Most of you who recognize my name know that I hang out here (mostly because I really like the comments section) and you’re well aware of my contempt for that disingenuous stuff called Medicare Advantage. Because I think that the plans take advantage of you, and their vastly limited network means that by the time you’re 200 miles from home, nothing is in network.
Also, any plan that tries to tell you that their best benefit for a hearing aid for they will subsidize attaches to your ear and looks like a fly is always buzzing next to it should immediately be suspect. Buzz off, my friend.
It’s exactly the sort of plan that will make someone walking around with 6 stents (like me) reluctant to travel very far, because I don't want a live in Bankruptcyville. Disabilityville is a tough enough town for us, thanks.
Matter of fact, Disabilityville is the reason why Honey (my beloved spouse of 42 years) and I are now stuck in the corral of Private Insurance Disguised As Medicare…which is not a thing I wish to complain about (for once); no, I just wanted to relate this story about how not all Advantage Plans specialize in sadistic endless cycles of Denial, Delay and Would You Just Die, Already? Not today. Today we are not feeling taken advantage of in the least. Turns out that we (meaning Honey) just needed a better plan.
This missive is probably brought on by a combination of amazement and relief, combined with a heavy dose of gratitude because Honey gets to have a leg to stand on. You have to love a guy who has been immobilized per doctor’s orders for a couple of months and promptly chooses to go fetch his own darned ice cream bar from the freezer, never mind if it hurts. And he smirks about it, so glad to have made it to the other side of this sincerely unpleasant couple of years.
Short background:
I like my doctor and wanted to keep him. We have a long relationship based on mutual respect and me not lying to him. So far, I’ve kept him for about 30 years. To me, he is still that guy I can call and see the same day, and he’s always been reasonable about head meds and responsive to my needs. And he was never less than sympathetic, having seen me for numerous skating injuries over the years. He saw me after Honey first got sick and we didn’t have insurance; he just forgot to tell the billing office. He’s one of Those Doctors. He was my in-law’s doctor, before they passed on, years ago, and my kids see him; he really is a genuine Family Doctor and so I didn’t really think too hard about what might happen if Honey or I needed serious medical care.
I don’t mean the kind of serious medical care that where you fall on the floor, clutching your heart (turns out that really does happen), and you have no choice but to go where the paramedics take you.
I mean the kind of thing that is more insidious, requiring a whole lot of hospital and multiple doctors’ time. Pain and suffering added at no extra charge. Bonus. We honestly thought that this wee leg thing of his was just regular old people stuff; when you get a bumpy thing by your knee, your first thought is some vein clinic. Old people Issues.
Your last thought is sarcoma. Come on, Life, you already cursed him with bladder cancer years ago, why you always picking on my Honey?
When we first discovered Honey had sarcoma, several things had already happened to my favorite doctor and his small, pleasant office of a few physicians; you guys know the picture of the little fish being eaten by the bigger fish, maybe 7 fishes worth? I think that’s what happened to his nice office. It got poisoned by Venture Capital, and suddenly, instead of walking two doors down to the lab, we were driving 15 minutes to the Fancy Lab and Test Place where no familiar faces were to be seen. I would demand mileage reimbursement, but I suspect that red lights go off and sirens wail in the background every time I call Honey’s insurance company, so why push my luck any further?
And I do not want to talk about Venture Capital moving 98.3% of their offices and participating hospitals at least 45 minutes away from our home. It wasn’t like that before The Vultures descended.
So Honey and I read the test result that contained the vile “sarcoma” word before we saw Doc. In the well-meaning haste to make one’s medical records instantly available, the downside is that when there is bad news, you don’t have a context for How Bad Is It? The answer turned out to be Bad Enough. No vein clinic for you. pal. That ability to read results before you see your doctor next can cause all kinds of angst, especially in this case, but since I was going to see Doc for something the next day, I just mentioned the Unfortunate Result to him, and foolishly thought that surely everyone would feel the same urgency about Honey’s diagnosis that we did. I remember sitting on my hands so I didn’t start waving them and shouting.
Even if Doc felt the urgency, central scheduling and referrals were slow in responding. Like at the speed of a not remotely frightened turtle. We had many questions for people, and my first one was “What do you mean you don’t have an opening for 2 months?” Cruel and usual venture capital punishment, I guess. I did start waving my hands and shouting then. Apologies were made for my sarcasm, but you know, television warps perception.
On TV, someone gets cancer and it’s Very Serious and they see someone Immediately, even if it’s just to explain that it’s terminal (on TV, that’s the usual story line, anyway.)
Thus began the Not Remotely Funny comedy of errors, delays and denials. First we saw an oncologist that was so befuzzled that he couldn’t figure out how to work his own computer, and he ordered a bunch of tests that were done the previous week. He didn’t listen when we said that. He also didn’t seem in any hurry to formulate a treatment plan for Honey’s leg, which by now had a noticeable lump in it.
The old guy did mention that “it would be a good idea” if we could see a “real specialist” (while I’m thinking, “You’re supposed to be an oncologist isn’t that special enough?”) and he named someone at one of the Fancy University Hospitals downtown. Or This Other Guy (who also wasn’t in our plan). Old guy (and nearly every other doctor in the world) often completely fail to take into consideration the limitations of their patient’s Venture Capital Insurance (their motto: Hurry Up And Die), and we leave his office, swearing never to return, thus starting us on our journey toward finding a doctor in network (a very holey network, notwork was more the case) who would eventually remove the (by now) several tumors in Honey’s leg. Our alleged advantage plan definitely offered a limited selection.
We got passed around the practice like a plate of crudites that consisted of bad fish; nobody wanted to touch him. Radioactive spoiled fish. Another few months rolled over by before we lucked into an oncologist, who also told us that we should go see this Leading Specialist on this sort of thing, and she looked at our insurance and said that we were entitled to a one time Outside Consultation with this Sarcoma God. She would get on it right away.
She said that it would be best if we went to see him, because he would help her come up with a Treatment Plan, suggest medication (chemo), and maybe tell us what to expect out of this thing.
He did. He didn’t sugar coat it, said that this was some vile chemo, but it was most likely to work.
The guy recommended the most intense inpatient chemo (which the insurance initially denied, because they don’t do inpatient chemo, don’tchaknow), but our teeny, angry, doctor, fully fed up with this Venture Capital patient review committee trash imposed upon the doctors, insisted that this was the only way. She later harrumphed to me that she had to go stand before beancounters and justify this decision and wow does she hate the people that own this place. I swear when I would mention venture capital, she would spit.
Recommendation was 6 courses of chemo, 5 days inpatient, go home a couple weeks, come back and be poisoned again, repeat. Not a party, but a chance.
But the best laid plans do not often come to fruition. No, what happened with round one was that he got sepsis (again) and the 5 day stay turned into 3 weeks. The PTSD was on him and he was getting hospital psychosis, on top of the heavy duty chemo drugs. Scary times.
The second stay was marred by social services coming to tell me that we didn’t have insurance; it seemed to have been switched over at the beginning of the month. Why yes, of course I am going to cancel or change insurances in the middle of a chemo treatment, that's crazy, the insurance company is lying; they are seeing us as a liability, so they just cut us off. Forcing them to reinstate us involved 5 phone calls to 5 different people, who had 5 different stories, and a call to CMS, telling them that one of their programs seemed to be not only off base but completely out of line. We got the insurance back, but it was a hellish week we shouldn’t have had to go through. Venture Capital. Feh,
The chemo, though brutal, did help shrink the tumors, and we also got some radiation prior to chemo that also shrank the tumors some more, at least 2 of the 3. Except for the one on his calf. The chemo, we were told, killed many cancer cells, so that’s good, but we’re sorry that he fell out of bed this round of treatment, because he’d lost his mind, and we feel terrible that he bumped that tumor enough to break it open, but because this happened, we can’t do the 5th round of chemo until the skin heals...you guys need a wound specialist.
It took us 2 trips to the doctor’s office to beg for a referral, 4 tries to get in to see someone who finally told us they didn’t take our insurance after reviewing our financials with us on the phone, sorry that someone recommended him, but he couldn’t help us. The entire attitude of the place made me walk out of there like I was angry at the ground, and Honey shushed me, which made me hiss, “They don’t give a fuck about you, you think they give a care if I walk a little loudly?”
Two months later, with this now putrid stinking mass of death on his leg, we were finally able to locate a wound clinic that would take him. That was in mid-December, by then we hadn’t seen anyone about his condition since before Halloween, and I already knew that if Honey didn’t get better insurance, he might die, and most certainly would lose all or part of his leg.
Or at least that’s what the doctor that saw us at the wound clinic said. “Oh, that’s bad, it’s got to come off, I know this guy at Fancy Hospital who can take that right off for you.” Encouraging guy. By then, we have been placed into some kind of purgatory by our health insurance. The surgeon we see doesn’t want to do the operation, and the plastic surgeon he sends us to is a nice lady who does nose jobs for a living, I think, and she admitted she wasn’t qualified to help us. Zero people seem qualified or willing to help us.
We are now nearly 2 years into sarcoma, that slow but sure killer, and I am pretty sure our insurance does not want to help us at all. Especially since the You Canceled Your Coverage Lie. The lie that was proven to be exactly that, because I had the presence of mind to ask for the record number of the conversation where I pointed out that if they couldn’t meet our needs, we could leave, but at no time did I say we were withdrawing from the plan.
CMS was really displeased about that, and it pleased me greatly that our former Advantage Plan that tried to drive a stake through Honey’s life is now judged to be “financially distressed and having to lay people off and reduce employee compensation.” No wonder our oncologist to them to put it where the sun doesn’t shine, she’s outta here on the 31st of October. I wanted to cry. She was on our side. And then we learned our radiologist was also leaving the practice at the end of the year. The guy who shot me in the back for my sciatica left, too. Lots of doctors leaving. Seemed ominous to me, especially since they were already assigning patients appointments months away. Or, like the wound clinic debacle, just ignoring the entire problem. Sit home and smell like death, buddy, we don’t care. Sure, Venture Capital, it’s not like you’re dealing with sick people. Just lousy cash flow, right?
Open enrollment finally comes around and I call the Medicare people and tell them that I need Honey to be in This Group, with This Hospital and This Surgeon, and whatever PCP they wanted to give us, we’d go along with. Turned out they assigned us a PCP that no longer worked in that office, and I worried about that, because gatekeeping and pushing papers is the name of the game, and having no PCP to sign papers could slow things down considerably.
It’s now March. We still haven’t seen a PCP, but it seems like we’ve been assigned to the Old People’s Medical Office not far away. With some doctor, who tried to decline us because Reasons (mostly Honey’s lack of ability to get to the office, and wowzer, it’s February and this guy has spent a quarter million dollars already, so maybe we don’t want to take your Honey after all.)
I sweetly remind them that we were assigned to her office by our insurance carrier, and that it is not really a good idea to decline to go along with the assignment, that vindictive clerks could kill their cash flow for a month or two just by losing claims, and so the office decides they can wait til he can ambulate a little bit before they go all huffy about him again. Don’t argue with the former Medicare bookkeeper. You won’t win.
For some reason, our parting gift from our oncologist was an approved (?!) visit downtown to see the Very Surgeon that had been recommended by several people qualified to discuss the subject. What with the guy being a surgeon by trade, he was keen to excise the painful mess that had turned into a weeping black thing the size of my fist. Two years of being mostly ignored and shuffled like so much paper made us suspicious when he said that he would be happy to remove that thing that made sitting in the same room with Poor Honey such a trial to everyone’s nose, and the sooner the better. Like half a month into our new insurance. Should have fought less, switched more.
We talked about our possibly suspect insurance and, as I said, I picked my specialists and made the insurance company find us a PCP. since the first assignment was their error. The doctor handed Honey’s new insurance card for the following year to one of his assistants, and asked her to please check for him, because he would really, really like to help us.
Somehow, Northwestern bulldozed the new and Much Nicer insurance company into doing this operation on January 17. We spent two years mostly shuffled around like a pack of cards, getting nowhere and suddenly this guy has a surgery date for us, our insurance is valid, and he’s got a fantastic plastic surgeon that will do magic and he will walk again. If we are lucky and careful at home. Nobody guarantees anything, and I understand that, too.
3 days after tumor removal this plastic surgeon remade his leg out of ligaments and skin grafts. She was amazing, that place is full of show off physicians all vying to get into the Society Of The Best Surgeons Ever in some weird internal private race to be The Best, and everyone was never less than helpful and polite. (Which is a 2 way street, even in medicine. Don’t peeve the nurses.)
I took Honey home for a week and a half, and when I took him back for a follow up, the plastic surgeon shoved a pokey stick about an inch into his still open wound, and announced that, sorry, he would be a guest of this fine facility immediately for antibiotics and a lovely open and clean out infection procedure. Twice. On Super Bowl Weekend. Which Honey was looking forward to watching on his 85” TV At Home, not stuck in the hospital, home of tiny TV’s and no rewind. The lightning storm the second night post admission blew his TV out, and Staff realized that it was important to him to have TV, and we switched rooms 3 times in 2 days. And nobody complained about having to move everything, they seemed as annoyed by the TV issue as Honey was.
Turned out his room had a 45” TV, so he didn’t suffer overmuch, aside from not being home.
We were discharged a week and a half later with orders for wet to dry dressings twice a day. What a party. But a thing I have experience with. And then the IV meds arrived, new nursing stuff to me, and before I knew it, we were spending a couple hours a day doing bandages and IV things. The government gives me $1.36/hr to do all this. And it turns out that most of the medical items we needed, curlex, ABD pads, medipore tape, 4X4’s are all cheaper if you just buy them from Amazon, This is mostly true. Pay Amazon or pay the insurance company their copay. I have comparison shopped. Usually Amazon wins the price game. Not to mention the bit about how I can’t leave him alone at home, and Amazon delivers fast. Those 4 ABD pads they sent us home with will last 2 days, and the medical supplies didn’t show up for another 2 days after that.
The wheelchair allegedly ordered didn’t ever show up, and so we Amazoned again, finding a reasonable wheelchair for $150. I noticed while at the hospital that most everyone who has their own wheelchair has this same model, maybe in a different color. Walgreens wants about $300 for the same thing. You’re killing yourselves, guys.
I’m not annoyed with the insurance company for their lack of discharge planning...even though I needed those ABD pads 3 days ago, not when they felt like shipping them. You medical supply companies need to get on the discharge planning stick faster than that or you’ll lose more business.
We spent a couple hours each day on a mission to stuff him full of enough antibiotics that the infection in his leg wouldn’t come back. It did not. And the day I was able to pull the dressing off his leg without the assistance of saline, I felt like we’d won the lottery. Closed up at last.
About 6 weeks later, we go see the doctor that removed the tumor, and he says, “Hmm, looks like you keep this leg,” and a couple days later we venture downtown again (where parking is the equivalent of a copay) and the plastic surgeon takes his stitches out and tells him he is free to limp around. I ask her to be kind because the last time she poked at him she traumatized him so much, he stuttered for 3 days.
She takes the stitches out, and it’s not too awful this time, just a couple pulls, and wow, he has something that even looks like a leg. Hobbles well, too. Honey is thrilled and I am, too. We just gained 2 ½ hours a day that used to be given over to leg care.
Before admission, the hospital financial department called us with an estimate of our bill portion. Zero hospitals have ever done that for us. It’ was not an altogether unfortunate amount, and certainly a miniscule fraction of he total charges. It costs a lot of money to keep a leg, I guess, and Honey is rather attached to his. “I like it. I’ve had it all my life,” he says.
The difference between the privately owned Enormous Hospital Downtown, combined with our new and improved insurance coverage, and the lackadaisical (I am being kind here) slipshod approach that the Venture Capitalist takeover and too-quick expansion with lesser locations Revenue Generating Medical Experience (My oncologist and radiologist’s offices are In an abandoned grocery store, really?”) is stupefying.
I know things are hard for my regular doc, because I asked him how long he was going to hang around this dump before he retired, and he told me that he has 3 more years. He’s not an incompetent guy, and he really cares about his people, so I try not to think too hard about how much happier he seemed before the Rude Takeover. Lots of people hate their jobs, but I don’t think that doctors should hate theirs. Not relevant to the story here, but the doctors have about had it with Money Medicine, I think.
I expect Venture Capital to offer new doctors some kind of loan payoff benefit as incentive to sign on with their outfit, if they’re not already, albeit with more strings attached than a marionette. Hideous.
Maybe I was wrong about Advantage. I’ve been wrong before. Often. Maybe there is such a thing as a decent Advantage Plan. I’ve got a man limping down the hall with a walker and no dressings on his leg. I think for sure there’s a difference. Companies have to make money...but not by trying to cut off your insurance while you’re in the hospital. Or denying your legitimate need for care. Dragging their feet, hoping you die… With these new guys, it seems they would just like us to get better and go home. Which is where we belong.
Many cats miss Honey when he is in the hospital. Every night I’d go home without him, there would be a pile of disappointed cats at the front door. Especially Roger, pictured above. Honey is his Man.
He’s mine, too. And I want to keep him.
Thanks for reading.