A Healthy Doctor Sam

Invitation

I received two pieces of mail from Sloan-Kettering yesterday.  Unfortunately, one of them is an $8,900 bill for just one day of office visits and procedures.  So far that amount has been denied by my insurance, although we're optimistically working on clearing things up with them.  And when I say "we", I actually mean my most wonderful wife, who seems to have an unlimited amount of patience for dealing with this sort of thing, when just looking at it makes me go crazy with anxiety!

The other piece of mail was much more pleasant, and almost makes you forget about the money:

Every year, Sloan-Kettering has a gathering of all of its bone marrow and stem cell transplant survivors, and starting this year I qualify for membership in this exclusive club.

Unfortunately, I won't be able to attend this time because I'm in Pittsburgh.  But Alissa and I will be back in New York for good this winter, and we're looking forward to being at next year's celebration and then every year thereafter!

Day +49: Dodged That Bullet!

Medically speaking this has been a pretty uneventful week. 

There have been two seemingly significant developments that turned out to be paper tigers.  The first was the cough, which eventually became "productive" and required a little bit of attention, in the form of a Z-Pack.  Luckily the azithromycin had the intended effect, and Dr Sam's cough has pretty much abated.

The other minor medical news had a bit of a ripple effect.  It all started when Sam tested slightly high on a routine CMV test, which meant that it was time to swap around his antivirals and put him on valganciclovir.  None of this is a particularly big deal and it's mostly just prophylactic to ensure he doesn't come down with a CMV infection.  (It did, however, mean that he got bumped out of a CMV prophylaxis trial for a drug called Maribavir that he might have been taking.  Of course, he also might have been taking a placebo.)

When Sam went to fill the prescription for the valganciclovir, he was presented a bill for approximately a billion dollars.  It turns out that a month's supply of this medicine costs about as much as I earn in a month and Sam had unknowingly maxed out his primary health insurance's prescription drug benefit... for the calendar year!  (Please note that it's only May, and we have seven months left.)  Oh, no worries, though.  Because he has secondary insurance from Pittsburgh.  But when he tried to use that to fill the prescription, he found out, in a most unpleasant way, that not only has his Pittsburgh insurance been terminated, but he has been terminated.  That's putting it a little too harshly--actually he just found out that his medical leave of absence expired in February and so he's out of a job and out of insurance.

This all happened late Friday afternoon, so you can imagine that we spent the weekend in a bit of a tizzy, brainstorming ideas of how to pay for Sam's billion dollars worth of drugs every month.  For a while there it was a nerve-wracking situation, but this week the benefits office in Pittsburgh very graciously and generously agreed to extend Sam COBRA coverage.  So now Sam has to make two COBRA insurance payments each month, but the total of those will still be less than the valganciclovir on its own, much less the entire array of prescriptions.

Whew.  Now we can go back to focusing on fattening up Sam, who is still losing weight even though he's finally back in the kitchen cooking a little bit.  Saturday night he grilled skirt steak for everyone in the backyard and Tuesday we made crustless quiches, per a Mark Bittman column.  Take a look:

He still can't taste anything, but you'd never know it from the way it all turns out.

Mission Accomplished.

Okay, the PET scan is done. It will probably take a couple of days for results to come back, which may mean early next week.

The degree of bureaucratic wrangling that it took to make it happen was simply mind-bogggling. I thought that for the last three days we were simply waiting for insurance pre-approval. But oh, if only it were that simple.

You see, I've come to the realization that this system is so big and complicated that no one entity knows what is going on or what needs to happen. And so we get confusion and gridlock.

How many parties do you think need to be involved? The doctor, the patient, and the insurance company? Not exactly.

In my case, the following cast were performing:

1) Me

2) Primary Care Doctor (Doing Business As "Montefiore Medical Group")

3) Oncologist (And his office staff, who are almost a separate entity)

4) Nuclear Medicine PET Facility

5) Aetna HMO

(you'd think the list should end here, right?)

6) Care Corp (A private "3rd" party firm contracted by Aetna and other insurance companies for the purpose of managing their pre-authorization approval process)

7) the Contract Management Organization (that's not a description; it's actually the name of a wholly-owned subsidiary of Montefiore Medical Center. To the extent that I can tell, these people are basically middlemen between the the doctors, the hospital, the HMO, etc, for a certain group of patients. Alternatively, they may just be some sort of bean counters)

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You'd think that with all these extra layers of "management" companies things would be running smoothly. After all, they exist to streamline the interactions between the parties, right? So amongst this wild and crazy group, depending on whom you asked and who was doing the asking, there was no consensus as to wether I needed pre-authorization or not, wether such pre-authorization was pending or not, wether in fact I was even in the HMO or not!

The situation finally resolved itself when on the third consecutive phone call to the same Aetna phone number (with contradictory responses each time), I got a sensible lady on the phone who was willing to walk through the process with me, call each of the other parties herself, and get everyone on the same page.

At least I'm a doctor and I know the ins and outs of the system a little bit. I feel sorry for any of you folks out there who have to go through this sort of ordeal as mere laypeople!

The one piece of fortunate news was that some other PET patient didn't show up for their test today, so they had an extra dose of radioactive sugar sitting around, and were able to do my scan this afternoon rather than making an appointment and waiting again.

Not Exactly Glowing...

Yes, I did expect to be glowing this morning. Mainly because I expected to be given an injection of radioactive fluorodeoxyglucose, as part of my PET scan.

But the PET scan did not happen.

Despite two and a half weeks of phone tag with my doctor's office in trying to get the test scheduled, and assurance almost a week ago that it was all set for today, I was told when I arrived this morning that it was indeed cancelled. It seems that no insurance pre-authorization was requested. And the doctor's office didn't even bother calling me yesterday to tell me this.

So now the friendly folks at the PET facility are trying to get the approval on their own, and they'll squeeze me in later this week once they do. Instead of a nice warm glow of radiation, all I was feeling this morning was a hearty dose of anger and frustration. I spent about 45 minutes composing a tactful email to my doctor that was maybe half as long as this little post. I wanted to convey my frustration and make sure he understood that his office kept dropping the ball, yet not come across sounding irrational and irate (though the latter I sort of am...)

Anyway, I'll keep you posted. Might be Thursday at this point.

:-(

The Pathologists Agree, Aetna Doesn't.

I got a phone call this morning from Dr. H of MSKCC. After taking several days to review all of my slides, their pathologist now concurs with the original diagnosis.

Peripheral T-Cell Lymphoma it is, it seems.

Some additional testing and analysis are apparently still in the works, but only to see if they can further characterize the type. But on the diagnosis of TCL, everyone now seems to be in agreement.

In the same way that I hesitated to consider his initial doubts as good news, I kind of hesitate to look at this as bad news, per se. I mean, this is what we thought I probably was dealing with all along anyway. At least now my faith in the field of pathology has been restored, which is very helpful going forward.

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I also got a call from my primary care doctor this afternoon. After days and days of his harassing the wonderful folks at my Aetna HMO, they have finally denied our request for an out-of-network pre-cert for the bone marrow biopsy. There is an opportunity for appeal, but apparently it takes a couple of weeks. My sense is that this is not the battle to fight right now. I need to get the biopsy done and move forward, and I think the oncologists at the two hospitals can hopefully figure things out so that I can have everything underway. That's the sense I got from Dr. H, speaking to him this morning before I had the insurance news.

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In other news, I feel physically great despite all of this. My abdominal symptoms have not been around for over a week, my appetite is fabulous, and the painful lesion in my mouth that started this whole mess has actually suddenly healed up. (Dr. H tells me that is not unexpected, since the biopsy incision probably initiated an inflammatory healing response in that area).

No News

No word yet from Sloan-Kettering regarding their pathologist.

And on the bone marrow biopsy front-- Since Sloan-Kettering is an "Out of Network" provider in my Aetna HMO plan, I can only have services there covered if my primary care doctor applies for, and obtains, a specific pre-certification. I had gotten such a pre-certification to be able to go to MSKCC for my consultation visit on Tuesday, but that only covered the office visit and nothing else.

To do the bone marrow test there requires additional approval, and Dr. D (my PCP) is working on it. Supposedly we might hear something on Friday.

The reason to do the biopsy at MSKCC would be so that they can perform any unique tests they have on the sample. Dr. H (the Sloan oncologist) said they would like to do some chromosomal rearrangement assays, which may not be available elsewhere. That little bit aside, he assures me that Montefiore can do just about any other test needed, and if I end up having to have the whole thing done at Monte it will probably be okay.