Wish We Could Turn Back Time.....

 Twenty-One Pilots is one of Babygirl's favorite bands. Sometimes on road trips (AKA Medical Excursions) she'll pick the playlist, and we'll hear, "Wish we could turn back time to the good old days, when the Mamas sang us to sleep, but now we're stressed out." 

I feel ya, Pilots. I feel ya. 

Babygirl had upper endoscopy today, to see if a reason could be found for the vomiting and weight loss.  The doc found a few odd spots, did some biopsies (results, of course, pending), and he noted that one of the biopsy sites bled until he finally clipped it (which, frankly, means nothing in particular medicaly but explains why a 10-minute procedure lasted more than half an hour). 

I took the entire day off to allow for the kinds of things that happen to us.  Sometimes somebody wakes up in the morning, looks at Babygirl's HISTORY instead of her date of birth and does a "you-need-to-show-up-here-2-hours-early sort of thing.  This actually happened on Friday, when they changed our arrival time from 3 PM to 1 PM so they could get the (inevitably negative) pregnancy test and a potassium level (which kinda matters if you don't want to accidentally kill your kidney-failure patient while she is anesthetized). 

I have to laugh sometimes. Based on insurance (Medicare) and diagnosis (on dialysis) they sometimes appear to be looking for a little old lady when they come in the room. 

The change in arrival time meant that I was smart not to work the morning. But it did give me a few hours to work on some other extremely necessary things.

Curly girl hasn't been able to work since before Christmas.  She has NEVER not worked, except for part of the pre-vaccine pandemic, when she stayed home to supervise remote learning for 3 kids (which is Work with a capital W in my opinion). Her illness has been severe enough that she is unable to much around the house, or really care for the kids.  For the time being, she is living with me.

This morning I made her sit down and apply for disability (and by "made" I kinda mean that I yelled at her a lot until she started it). It was a massive struggle for her to do given her level of exhaustion.

While she was doing THAT, I went on hold with the insurance company. I was on hold so long that I had 10 minutes to help Curlygirl with her stuff, 15 minutes to get in the car (with the phone ON HOLD) to pick up Babygirl from dialysis, and a good while after that to keep listening to the on-hold light jazz. When they finally came on, I discussed the latest Explanation of Benefits (EOB) package that had come in.

This truly delightful representative looked at the records:  No secondary insurance was listed for the new claims. To be fair, most of these claims were generated before I spoke to the insurance last time. We spent at least as much time on the phone as I did on hold while she went through claim by individual claim going back to the beginning of February.  She promised to keep working on them all after we hung up. 

I spent the rest of the morning discussing things with the doctor's offices and hospital billing.  I had to speak to our phone company (harder to speak to than hospital billing, TBH) about that fact that both Babygirl and Hubby now have their own damned services so why am I still paying for them???

I'm done with this day.  I mean, a lot got done but WHY does it need to be done in the first place? 

I need someone to sing me to sleep.

DeeDee

PS I'm sitting here finishing a LARGE serving of Pinot Gris.  A big shout-out to Citygirl for making me learn to appreciate wine that isn't swill. And I had a good cry before dinner. Some days you just need that.

Insult to Injury....

 After two days of endless calling to insurance and billing offices, I thought I'd caught them all.

Then the mail came.  The mail ALWAYS comes. This time it brought me a 14-page package of EOBs (Explanation of Benefits. Seriously, you all should look them ALL over carefully!). 

Some were from follow up visits near and far, all, again, reminding me that nobody knows which insurance is primary etc. Some were from her Dialysis Nephrologist. 

But the new news? Dialysis costs $8,010.89 per treatment.  My initial mental math was, "Wow! That's $24K a MONTH!"  Nope.  Nope. Nope. HARD Nope. It's 24K a WEEK. 

Three treatments a week since mid-January, slightly over 3 full months' worth.  45 visits so far. NONE of it paid to date. That's $360,490.05 (don't wanna forget that last nickel). That's more than a third of a million dollars.  For a full year? That's $1,249,699.  

Her transfusions? $2,272.33 EACH.  She's had 3 since January. Her blood counts are dropping again, just to add to all the fun.

We are just beginning to see denials for her ER visit in April. 

When I talked to the insurance, I didn't ASK about these visits and providers, so I have Not. One. Clue. as to whether or not they are in the resubmission pile. I mean, I shouldn't have to ask. To be fair these EOBs were produced well before my conversations with the insurance. 

Sigh.  I see a lot of wasted on-hold time in my future.

DeeDee

If You Have to Ask for the Price.....

 Have you ever window-shopped near Radio City Music Hall? There are never any prices on the items displayed.  And if you go in and ask, you are likely to hear, "If you have to ask me the price, you can't afford it." 

Medical care falls into this category, for SURE.  

I've been working with my insurance company since the EOB's (Explanation of Benefits) began rolling in with many, many indicators that they didn't plan to pay unless we clarified our insurance status.  Babygirl has my BC/BS, Medicare (for disabled folks, old folks, and folks on dialysis) and Medicaid (for poor folks, because she's an adult and her disability money is about $700/month after this year's, um, "generous" cost of living adjustment). Apparently, I have not been entirely successful in this endeavor. 

The bills are rolling in.  

The local ER doc sent a bill for $1653.

The local ER sent a bill for $1700, plus or minus.   For the record, she was in the local ER for 4 hours.

The ambulance company sent us a bill for $4700, mostly for mileage.

The prize-winner, of course, is UR Hospital. They sent me a politely worded request for a check in the amount of $147,639.33, with instructions to "resolve this matter" within 15 days.

Nearly $160,000 for 15 days. For a little over 10 grand a day, we'd have had a better time, well, nearly ANYWHERE. 

I was off yesterday afternoon (2 appointments for myself, thankyouverymuch), and spent 2 hours in between things on hold with insurance and billing offices. 

The problem is this:  When you have multiple types of insurance, there is a fight among them as to who is primarily responsible for these huge bills.  Receiving a letter from Medicare stating IN WRITING from the Federal Government that they are SECOND in line and that BC/BS MUST own up to the fact that they are FIRST has helped some.  Sending all of Babygirl's insurance information (which I now have stored in my phone!) to everybody has helped.

But BC/BS has been mightily slow to take responsibility for all of this, and we are past the 3-month mark on all of this.

Our BC/BS finally agreed, yesterday, that all of these things need to be rebilled.  Once they are (and this will take 30-45 business days to do!), everybody will be able to bill Medicare, and, finally, Medicaid for the balances successively remaining. There should be no residual balances.

THEN I will get to see what remains of our deductible and go after everybody for refunds on the bills I have paid for hubby and me since January 14.  I suspect that we hit our family's full annual deductible by 2 AM on January 1st.  

Today I am traveling to NYC (again) to a Long Covid specialty clinic with Curlygirl.  I'll be on the phone most of the way there, discussing with various doctors' offices and hospitals that things are being fixed, and we need more time.  If anyone balks, I'll put things on a payment plane for the minimum they will accept until things are fixed. I like my credit rating as it is. 

DeeDee

Endless Emesis......

 Babygirl began vomiting shortly after Christmas. We assumed it was a stomach bug, and that the vomiting triggered the rejection episode. 

But the vomiting never, ever stopped. Even when she was intubated and heavily sedated, she vomited. While she was in the hospital, she got around-the-clock ondansetron (Zofran), with haloperidol for breakthrough nausea.  They tried a bunch of other things as well.

Ondansetron is still a daily thing. Vomiting is still an almost daily thing.  Decreased appetite is, for sure, a daily thing. 

This is NOT a little thing.  Since the beginning of January, she's lost FORTY pounds, more than 3 pounds a week.  A week or so ago we had to buy an entirely new wardrobe, as she was reaching the "If I sneeze my pants will fall off" stage of the game. 

It was especially bad Tuesday-Thursday.  Not only was she not eating, she was also unable to keep fluids down, so we had a discussion about whether or not it was time to go to the ED.  The tie-breaker? "Well, last time we waited a little TOO long, so...."

We went. But not until after I had dinner. I've learned a thing or two: NO one benefits if I'm the hangry advocate. 

I don't spend a lot of time in ER's if I can help it. So when she was assigned a bed in the hospital's LECTURE HALL I was a bit nonplussed (she told me when she called me that she was in "the electrical hall." Took me a minute to puzzle THAT one out). Turns out, to handle the busy nights, they immediately do Covid testing on everybody, and put the less-critical negative patients in emergency cots and recliners in 15-18 curtained-off sections of a large room.  I arrived to find her in a chair, between a post-morphine woman who was chattering loudly at 100 MPH on her right and an elderly gentleman who was retching non-stop on her left. The curtains separated the patients but not the visitors. There was definitely not 6 feet between me and my neighbors.

We'd been there about 20 minutes when the area's RN arrived, clearly having had a quick review of Babygirl's problem list. "She's on dialysis? AND she's still on transplant meds??" Yes, Ma'am. "You'd be more comfortable if we put you in the corner by the Hepa filter." YES, Ma'am. Six feet all around and more complete curtain separation.  

IV ondansetron, a liter of fluid, blood work and a CT scan later: Labs unchanged from previous. No evidence of blockage or tumor. Doctor asking, "Has she seen GI? Has she tried Phenergan, Compazine, Haldol?" Yes, yes, yes, and yes. "I got nothin'." Well, okay, that's not what he said, but it's what he MEANT, LOL.

She felt better, and got through the next 12 hours without further symptoms. GI is doing endoscopy in a couple of weeks. I called her primary and asked if she could try dronabinol (synthetic THC, used for chemo/AIDS patients with vomiting and weight loss. You know, "pot pills"). He checked with the transplant team, and sent in a prescription. I'll get them today. 

DeeDee

Success....

 It's been a long day.  Long.  

Babygirl is fine.  They were, despite the very unpromising vein studies, able to find a vein and artery of suitable size near her left wrist.  The challenges of working with the smaller vessels stretched a 2 hour procedure to three hours. But the final result is worth it, sparing her upper arms for later procedures.  And the surgeon was very, VERY proud of himself.

I hate waiting.  And this was not at all a peaceful wait. I cried in the bathroom. There were two fire alarms, and FIVE stroke emergencies in the ED. There was a code in the infusion center.  I saw a body wheeling by while I was waiting to use the restroom. I watched puppy videos and random TikToks.   Staff in ambulatory surgery offered me a drink.  THAT made me teary (I told you before that I've reached the point where, if anyone dares to be nice to me, I cry, so be forewarned. 

I'm. Tired.

DeeDee

Lab Orders Should NOT Be the Thing.....

 Lab orders should not make us crazy. Yet here we are.

About 3 weeks ago (does time have any actual meaning anymore?  I have no concrete way of being sure it hasn't been 2 months since then) Babygirl had her outpatient transfusion.  Her hemoglobin hopped up from 5.8 to about 6.8 and gradually worked its way up into the high 7's, significantly better. But then it began a fairly steep decline, to the point where it dropped below 7, making the vascular surgeon uncomfortable with proceeding. Oh, and by the way, has she been cleared for this by her primary physician? Well, no, since you didn't request it, it didn't get scheduled.

So, the race is on.

Friday they let Babygirl know that she has an appointment with GI. On Monday. So I had TODAY only to rearrange my schedule.  Again.  

Tomorrow, the family doctor is squeezing her in for a pre-op visit at 6:30 AM. Yes, really.  And he got her set up for a transfusion tomorrow. I made sure to ask, "Is this a type-and-crossmatch? Last time it was a type-and-screen, and they had to redo the labs and wait an extra two hours to get the transfusion." I was assured that the correct labs had been ordered this time. 

We met the new GI doc today (and by "new" I would like to point out that his name isn't on the stationery yet - he's still a write-in LOL).  He ordered some blood work, suggested that a hematology consult would be a GREAT idea. He plans on doing upper endoscopy, as he is reasonably certain that she will not be able to tolerate the prep for colonoscopy, given her overall level of nausea. He made sure we had more nausea pills. He also said that if the Protonix wasn't working at twice a day that there was no need to take it more than once a day. He also said that switching to another medication in the same class is not useful. 

So we hike the half a mile of corridors from his office to the lab, and register for his lab work (ordered an hour earlier) and the family doc's lab work (ordered this morning).  The woman registering us said she saw labs from both doctors, and sent us back.  

When the phlebotomist finished, she put a bandaid on Babygirl and turned to leave. "Hey, wait - where's the red bracelet?" 

When anyone has labs done specifically to match them with a specific bag of blood, a red bracelet is placed on the patient with a special number to help avoid errors. Babygirl didn't get the bracelet with the first set of blood last time, and had to endure a second stick for the correct lab work to get the transfusion.

The phlebotomist looked me dead in the eye and said, "It wasn't ordered." We had to go out to registration, where the clerk said, "That's not what was ordered." 

Well....duck. 

I mean, it's not a crisis, exactly. And getting blood work done is no big deal, right? Except that we've already proven that she has TINY veins, and that they aren't in fabulous shape, and is it TOO GODDAM MUCH to ask that she NOT get poked twice for every ducking thing they order??

I generally don't call the on call guy if I can help it. But I called.  Twice, because there was no response when they sent a text (turns out the poor guy was just on call 3 days ago and didn't realize he was up again - somebody must be on vacation). He listened to the story, and said he'd call the lab to see what the deal was.

So, some unneeded education in the foolishness that is Electronic Medical Records.  Our system, when we order things, offers us the option of NOW/STAT or Future Order. We learned early on that the first option does not actually work, so if you want something STAT you put in a Future Order and write STAT in a little box.  Perfectly sensible. But if I put in a Future Order I am essentially ordering something for tomorrow. This is generally immediately visible, so if the patient goes to the lab same day, there is no problem.

Except, apparently, for the type-and-cross. THAT test, ordered this morning, will not be visible until 3 AM. So did didn't actually "exist" yet when we went to the lab. Clear?  DUCK, no. But that is where we are. 

Our remaining options are to get it done right before the transfusion and wait the extra hours, or stop at the lab on our way home from the doctor's at 7 AM. For the second second stick. 

Surgery is still on for Thursday. I think.

DeeDee

PS Not sure if I should call administration, or IT about this one. 

Fistulas and Other Fun Things....

 I mentioned in my last post that Babygirl had seen a vascular surgeon (more on that later, remember?).  Vascular surgeons fix problems with peripheral arteries and veins. (Cardiovascular surgeons do the central stuff.) So why go there?

Since the middle of January Babygirl has had a dialysis port hanging out of her chest.  It's big. It's uncomfortable. It's an alleyway from the outside of her body to the inside.  She can't get it wet (so Saran Wrap and cloth tape are standard equipment in our bathroom these days). She is DYING to take a shower. She wants to be able to swim when the season hits.

She needs a fistula.  

Fistulas (in general) are abnormal connections between one place and another. Rectovaginal fistulas occur during rough childbirth, and connect the rectum to the vagina. Colovesical fistulas connect the bowel and the bladder.  There are others, but you get the idea. What Babygirl needs is an arteriovenous (AV) fistula, a deliberate connection between an artery and a vein. 

Dialysis happens 3 hours a week for 4 hours.  Ordinary veins are not cut out to handle the volume of fluid that has to go IN and OUT of the needle. Veins just aren't that tough. Connecting an artery to a vein pushes arterial blood at high pressure, and makes it get bigger. And tougher. 

They scanned all of the veins in her arms to get ready for this. Anticipating that she will likely be on dialysis a while, and perhaps again after the NEXT transplant fails, the hope was that they would find a vein and an artery big enough to work with in her wrist, so that when it inevitably fails, they'd be able to place one above it in the forearm, and then the lower arm, then upper arm, and so on, using up available sites in her non-dominant arm before having to move to the dominant side (since during dialysis the arm with the needle in it has to be STILL). 

Sigh.

The veins in her wrists and forearms are all 1-2 mm in size, too too too TOO small to connect to the (equally too small) arteries.  So her initial fistula will be above the elbow, on the inside of her arm. It's not ideal. But it WILL be waterproof.

She had preop testing today, and, once again, her hemoglobin is below 7, not safe for a procedure that opens up an artery on purpose. 

Which takes us to the question, "Why?"

Her hemoglobin was in the 11's before the kidney died, and dropped like a ROCK when it happened (a process that should have taken some considerable time, honestly, not less than 3 weeks). 

So.  Is she bleeding somewhere? Is there some new issue that is stopping her from making blood despite IV iron infusions and erythropoietin replacement? She's been vomiting almost daily since we got home, and it was vomiting that apparently started the rejection. Everybody's been assuming that the initial vomiting was a "bug" and the current vomiting has something to do with dialysis, but.... 

All of a sudden there's talk of a GI referral, and a hematology referral.  Considering she has lost 30 pounds since January, I'm thinking that somebody needs to look at something. 

I DON'T want this surgery delayed. It takes a minimum of 4 weeks for a fistula to mature, and the fistula has to prove functionality with 2 weeks of use at dialysis before they can pull the port from her chest. That means that the port will be in place for a minimum of 4 months, which scares me a little. 

Surgery is schedule for a week from today. Dialysis is MWF from 5:30 AM to 9:30 AM.  The odds of them doing all they need to do by then seem small.

DeeDee