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Frustrated with (choose one): Paper Pushing Bureaucrats, Medicaid, Florida's Governor

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Posted 4/3/2012 11:24 PM (GMT 0)
Mike and I are in Miami for his 11 month check up.

As mentioned in an earlier post, his labs are good.  AST and ALT both 20!  Great.

He will be seen by his consulting docs and transplant  folks to make sure all is well.

Today he had a Transthorasic Echocardiogram.  He has a bum aortic valve. They check it 3 times a year to decide when it needs to be replaced. (Soon.) There are better protocols coming on line for that, so the wait is really good. They can actually put the new valve in through your artery without opening you up!  They only use this protocol it in some cases just now, but it will be the standard in the next year(s).  the cardiologiest will talk to us about the results tomorrow afternoon.

Tomorrow was supposed to be the cancer check in the morning.

But we got caught in a SNAFU today.  And I am beyond frustated.

Some officious clerk called us today from the Insurance Department (HIS NEW PRIMARY CARE DOC IS THIS WOMAN I THINK) to say that they didn't have the authorization from Medicaid for his MRI tomorrow, so they were cancelling the appointment.

What?  We made this appointment 4 months ago. We drove 125 miles (each way with gas almost $5 a gallon).

This woman says that Florida Medicaid now reqires approvals each month and they sent the paperwork the 1st of April and it must be too soon for the approval to come through.

The MRI has been rescheduled for May 9th. 

Well, say I, shall we get that approval going on time for May?  Or will the April approval be good for May?

Oh, says my evil nemesis, it will be good.

What? Which means if someone got off her behind in MARCH, she'd have the paperwork in order for the MRI tomorrow.

I think this is just the beginning.  Gov Scott of Florida is talking about more ways to cut Medicaid expenses right and left.  He wants this care MANAGED.  Hiring the inept processors seems to be his first strategy.

Evidently Medicaid patients will not be seen any month until the second week (what?).  That can't be right.

That MRI machine will sit empty at 11 tomorrow...instead of having a patient in there.... 

Attempts to get an appointment later this week failed...evidently they are booked up with folks who have private insurance.

I should be more positive. His labs are good, he is feeling good. Surely he doesn't have another tumor.  And I should be so thankful he has gotten so much medical help on Medicaid already.  BUT if there is a tumor in there another 6 weeks will make it...bigger...and what?  Easier to see?

I feel like Mike is getting the run around.  Like they change the rules every other day.  We are happy to be rule followers, we'll do whatever they want done.  Let's figure out what that is and DO IT.

Later this week he has a Hep C consultatation and post transplant.

Carol

Posted 4/4/2012 12:02 AM (GMT 0)
Carol,

I can relate to your frustrations, only mine was with Medicare. I have a pancreatic cyst which has grown from October to January. Instead of doing another EUS with fine needle aspiration ( I Had one in October) the docs ordered some blood tumor tests. I get to Qwest to have the tests and am told as they are about to draw my blood that Medicare may not pay for them, and I must sign an ABN. Of course, a month later Medicare denies payment saying the tests were not medically necessary. I called my Nurse, and she thinks Qwest may have submitted the wrong diagnosis code for the tests because they were added to my monthly liver labs for UNOS. She tells me she will call Qwest and get it corrected. Qwest resubmitted the two tests last month. Now, I get another MSN from Medicare saying the tests still are not necessary, and they won't pay.

Now, if the Docs had decided I needed another EUS, it would have been totally covered no questions asked. However with my clotting problems, they did not want to put me through it again if the blood tests were normal. Now, I have to get my doctor to write a letter of appeal to Medicare, which Medicare will probably deny because Qwest forced me to sign the ABN! AARRGGGHHHH!! mad

Post Edited (susie_sassafrass) : 4/3/2012 8:50:07 PM (GMT-6)

Posted 4/4/2012 12:09 AM (GMT 0)
GRRRRRRR.

Susie, I'm so sorry.

Tonight I am in a snit and now I'm in a double snit.

Rooms full of clerks generating a mountain of paperwork so as not to provide medical services that physicians deem necessary.

ACK.

Carol

Carol
Posted 4/4/2012 1:59 AM (GMT 0)
I have my own vent on here somewhere...about duplication of service...which it IS and is NOT necessary. Wound care nurse and Home Health Nurse a day apart. My open wounds and edematous feet and legs only need to be redressed and rewrapped every 2-3 days, not every day. But each contends they are the one to be seen. Not only am I suffering physically and the decent meds that were prescribed are gone, but I have to straighten out their appts. for them, too. Double ACK!

Hugs,
Connie
Posted 4/4/2012 3:02 AM (GMT 0)
 Yep , Your friendly little piggy has contemplated the Medi-snare situation for awhile now and it turns my inards thinking about it . My hospital is running out of patience with me nickel and dollaring them and has sent me a warning that service fees will be collected up front for my next visit . I have paid out of pocket for most of my medical visits on a payment plan and getting medicare has always been a option but my Xifaxin and Lexapro is so expensive for monthly supplies that I would fall in the donut hole in a few months and being saddled with paying part of that cost out of pocket .

Using the patient assistence program from both drug manufactuers has allowed me to pay my doctors , Then still obtain my prescriptions at no cost to me . I would think this would please our guberment and the medical community enough to just leave me be , Nope they want me eyeball deep in the red tape of the system . I'm guessing the road to serfdom that Canada and the U.K took has came to our shores . Why do I feel like someone is sparking up the spit in congress for a pig pickin ?

A. Ziffle

Posted 4/4/2012 3:34 AM (GMT 0)
I've been fortunate to never have been asked for a co-pay at either Shands or Mayo. However, with these 2 different and new entities now involved (Home Health Care ordered by Mayo Wound Care and contracted through an agency, and Mayo On-Site Wound Care), it seems they all want their big mitts in the till.

mad

Hugs,
Connie
Posted 4/5/2012 1:48 AM (GMT 0)
Better day today.

Folks did their jobs, Mike's tests were rescheduled for Friday...so we'll be in Miami another day.  Medicaid worked through their mountain of paperwork.

Though today's glitch -- cardiologiest changed Mike's BP meds.  And Medicaid doesn't want to cover them. How can those folks call themselves docs?  Again, ACK.

His cardiologist will see him again in 6 months to look at his aortic stenosis. It is not a matter of if that valve needs replacing, rather when...   It would be good if that were a bit down the line so he could be stronger.

Liver stuff Thursday.

He is weary, all this running betweeen buildings.  And waiting.

ML

 

Post Edited (MamaLama) : 4/4/2012 8:00:32 PM (GMT-6)

Posted 4/5/2012 9:00 PM (GMT 0)
Trial by Thursday.

Arrived Transplant Clinic 9AM.

12 vials of blood. First year anniversary I guess.

Saw Hepatology re Hep C. They will do liver biopsy next month. Treatment an option, but maybe down the line. Miami is involved in post transplant trials with new drugs to develop protocols.

They said something interesting. Though the treatment failed the last time, Mike had a really bad liver with years and years of Hep C rummaging about doing evil things. And the treatment failed. the doc wonders at the high failure rate and thinks that maybe this nice new liver will work with the drugs to clear the virus where the last old liver was too worn out to help the blood clear the virus. Interesting viewpoint.

We have a new liver doc. His name has about 73 consonants. Everyone calls him by a nick name, one with only 3 letters! Funny. I was told by three Asian men this morning they can't pronouce his real name...well, we can barely understand the 3 Asian (and very nice) doctors either! Everyone has their own view of the world. \

Mike's labs good, though his white and red counts are still low and his Createnine is too high.

They reduced his prograf to 2.5 AM and PM but increased his Cellcept to 500 twice a day.

The cardiologist changed his BP, so we'll see how this new regime works.

Tomorrow is the cancer check. We assume that will be fine.

WE see cardiology and surgery in 6 months.

Not sure how soon for the cancer check.

We try to have the consultations back to back to cut down on the driving.

Hope everyone has a nice Easter, or whatever you do at your house to celebrate the end of winter and the beginning of spring....except for those in Australia who should be having a bit of fall I would think about now.

Carol

Post Edited By Moderator (hep93) : 4/5/2012 9:17:46 PM (GMT-6)

Posted 4/5/2012 11:19 PM (GMT 0)
I've been incredibly lucky, and have never had a problem with screwed up appointments. Both my PCP, local hospital and MGH have always helped accommodate my needs. Right before my transplant, I needed to get to the local hospital and my doctors nurse practitioner asked me if she could come pick me up. There's a lot to be said for living in a small town, where everyone knows each other. MGH, knowing how hard a trip it is to travel 30 miles to the mainland and then another 90 miles to get to Boston, let me do all my blood work here. They also gave me more time between visits to Boston than they normally do. Having said that, I go to MGH next Wednesday for a 4 month checkup. If things look good, they may let me have 6 months between checkups. Having read what some of you are going through, I'm feeling awfully lucky.
Posted 4/5/2012 11:36 PM (GMT 0)
**David**

Hoping next Wed goes well.

I know the ferry ride and long drive to Boston from your beautiful Island can be long and arduous...especially in certain traffic situations...going south out of  Boston late in the afternoon is TERRIBLE.  Wednesday is a good choice for a day...toward the weekend those 2 bridges onto the Cape re a nightmare.

We are now on a 6 month schedule for the transplant dudes, but at Miami the transplant people and the Hep C people are different!  So we have 2 schedules to deal with.  We come in a month for the biopsy (his first since transplant and second since 2003) and then back in 2 more weeks to discuss strategy.  They explained again that Miami protocol walks a fine line with Hep C treatment -- between treating everyone aggressively and letting it go until it is screaming at you.  They say each case is different.  They want to see Mike's general health, and look at the slides!  These scientists love their labs and slides!

The cardiologist is on a 6 month schedule.

And we think the oncologist is on a 4 month schedule...so sometimes we will be coordinated, and sometimes we will have to come more often.

Of course, if there is a slide....

At least we are having labs done locally at last...Quest has a lab about 5 miles from our house!

Have a nice weekend.

Carol, and Mike too.

Posted 4/6/2012 2:40 AM (GMT 0)
Wednesday's are the transplant teams main "day for livers" at MGH. I go to the Cape either by air, or the ferry, then take a bus to Boston, then the T. That's the same way I went up for the transplant. At MGH, once you get a transplant, the hepatologist is no longer treating you, the surgeon and the team do. They do consult with my hepatologist, but I don't see him. His PA took such good care of me (always in touch) and then shortly after my transplant she moved to New Hampshire. I was glad she stayed there the whole way through my treatment. When I was back in MGH for (5 days) last summer for what turned out to be Lyme disease she showed up one day. Turns out she didn't like the country life and was now on the transplant team. She is not the person I see now, but it's nice to be able to say hi every few months.
Posted 4/6/2012 4:11 AM (GMT 0)
D


Who is supervising your treatment

At Miami it is Hep...the same guys we had for pre transplant


It's like Mike is in both pre and post clinics

C
Posted 4/6/2012 1:40 PM (GMT 0)
The transplant team supervises me, but they and the hepatologists are involved is deciding treatments. There's also infectious disease and kidney docs in the mix. When I was on the transplant floor, they'd all (about 20 docs and nurses) spend the better part of an hour in a conference room going over each patients case.
Posted 4/6/2012 2:10 PM (GMT 0)
The confusing part about this center in Miami is that is it is so huge.

In a few block radius, there are many hospitals...big ones (Jackson, UMiami, and the VA) and specialty ones (Parkensons, Baskin Palmer Eye Institute, a Chidren's Hospital, Psych hospital, etc etc. UMiami also has a Rehab building, and Radiology building and a separate wing for outpatient procedures.

They are all part of the Miller School of Medicine, or most are, but many are separately run as business entities.

At one time the Transplant Program was at U Miami hospital.

And the huge regional trauma center was at Jackson.

They wound up transferring the organs "across the street" -- creating delays, requiring multiple "teams."

The whole Transplant Program moved into the trauma center location. However, the consulting physicians -- nephrology, cardiology, hepatology, oncology are in the UMiami location or in the Sylvester Cancer Center.

There are 6 different ramp garages we have found so far...and a ramp garage for our hotel. On days Mike feels really strong (or I am not whining about my own back problems) we can walk. But it winds up being a lot of walking.

Today we had an 8AM with oncology and a 2PM for the MRI in separate buildings, of course.

So we came back to the hotel in between...less tiring than hanging out in a cafeterial or lounge.

This week has been expensive! 4 hotel nights and 6 late lunches. We have b'fast at the hotel and only 1 additional meal -- late afternoon. Generally the restaurants still have their lunch menu where you can get a regular meal, but a smaller (more appropriate) portion...so we have "lupper." Our kids say this is really pushing the Early Bird Special Regime and that we are confirmed OLD PEOPLE.

Off to home late afternoon, fortunately late enough to catch the Miami Friday evening rush hour...more ACK. David, that's like hitting Rt 3 at 4:30 heading to the Cape.

Oh, Mike's numbers are good, though his Createnine has been running 1.6 and his GFR was 47 today...no contrast on the MRI for sure. The AFP and AlkPhos were both in normal ranges. White and red counts continue low. They did an iron study, we will get results next week.

His chest Xray was perfect, we don't expect the MRI to show any tumors.
Posted 4/7/2012 1:43 AM (GMT 0)
ML, I can definitely relate to the tests, consults, etc., being extremely tiring for those of us who have hep C. For me, it's also less than a month since the last abdominal surgery...and the swelling, blisters, etc. I had a meltdown on the phone with the TC about 2 hours ago. She is going to push most everything to April 26th and May. I do have to go in to see the hematologist on the 17th. Thank God! The TC finally "got it" that I simply can't keep going. But when she said she understood how I was feeling, I told her NO--she did not and could not, unless she had been through the same things. And for months on end.

Mayo consists of a number of buildings, but there are 3 for various patient testing, consults, cafeteria and snack bars. You never have to go outside as they are all connecting. Parking can be a problem, though I have handicapped cards for those who drive me and sometimes use valet parking. Inside, I let their volunteers push me from place to place as I really can't walk these days. When I was doing better, I considered the walking a good thing...though there were a couple of days where I was too tired to walk. How it's pain from the blisters and being wrapped from toes to knees.

Showers are something that can't be done while dressings and Ace wrap are on....about 2 wks. now. I use baby wipes, or wash cloth and diluted liquid soap. For hair, I use the rinse-free shampoo. Not great but better than nothing. I'm trying to find someone with a handheld device to wash hair in the sink.

The "good" pain med takes the edge off. By no means does it clear the pain completely.

I'm taking a mini-vacation this weekend--mostly keeping the phone off the hook and even keeping myself away from the forum for the most part.

Carol, I hope you and Mike can also have a little break once you get back home.

Hugs,
Connie
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