mistyjackal842, I am so incredibly sorry, things are just completely overwhelming right now 😢 It’s obvious that the strike and this whole broken system are driving this entire mess. If you truly feel that Mom passed away because of their negligence, report everything and sue them. An autopsy is absolutely mandatory here, and they are legally obligated to perform one since she died in the hospital. I know you probably don't have the headspace for any of this right now, but if you're planning to take action, you need to move fast. Personally, I’d take this straight to the press. Outlets like the New York Times or local news stations live for stories like this. It’s unbelievable—they claim to be fighting for their rights while simultaneously trampling on the basic human rights of patients and their families. I am so deeply sorry. Stay strong; we're all standing right behind you.
Linda Patel21 said:I honestly don't know what smart advice I could give you, but if you have the strength, go down to the hospital and kick up a massive fuss. Threaten them with the news, threaten them with a lawyer, whatever it takes... just make sure they actually do everything in their power right now, because I truly believe Mom has a fighting chance to pull through. If you don't mind me asking, which hospital is it?
And what exactly does making a scene achieve? Is it going to make Mom feel better? 🤷Right now, there is absolutely no point in wasting precious energy on settling scores with them. This is the moment when Mom needs calm and steady focus. There will be plenty of time to fight them later. Most likely, she picked up an infection from the catheter—probably E. coli hitting her bloodstream—and now she’s dealing with sepsis. It’s not exactly unheard of, though I find it mind-blowing that they didn't jump on antibiotics at the first sign of trouble, especially since we're talking about an oncology patient here. It's unbelievable. 😳 I really hope the therapy is underway and being administered via IV. It’ll probably take about ten days to get this under control. Unfortunately, this kind of thing happens even with the best possible care. Personally, I caught E. coli every single time after a C-section or whenever I had a catheter; I practically lived on parsley tea to flush my system. For my own Mom, for example, that worked wonders, and we used parsley to help prevent infections whenever she had a catheter.
Dear mistyjackal842 and Ashley Murphy, I honestly don't know what to tell you 😢 .... just stay strong. I’ve been exactly where you are, feeling absolutely certain that we had hit rock bottom and there was no way out. I remember sitting at home, crying my eyes out while trying to sew a button onto a suit that Mom had chosen to be buried in. I must have sewn it on and ripped it off three times; no matter how carefully I measured, I kept messing it up, and I just couldn't wrap my head around why. Then, the phone rang. Dad called to say the doctors had decided to operate on Mom. They rushed her into surgery while she was basically in a coma, but an hour later, they brought her back fully conscious and aware of her surroundings. Because of that one moment, she got the chance to continue treatment and lived for another year and a half. I’ve shared this story here before, but it taught me that sometimes, when you’re at your breaking point and you just point a finger toward God, things can take a complete turn for the better. Don't lose hope!
Head and neck tumors are classified as rare cancers, which is exactly why I’m a firm believer in getting a second opinion from a top-tier ENT specialist. You can't leave this kind of thing to chance. Also, you absolutely need to look into therapy using Linux; while it's officially approved here in the States for colorectal cancer, clinical studies have shown it performs significantly better when treating head and neck tumors.
Honestly, I just don't get this supposed "reluctance" toward Medrol. Look, we're talking about an oncology patient here; the tumor is actively causing edema... using a corticosteroid is a medical necessity. It’s no different than refusing to give someone morphine when they're in agony just because of some "personal preference." You should probably go find a doctor and have them explain what that kind of "reluctance" actually means. I don't even know what else to advise you, because everything else seems fine—the strikes, the doctors, the high cost of meds—but the bureaucracy is just an unstoppable force, now and forever. Bad karma at work here.
Ashley Murphy said:They used contrast dye for the scan. We spent the weekend bouncing between ERs. The ER at Jordanovac turned him away, so we ended up at Mount Sinai Hospital since that's where we live. The folks at Mount Sinai decided he was just dehydrated, hooked him up to an IV, and sent him home. His specialist at Jordanovac knows the whole story (his internist keeps telling me this is just how it is and we have to get used to it). I’m actually heading over to Jordanovac right now for his chemo session without my dad.
If I can't get answers there, do I just head straight back to the ER? It's enough to make you snap. It feels like the doctors might kill him before the cancer does.
Try going to Jordanovac around 2:30 PM and look for the senior nurse, Sandra Karabatic. She also heads up the Jedro association for people living with lung cancer. Ask her for advice and help. She usually works from 7 AM to 3 PM. Personally, I’d camp out in that ER until they finally take us in, even if I have to cause a massive scene. If nothing else works, I’ll just take matters into my own hands and give him some Medrol again.
Get him to the ER right away and explain exactly what's going on; he’s almost certainly going to get cortisone. It’s obvious there's edema involved. You should also take the CT scan results so a radiologist can give it a second look somewhere else. Was the scan done with contrast?
Lisa White54 said:Yesterday was a total waste of time. I went in to pick up my mammogram results—which had been ready since Friday—thinking they’d be available on the patient portal, but nope, nothing there. To make matters worse, I had an MRI scheduled for 6:30 PM, so I showed up early, before 6:00, only to have the receptionist tell me I’d already missed the window for the mammogram results. Apparently, they stop processing those around 2:00 PM. So, what am I supposed to do with that? Fine. I called the MRI department to see if we could at least move forward. A nurse eventually comes out, brings me back, and then drops the hammer: they don't have the contrast dye needed for the scan. They can't perform the MRI, and they’re just going to reschedule me for next month. Honestly, I nearly fainted. I just had to push through it. 75 miles I'm not showing up just to waste anyone's time... but honestly, who can blame me? I should have just called ahead and asked first, just to be on the safe side. Honestly, I have no clue when I’ll finally get around to knocking out those last two tests—the MRI and the ultrasound-guided biopsy. Once those are out of the way, everything will be lined up, and then it's straight to the anesthesiologist and finally the surgery itself. I don't even need to tell you how I'm feeling. And I certainly don't need to point out that I had no idea just how unstable our healthcare system actually is. I know I shouldn't let myself get worked up, but honestly? Every single time, I’m just left staring in disbelief. It's the same story all over again. Honestly, the absolute worst part is this limbo—that agonizing state where you have no idea what you’re actually dealing with. Is it something significant, or is it nothing at all? It feels like scratching your nails against ice. And once I finally get the news... it’s obviously going to take some time to process. I just find myself hoping that if things do take a turn for the absolute worst, it won't be too late for me.
Don't waste your time—just go ahead and handle the search privately through Medicol. Once that's settled, you can go after Medicare to get your reimbursement. An oncology patient doesn't have the luxury of sitting around waiting. Just get the treatment done and focus your energy on whatever comes next.
Lisa White54 said:Angela Wright, my dear... I honestly think this whole thing is impossible. I just can't wrap my head around it—I truly don't believe it's cancer. At least, I hope to God I'm right. You’re 100% right when you say I'm still reeling from the shock. I can't just shake it off that easily; getting back on my feet isn't exactly coming naturally to me right now. I truly believe everything in life happens for a reason, but I honestly can't wrap my head around why I'm stuck in this endless loop of problems that just won't let up! 🙂
Love...
Look, we all deal with our own messes, constantly. When you're stuck in the middle of your own crisis, you start looking at everyone else and thinking they don't have a single issue—as if they’re just making them up to make you feel bad. Honestly, Ježić, I get that you're feeling completely overwhelmed right now, but problems exist specifically so they can be dealt with. Take me, for example. I just barely scraped by through that second pregnancy—it was like trying to thread a needle, but thank God everything turned out fine. Now, two months later, my gallbladder is absolutely throwing a tantrum. They found some sludge and lesions on my liver, and my liver enzyme levels? Good grief, they're all in the triple digits. I'm passing orange bilirubin, and I'm stuck on this strict diet, hoping things will stabilize. Even though I was discharged from the hospital with "normal" results, it clearly isn't that simple. 🤷 I was actually feeling pretty optimistic, thinking things were finally starting to look up and I’d be sailing into smoother waters at last. And then, boom—just like that. I guess it’s probably for the best, though. You know how it goes; you can't exactly brag about everything going perfectly without feeling like you need to toss a pebble in your own shoe just to keep yourself from getting too comfortable.😳
Shock hits you like a freight train, and honestly, it’ll stick to your ribs until everything is finally defined and you can actually start fixing things. That's why you need to handle whatever business you can behind closed doors and just get to work. Hang in there—don't let yourself spiral into pure drama, because people who act out of pure emotion end up making massive mistakes. It’s going to be fine.
Lisa White54 said:Hi there... I'm currently going through all my pre-op testing. I'm heading to the National Institutes of Health tomorrow for an MRI, and I already finished a mammogram—I'll pick up those results tomorrow, though I have no idea what they'll say. But I did get a chest X-ray, and honestly, it was another massive shock. They found a 15 mm metastasis in my right lung. I've studied all this stuff, I know the theory, but now that I actually have to apply it to my own life, I'm completely paralyzed. I feel totally frozen. On top of everything, I feel like I have to play the role of the rock for everyone else, constantly comforting them and convincing them that I’m going to be just fine. It feels terrible. I just hope I can somehow break through this mental deadlock.
Just look at that scan from Jordanovac and assume their radiologist read it perfectly. It doesn't necessarily mean it's a definitive target. And once you see that MRI, double-check everything twice. Also, stop trying to carry everyone else on your back. If you can't offer them actual help, don't exhaust yourself trying to provide emotional support; let them handle their own stuff. I am truly confident that things will work out for you. I have this way of looking at the pragmatics of life—how things unfold. My mother had to fall ill just so I could meet my husband. In that same vein, maybe your husband getting sick was the catalyst that will give you the strength to navigate your own struggle now. Hang in there. You'll start feeling better once this initial shock wears off.
mistyjackal842, I can tell you from my own experience caring for someone completely immobile at home. First off, Mom is entitled to full home health nursing care through Medicare, which includes daily visits lasting about 45 minutes since she’s bedbound. In our case, the nurse would often stay much longer and just do whatever else needed to be done. On top of that, my wife visits her every day after work to help with care. If you want, I can give you her contact info so you can call her. We also had a physical therapist come by three times a week who really worked with her. Whenever a diaper leaked, the therapist would even step in to help me change her. Regarding pressure ulcers, she didn't develop any major ones, but the skin over her tailbone would get dangerously thin from lying down so much. We tried using Granuflex, but it kept peeling off; honestly, we found that Hansaplast spray and Dermazin ointment worked best—the wounds would heal in just a few days. One thing that is absolutely critical for home care is a hydraulic hospital bed equipped with an anti-decubitus air mattress and a built-in compressor. You can usually rent these through local medical supply services for about $300-$133/month. Another option is checking with charities or hospice support groups to see if they have anything to loan. Along with the bed, you definitely need a commode chair on wheels. For Mom, that was way more practical than a wheelchair for moving her around the apartment. I could just sit her on it in the bathroom to shower, or wheel her right over the toilet so she could go directly into the commode. It meant everything for her psychological well-being, and frankly, it made my life a lot easier because there was less cleaning to do.
...just to add to my last point: America is a full-fledged member of the union, which means our language holds equal weight in the halls of Congress and is used across all official documentation just like any other.
I’m not buying any of this eco-friendly, "safe for the planet" nonsense they’re peddling. It makes zero sense to me—how can a substance so toxic it could probably survive a nuclear fallout be considered harmless to humans? It’s clearly poisonous, but the real question is just how much exposure it takes before things go south and what kind of permanent damage we're actually looking at. 🤷
If there had been any bleeding beyond what was expected, I’m certain the doctor—and especially the nursing staff—would have reacted immediately. What you're seeing is just some blood mixed with lymph and superficial oozing. It's going to be fine. Intensive care is reserved for people whose lives are actually on the line, and she isn't one of them. She's on the path to recovery. I strongly suggest you ask her doctor about whether Barocomor therapy might be an option in her specific case.
Austin Stewart2, I am so incredibly sorry; please accept my sincerest condolences. You all did everything exactly the right way. May you all find peace, and may you carry him with pride—both in him and in yourselves.
Lisa White54 said:Hi everyone.. It’s me again. This time, I won't be talking about my husband—thank God he’s doing fine and I don't have anything to report regarding him.. This time, I'm writing about myself. I have cancer. Breast cancer. I’m going in for surgery. I can't even begin to tell you how shocked I am; I'm still reeling from it. I just found out yesterday. So, here I am, back in the fight, but this time it's for myself. For nearly nine years now, I've been telling people that there is no such thing as an unbeatable disease and that everything will turn out okay. I really wish someone would say those words to me for once.
Oh, Lisa, what can I even say to you... it's obvious that life decided to hit you all at once, and honestly, it feels like all that built-up stress finally caught up. Try looking at this from a different angle: you have so much experience under your belt that you won't be wandering around blind like everyone else, which is already a massive advantage. Plus, this is going to forge an even deeper bond with your husband since you two will be leaning on each other completely. He’s going to be your rock through all of this. You’re going to pull through—there's no way a woman of your strength wouldn't. 😉 What exactly did the test results show?
You can pick those up at any local pharmacy, and they go by the name Urgency. If I recall correctly, he probably dropped about $33 on them, but no more than that. I actually ended up needing them myself to keep an eye on my protein levels during pregnancy, though they’re useful for plenty of other things too.
Paul Walker28 said:I heard about limb lengthening surgery the other day, and now I’m wondering how the muscle actually reacts to that. If you lengthen the bone, doesn't the muscle stay the same? Like, if you were to extend a leg by 2 or 4 inches, what does that even look like? Does the muscle just stretch out or what?
Those surgeries are pretty rare and the outcomes can be unpredictable. Nobody is out there adding 4 inches to their height; we're talking about small adjustments of an inch or two. They use external fixators—kind of like what you'd see for a serious compound fracture involving metal pins and screws—to gradually increase the gap. That slow expansion is what allows the muscles and tendons to adapt over time.
Donna Brooks18 said:Guys, I’m looking for answers but coming up empty... is there anywhere where people talk about how to actually deal with this waiting game for test results? I’m just sitting here waiting for my labs to come back... everything is still a giant question mark right now and honestly, it’s driving me a little crazy.
The best way to handle this is to operate under the assumption that you have absolutely nothing until they confirm otherwise. And if it turns out you *do* have something, then you deal with it once you know exactly what it is and tackle it the way it needs to be tackled. Get a job or focus on the immediate tasks you've been putting off. Waiting for results and dealing with illness are just parts of life—they happen to people just like they happen to anyone else, along with a million other daily struggles we all have to manage. You'll get through this, and things will eventually settle down.
Alex Hayes2 said:Hey everyone, I haven’t been active on this thread for a while because my father passed away just a month and a half after his diagnosis. We laid him to rest yesterday. I honestly don't know what to say other than thank you to everyone here; I haven't encountered this much genuine humanity and warmth in one place in a very long time. From the bottom of my heart, thank you to everyone who so selflessly tries to help strangers and offer comfort and hope when people need it most. I'm going to miss this community terribly. Everything happened so fast that I still haven't fully processed everything that's gone down. I guess it was just meant to be this way. I wish you all nothing but the best in life. Keep fighting. My dad never stopped fighting until his very last day—he was a true warrior. You always have to fight and hold onto hope.
I am so sorry, dear 😢 I lost my aunt about six months ago. She gave up, she just surrendered... it left me with such an indescribable sense of grief and heaviness. She could have had more time—quality time—but she just didn't want to keep going. Be proud of your dad. Honor him with a peaceful heart, because you did everything right.
Dear Susan Carter4, I am truly sorry; this whole thing just got unnecessarily complicated. I honestly can’t wrap my head around what nonsensical reason they had for not removing her uterus. In my opinion, that’s likely the main reason she's facing metastases now. She’s looking at chemotherapy ahead, and the outcome is anyone's guess. Please, stay brave and fight for every single new day. No matter how grim things look, all is not lost. Hang in there, both of you.