Today was our treatment planning with the RO. H had petscan on 12/31/08. Local hospital gave us a cd to handcarry to the tumor clinic on 1/7. Tumor clinic opened the cd and someone's MRI of their brain was there. We were told that the tumor clinic had made a call and it would be straightened out. Meeting today and no petscan. Call to tumor clinic - no petscan. Call to local hospital, in less than a charming tone of voice, and they assure me the disk will be fedex'd to doc by 10 am tomorrow. In the meantime, doc can't tell us if some of the stuff on it is cancer or not as all he has is the written report (likely written by a monkey) and therefore we don't know if we're shooting for cure or control of this thing! Mask done today. Chemo starts Wednesday with Erbutix 1 x weekly and rad starts on Monday (18 treatments 1 x daily and last 12 will be 2 x daily).
Just needed a place to rant.....and a reminder to all who are starting this process to stay on top of everyone involved. Keep notes, keep copies of stuff, keep a calendar and phone numbers handy.

Cheryl

Rant away - you have every right to be really PO'd. Are you sure that this is the right place for treatment??


I hope that things get better from here and you are right - you have to watch everybody and everything any more. I miss the time when people were responsible and cared about the job that they did. Most of them now are just there to draw a check.

Good luck and I hope tomorrow is a better day.

Patty

I always ask for two copies of my cd's....one for the dr., and one for me to keep...maybe for OTHER doctors....Of course, in this case, you would have had TWO copies of that other person's brain scan.....arghhhhhh. But it's your property, and you have a right to it. If there is a fee, it should be only a few dollars.

That's unconscionable carelessness. You deserved to rant. Now I feel like ranting on your behalf!! XO

I've also received CDs of my scans, and being a curious person I would insert them in my PC and take a look. Not sure what all I was looking at, but I was able to verify that they were indeed mine.

Since my adventure began I have seen many different doctors, so I got in the habit of asking for copies of all my medical records and various tests and bringing them along with me to my doctor appointments.

Cheryl, you do have a right to rant. That was a very dumb and careless mistake. I hope the rest of his treatment goes smoothly.

Cherly,
it was probably typed in an entire room full of monkees. I stopped getting copies of the CD's because even though I work in the radiological products industry, particularly in diagnostic radiology workstations, unless it jumps out and smacks me in the face - I don't know what I am looking at either. The original tumor was pretty obvious - it was big and blocking my throat. It would actually cut off my breathing while sleeping at night. Subsequent scan anomalies were much more subtle and required reading by a radiologist. I also had one time when they gave me someone elses study so much for HIPPA!

The way that it works, in practice, is that the scans are sent to a central office/reading suite, where copies are made by technicians, the readings and reports may be done there as well. All of the scanners from the hospital, Gamma camera, Ultrasound, CT, MRI, PET, LINAC x-rays, etc. all end up in the same place. It is easy to make a mistake, especially with the volume some of these institutions have. I've had MRI's late at night, on weekends, etc.

Since I have an HMO, all of my treatment, meds, etc., were all on their coordinated database (which ironically I submitted the 510K to the FDA for clearance to market for). It is a very wise idea to get copies of all of your medical records, scan reports and lab tests. I wouldn't bother with getting actual scans. This information is vital if you are going to submit an SSDI claim to Social Security.

Totally agree with you about the notes and everything. My wife did all of that. The docs really move through the stuff quickly.

Sorry you are going thru such a frustrating time of it. Being organized is very important. Sounds like you are doing a good job.

I carried a small day planner with me and a small notebook to every office visit. I took a business card from every person I talked to or met with and stapled it to the inside covers. Many times I found myself goign back to get the names and numbers for people I met during the beginning of my adventure.

Thanks folks for listening to me rant....it's a new day and while I'm still irritated beyond words, I'm better - which just means my head has stopped spinning. It's the local hospital that's responsible for this screw up so if docs at CCC (2 hr away) don't receive that disk today I'll be at the local hospital before the end of business today. The pressure of not knowing what we're facing is just a bit much - all of it is overwhelming of course, but we're almost 3 weeks out from a petscan and don't know if we're looking at metastasis or some other problems.

Does your CCC have a patient advocate? Mine does and in situations like you're describing it's been invaluable. It's somebody you can talk to about frustrating things going on like that. We found that when we talked to that person things got straightened out in a hurry.

Good news - doc's office phoned me at 10:30 this a.m. and they have the disk I haven't looked into a patient advocate thing as I did legal advocacy for the poor for 20 years. Handled most of the SSA claims through the hearing stage so I know the drill, it just irritates me....some things never change.

Thats positive news, glad they found your disc.

The whole process can be overwhelming. So many doctors, appointments, medicines, treatments. Seems to be so much to do that it can wear you out just going from appointment to appointment.

Oh, well given what you did for years, yeah you absolutely know the drill!! It CAN be extremely frustrating. An additional frustration we've had with my CCC is that each and every doctor, department, lab, area, etc bill separately. We tried to consolidate onto one account number for the CCC but noooooooo can do. Separate accounts for each, with separate account numbers. Holy cow that creates confusion, because then of course you've got separate insurance statements for each, etc.

Sorry, getting off course there. Now I'm ranting I suppose....
-Steve

Well, I received some bills in the mail today...

My txs were just under $106 000
My stay in the Hospital 65 000

I can't remember what the neck dissection and the tumor removal was.... about 15K??...I can't remember...I don't think it was under 10K...

That Hospital stay was expensive...thank goodness for health insurance

btw...i wasn't ranting or anything...it was just the first time i received anything about costs...

Ray

The more of the costs I see the more I want to rant. Thank goodness for insurance this time. The first time around I had none to start with and then had to fight mine every step of the way. I keep everything in a 3 ring binder and then file the bills behind the insurance statement so I can make sure that everything is getting taken care of. I still get new bills and currently have 3 things going through the appeal process. One of them being the bill for the pathologist's service while I was hospitalized. It must be normal for it to be denied since the pathologist's office sent me a letter and some pre-printed material to send with my appeal. I am afraid to total them all up, it would probably send me to the emergency room.

Patty

i received a notice that the UW was billing my insurance $16,000 for some treatment I did not receive. I called the insurance and could not believe how passive they were about it ... like 16k didnt matter much ... No wonder we pay so much for insurance if 16k doesn't matter. and get this "I" had to call the UW to get it taken off ... they could not do it ??? say what ??>

It is amazing how the hospital bills for one amount and then the insurance pays a completely different discounted amount - why not skip the first step and just bill for what will be paid. It is really a shame that sick people can not focus on getting well because they have to spend so much energy keeping the insurance company in line and watch all of the different billing services so carefully. My first surgery was scheduled for the Tuesday after Labor Day 06. My insurance company called me the Friday before at like 3 pm and requested that I change doctors or they would not pay for my surgery. I told them to take a flying leap. I was not changing doctors and had just spent the day with an attorney making sure that my affairs were in order. I was so stressed by the time I went to surgery. There now I am off my soap box, maybe.

Patty

Insurance companies and the SSA....sigh...truly paperwork hell. Fortunately our insurance co has a website. I can access all claims and convert to excel spreadsheet in order to keep track. Then I have a folder for each thing (rt, chemo, misc, consults). Old habits die hard I guess. I set this stuff up just as if I were prepping a case. Years ago when my daughter was still at home (seizure disorder) I compiled all this stuff and when she left home I had everything for her SSI claim at my fingertips. I also had a lot of just junk but better too much than not enough. I've also found that when I open my totebag and start pulling stuff out before offices can find it in their file that I don't have to take a lot of BS from them. A very wise neurologist once sent my daughter home from the hospital when she was still quite ill and told me that I knew my daughter better than any of the staff did and I would be able to pinpoint problems faster than the staff. Every caregiver should keep that in mind. I've had several go 'rounds with hospital staff over that very thing - one told me my aging mother was just "confused" because she was at the hospital when she was actually going into sepsis! Ok, now off my soapbox too...my motto, as always, question authority

[quote=Good1]It is amazing how the hospital bills for one amount and then the insurance pays a completely different discounted amount - why not skip the first step and just bill for what will be paid.[/quote]

The billing amounts are effectively the undiscounted cash price for the procedure, followed by the much lower discounted price negotiated by Medicare and other ins providers. Just let the dust settle, esp if you have Medicare plus a supplementary insurance, because it takes time to process individual cases through two ins cos.

I don't know if it is because they don't do the same thing in England, but we never got a CD? One time the consutant got an urgent call for sommeone on the ward (Martin is an out patient), and he left the file in the room. So I peeked and looked at all of the scans. But no one ever gave us a CD.
Otherwise, I have the consultants' and nurses' numbers in my mobile phone. I also have reminders in my mobile phone for appointments and scans, in case my trusted filfax gets lost. i also have a special martin folder with all of the copies of appointments and leaflets and stuff. it pays to be organised.
Best of luck as well.

[quote=Pete D]The billing amounts are effectively the undiscounted cash price for the procedure, followed by the much lower discounted price negotiated by Medicare and other ins providers. Just let the dust settle, esp if you have Medicare plus a supplementary insurance, because it takes time to process individual cases through two ins cos. [/quote]

Medicare and different insurance companies negotiate their own maximum allowable charges which can vary tremendously. Here is a great example of what Craig and I were each charged for a simple two-film chest X-ray.

We have FEPBlue Insurance since Craig is retired from civil service. Last year Craig signed up for Medicare and that is now his primary carrier and FEPBlue is now medigap (i.e. picks up all the charges Medicare does not cover). I still have FEPBlue as my primary carrier, and they pay 100% once a year for a chest X-Ray as a part of their preventive care program. Therefore, the chest X-rays we had at the same institution on the same day cost each of us $0.00.

Here are the numbers reflected on our BC/BS statements:

Submitted charges by the hospital: $705

Craig's statement:
Plan allowance-Medicare: $705
Medicare PAID: $696.55
FEPBlue paid: $8.45
Total insurance payment: $705

My statement:
Plan allowance-FEPBlue: $68.78
FEPBlue paid: $68.78
Total insurance payment: $68.78

I realize that the negotiations between medical providers and insurance companies are give and take (i.e. we will pay more for this test if you will take less for that test, etc.).

BUT.... Is a two-film chest X-ray (not including the charge for reading the X-ray) worth $705?

And look who is putting out $696.55?

We are, fellow taxpayers!

[quote=Pete D]

The billing amounts are effectively the undiscounted cash price for the procedure, followed by the much lower discounted price negotiated by Medicare and other ins providers. Just let the dust settle, esp if you have Medicare plus a supplementary insurance, because it takes time to process individual cases through two ins cos.[/quote]

I like the let the dust settle advice Pete. That means I can just keep putting it in the binder and only look at it once or twice a month instead of fretting about it more often than that. You are a wise man.

Patty

I'm doing a lot of ranting lately......got the pet scan straightened out and now the disability insurance carrier has decided to close the claim because they didn't get whatever they wanted from the docs. Seems the docs are playing pass the buck with the paperwork. Spent 45 minutes on the phone with the insurance people yesterday, then went back to work and faxed them 12 pages of stuff I already had. We'll see where that gets us. Haven't even seen a bill for the medical yet although the dental extractions were a fun bit - our insurance pays $2500 on dental per year and the bill was $5300. I pointed out that since extractions were due to medical reasons NOT dental that maybe they should submit to both dental and medical carriers. I've yet to see anything from either one. There's another call to make and probably another 45 minutes. Bill the insurance!!!! Why do they think we paid for it!!! (And just as a side note, I'm attempting to deal with my mother's Part D Medicare coverage for prescriptions - she's covered by insurance through retirement benefits that won't pay except when she's in the "donut hole" and now they (the retirement carrier) seems intent on mailing that back and forth to us from various places around the country----grrrrr......)

Comment to me from an independent insurance agent who once worked for a major national insurer: "The insurance companies are the closest thing to the mafia we have in the USA."

In addition to all the above comments about health insurance and having fought post Katrina battles with both home owners and FEMA based flood insurance from the same company and knowing what many of my friends have gone through and the battles still being fought, my impression is that all insurance operates under the same rules as the Red Queen in Alice's Wonderland.

Malka,
another guest at the Mad Hatter's tea party

Had a better time at the tea party today.....Mike had chemo and RT so I had a lot of time at the hospital. Went to the nurses in both departments and told them what was going on and bless their hearts they hit the print button and gave me everything including the "Monitor Unit Calc Sheet" showing the RT mapping of the tumor! The nurse said they'd never understand it but if they want paper, we'll give them paper. I hope I jam the fax machine at the insurance carrier's end with this stuff. I will fax tomorrow from work since I work for an attorney and he's ok'd whatever I need to make this move. Also noticed today that this case manager is located in Lexington, KY....a driveable distance for me....I may offer to bring the tea party to him in person I wonder if any of the people making the decisions on these claims ever meet the claimants in person? or their totally irritated spouses?!?

[quote=CherylR] I wonder if any of the people making the decisions on these claims ever meet the claimants in person? or their totally irritated spouses?!?[/quote]

Haha, in the uk we are lucky enough that the national health system is taking care of Martin. Although you do sometimes feel like you are only a number or a statistic.
The state however would not give him any support, as i work more that 16 hours a week. I can afford to look after the household. Luckily i have a reasonable salary and I can work from home if need be, but it seems unfair. While working middle income people work hard and try to keep things going, struggle, scrimp and save and make do, some lazy so and sos (not all, just some), don't work and get everything taken care of, allowances, house. It makes me annoyed!
On the other hand, i do think that we are very lucky that our health care is free. i have private insurance through work, but martin doesn't, and he is still getting excellent treatment.
C