not sure if you can find it cheaper somewhere else.🤷
Besides physically going elsewhere, like maybe driving over to Mexico if it's cheaper and if they're actually allowed to sell it via a foreign prescription.🤷

If they’re selling chemotherapy drugs, I don't see why they couldn't handle this. Honestly, the issue isn't even with Medicare; it's with Pfizer, who hasn't even bothered to file the registration paperwork here in America. That's the absolute prerequisite for getting anything added to the Medicare coverage list. Why they're dragging their feet is anyone's guess.🤷

I’m with Harvey on this one.
What absolutely infuriates me about our doctors is how rarely anyone actually reaches out to specialists at world-class medical centers who might have dealt with a similar issue. I honestly cannot wrap my head around why someone would let their own ego get in the way when a patient is literally placing their life in their hands. For God's sake, we live in the age of the internet, iPhones, and instant connectivity. If patients can go online and seek second opinions from top-tier global institutions themselves, why on earth is it such a massive problem for "colleagues" here in America to do the same? In our healthcare system, there is often zero communication between specialists, even within the same hospital network.
My advice: put the pressure on them. Make them work harder to consult with someone who actually has the answers if they don't!

Andrew Peterson2 said:I’m starting this thread so everyone can jump in, since I haven't seen anyone else bringing this up yet.
My grandmother is currently buying this super expensive medication called Doximax to help with her circulation. If she skips it, her legs swell up and she deals with unbearable pain. Since Medicare doesn't cover it, she has to pay out of pocket, which pretty much eats up her entire Social Security check most months.
A friend of mine was asking why insurance won't cover certain drugs that actually work for people, and she just got told there are free alternatives covered by insurance that could replace these pricey brands.
Does anyone know what the free alternative to Doximax would be?

That’s what they call generics. It’s the exact same formula, just under a different name from a different manufacturer—usually way cheaper than the "brand name" stuff. In this case, you're looking for Calcium Dobesilate. Just ask the pharmacist which generic version is available at your local CVS or Walgreens.

Hannah James76 said:Thank you... It’s just important that he's home with us and that things feel at least a little easier for him this way.

Try to keep it that way—make sure you secure all the palliative care he needs right there at home. In the US, your dad is entitled to home health nursing services. Go straight to his primary care physician and request it. With a diagnosis like his, he qualifies for daily home visits, usually around 45 minutes per session. His wife can handle bathing and changing him, but having that professional help is a lifesaver. I can't recommend it enough because it takes a massive weight off your shoulders. Also, do yourself a favor and look into getting a hydraulic hospital bed and an alternating pressure air mattress with a compressor. Various medical supply companies, both public and private, keep these in stock and rent them out for about $133 a month. Seriously, get this gear; it will make life significantly more manageable for both him and all of you.

Hannah James76 said:My dad was released to come home yesterday, and I’m trying to make sense of his results and some new diagnoses. No one has really explained anything to us other than saying things are the way they are and that it's only going to get worse...
The diagnoses include metastatic hepatitis, lymph node metastasis, renal insufficiency, and thrombocytopenia.
Here are the labs: L 5.5, E 3.57, Hb 116, Hct 0.322, MCV 90.2, MCH 32.5, MCHC 360, T 70, SE 13, WBC diff: segmented 77.6%, unsegmented 5%, lymphocytes 13.8%, reactive lymphocytes 0, monocytes 3.2, eosinophils 0.4, basophils 0, plasma cells 0, metamyelocytes 0, myelocytes 0, promyelocytes 0, blasts 0, PV 0.59, INR 1.36, AST 318, ALT 221, CK 26, LDH 158, GGT 146, ALP 179, Glucose 6, urea 43.4, creatinine 423, total bilirubin 89.8, direct bilirubin 42.7, total protein 49, albumin 22, Iron 17.3, UIBC 19.7, TIBC 37, triglycerides 1.96, total cholesterol 3.88, HDL 0.36, LDL 3.06, amylase (serum) 116, amylase (urine) 99, Ca 2.08, Na 131, K 5.6, Cl 96, ferritin 830, CRP 18.3

Protein electrophoresis: albumin 46, gamma-globulins 30.

Thanks in advance!

There are metastases in the liver and lymph nodes, kidney failure (insufficiency), and thrombocytopenia—which means his blood isn't clotting properly because his platelet count is low.
As for the rest of the bloodwork, I don't know all the reference ranges by heart, but the liver enzymes are significantly elevated due to the metastases... honestly, what they told you is, unfortunately, the reality. 😢 You just have to patch him up and keep moving forward while you can.
Hang in there.

Roger Sanders said:A bunch of specialists stepped in—supposedly top-tier experts—yet we’re still stuck with absolutely nothing. 😢

Look, I wasn't suggesting that an MRI or some high-tech scan hands you a definitive diagnosis on a silver platter. My point was that these tools could pinpoint which area of the body is acting up, giving us a target for more specific follow-up testing.

The nightmare with neurological issues is that the root cause can be hiding anywhere. It’s like a faulty wire in a house; you might have a short in the kitchen, but the actual problem is a blown fuse in the basement. For instance, poor circulation could starve the pituitary gland or some other brain center of oxygen, causing it to malfunction even if there isn't a tumor, inflammation, or visible damage in that specific spot. Or maybe it's a slipped disc in your spine pinching a nerve that messes with a completely different part of your body. It's a massive, interconnected web.

I once had a neurologist tell me that you could run a hundred tests and come up totally blind, only for that 101st test to finally crack the case wide open. That's why I thought using something like a full-body MRI or advanced imaging could bypass the guesswork by scanning the entire system to flag potential trouble zones—assuming such a machine exists, of course.

There is no "magic button" solution, and frankly, it's for the exact reasons your doctor laid out. All you end up with is a mountain of lab results piled on a desk and a group of people staring at them, trying to make sense of the chaos.
If you want a second opinion, go to a tenth hospital; otherwise, this is all there is.

Roger Sanders said:I’ve gone to the doctor twice myself for an MRI, and both times they picked up on exactly what was wrong with me. Now I'm hearing people claim the whole thing is garbage and that the results are just total guesswork. I guess it all just comes down to luck.

😁

Is there any other type of device out there that can scan the entire body and pinpoint exactly where things are going wrong? I'm asking because we have someone dealing with neurological issues and they just can't find the root cause. They’ve already gone through the ringer with head CT scans and MRIs, but everything comes back completely normal. It’s incredibly frustrating when the standard tests show nothing, yet the symptoms are very real.

Is it actually possible to run a full-body MRI, or maybe use some other kind of imaging tech that scans the entire organism at once? My reasoning is pretty simple: when you’re hunting for the source of neurological issues, the culprit could be lurking anywhere. Relying on these hyper-targeted, narrow scans feels like taking a shot in the dark—it’s basically just guesswork if you aren't looking at the big picture.

Maybe if someone just tosses a handful of beans at you, you might actually stumble onto a decent diagnosis by sheer luck. 😉

Look, it doesn't work like that. Thank God it isn't that simple. Gather every single test result you have and go find a second opinion. You need a diagnostician who actually has some miles on them—someone with real-world experience under their belt.

dustymarlin10, asking about the logic behind vehicle inspections is like questioning why an inspection exists when everything looks fine with the car—except maybe the exhaust sounds like a foghorn even though there isn't a hole in it. Look, most people actually finished school and have a clue about what they're doing and why they're doing it.
Just let professionals do their jobs. If something doesn't sit right with you, ask direct questions and demand straight answers; you have every right to do that, just like your old man would. I’ll be the first to admit nothing is perfect, but I guarantee you they are cutting corners on things they absolutely shouldn't be skimping on.

Hannah James76 said:Nobody’s bringing up dialysis yet. Sure, you can squeeze out some fluid, but let's be real—that's not the same thing.

As long as this keeps going, they're just going to keep pushing diuretics to pull that fluid out.

Hannah James76 said:If he hadn't made it in yesterday, he would've been dead. Honestly, the fluid buildup was so bad it was getting dangerously close to his heart. They didn't perform a procedure to drain it directly, but he managed to flush out a significant amount on his own. It’s exactly what you all suspected—kidney failure. They gave him an enema today, too. He's doing better now; no more vomiting, he's eating, and he's even walking on his own. As for how much longer he can hold on like this, I just don't know...
Thanks for everything.

The real question is how much more strain his heart can take. Dialysis is an option, though.

ruggedbison19 said:That's the diagnosis, and now they're starting the specialist workups with a urologist. I was wondering if anyone here has dealt with this personally or seen someone close go through it? Thanks in advance!

It's a rare type of tumor originating from the adrenal tissue; I'm hoping someone reaches out to share what they know.
From what I understand, while it is uncommon, it tends to grow slowly and doesn't metastasize as aggressively as other types. Usually, the standard procedure involves removing the entire kidney where the tumor is located, followed by radiation and potentially chemotherapy. The silver lining is that it actually responds much better to treatment than most other kidney cancers. Once the initial treatment phase is over, you’ll be heading to regular checkups for about five years to monitor everything and make sure there isn't a recurrence. After that stretch, you can officially call it remission.

Robert Grant84 said:Mom just isn't grasping the reality of the situation; she doesn't truly understand her own illness. She has no idea she hasn't been able to stand up for two weeks now despite wanting to. Her speech is totally disjointed, she’s seeing things that aren't there, and every so often she breaks down crying, like she's having these brief, painful flashes of clarity where everything hits her at once.
The doctor actually listened when she said she wanted to go home and almost let her leave, justifying it by saying she was lucid when she said it—it's unbelievable... and we still don't even have a real explanation for why she fell into this coma or whatever you want to call this state.

My mom went through the exact same thing. It was the same kind of nonsense. She told me that Archangels Gabriel and Raphael had come for her, and that they had wings made of delicate lace, but she told them she wasn't ready to go yet because she hadn't seen me get married or met her grandkids... Granted, she was talking like that right after they performed a spinal tap, but after that, she was never the same. It was like she became dull; she lost her edge, her sense of time, and any grasp on recent events. She’d take an afternoon nap and then try to get up to make breakfast, completely oblivious to the fact that we were already sitting down for lunch. I actually had to turn on the TV so she could check the news ticker just to see what time it was, otherwise, she’d think I was messing with her or trying to drive her crazy on purpose. I still remember how hard she cried when she finally realized she had lost her sense of time.