Thursday, February 13, 2014

The Diagnosis is Just the Beginning

We FINALLY got a diagnosis for CPA Boy's overall medical condition back on December 23rd.

Meanwhile the insurance company did indeed pay the $224,088.32 claim for the ICD implant surgery. They just wanted more information from the hospital. They paid $55,809.00 on the claim. I am guessing that this covered the costs of the device and the services of the hospital in a more realistic manner.

Why do they bill such an inflated amount though? Uninsured people would need to pay the whole $224K but insured people "only" pay $55K. Because we had reached our deductible and "out-of-pocket" costs already we didn't pay anything for this particular procedure (and we pay about $1,000 a month in premiums for our family of 3).

Our medical costs for 2013 ended up being approximately $23,000 (not counting vision and dental for which we don't have coverage --- and all three of us wear glasses and have teeth).

Now we are on a new year so everything resets. The deductible this year is "only" $3,000. After that we pay 80% of everything until we reach $9,000 total "out-of-pocket". So if we have another year of high-priced procedures we will spend a total of $12,000 to pay for them along side the premiums of $12,000 for the year. So our costs have "only" increased by about $1,000 over last year. Um, yay?

Of course if we have minimal medical needs in 2014 we will pay less than $24,000. Only time will tell.

But that brings me back to the diagnosis. CPA Boy has a DNA mutation which indicates a form of muscular dystrophy called Limb-Girdle Type 1B (abbreviated LGMD1B).

It turns out that there are at least 15 types of LGMD (and many more types of other dystrophies). Some are recessive where you need the defective gene from both parents to get the disease. Some are dominant and you only need one parent's mutated gene. Or you develop the mutation yourself during conception.

Here is the general description of LGMD:

What is limb-girdle muscular dystrophy?

  • Limb-girdle muscular dystrophy is a term for a group of diseases that cause weakness and wasting of the muscles in the arms and legs. The muscles most affected are those closest to the body, specifically the muscles of the shoulders, upper arms, and thighs.
  • The severity, age of onset, and features of limb-girdle muscle dystrophy vary among the many subtypes of this condition and may be inconsistent even within the same family. Signs and symptoms may first appear at any age and generally worsen with time, although in some cases they remain mild.
  • Weakening of the heart muscle (cardiomyopathy) occurs in some forms of limb-girdle muscular dystrophy. 

I think they must have named this form of MD when women were still wearing girdles. (Maybe today it would have Spanx in the name instead of Girdle!)

Anyway, now we know for sure. There is no cure for any type of MD so the doctors mainly manage symptoms as they crop up. In CPA Boy's case, the leg pain that led to the first doctor appointment which led to the discovery of heart issues and thence to the pacemaker and ICD surgeries. (The leg pain was caused by poor circulation stemming from the heart troubles.)

The next phase involves figuring out who else in the family has the same genetic mutation. CPA Boy's mom will get tested (she has heart issues though not the muscle weaknesses). If she has it then her other children may be at risk of developing LGMD1B too. If she doesn't have it then CPA Boy is Patient Zero in the family. (It's possible he could have inherited the mutation from his dad but his dad has no muscle weakness or heart troubles.)

We are also having The Boy tested as he now has a 50% chance of inheriting the mutation with LGMD1B. He would need to know so the doctor can keep an eye on his heart and also if it could affect any children he may have some day. We will know in a couple of months.

And that's where the deductible/out-of-pocket stuff comes into play: the DNA testing company billed just over $8,000 for the necessary tests in 2013. (Anthem denied this claim too and are waiting for more information before they process it. Sigh.)


The test for The Boy should cost the same right? Add in our monthly prescription costs and the visits to the doctor for checkups and we should be paying out that $12,000 in no time! Nothing like reaching the deductible and total out-of-pocket early in a year! Vacations and new appliances are overrated!

It seems like I am complaining about the insurance a lot but I know we are lucky to have it. CPA Boy's medical costs topped $400,000 in 2013 of which we paid $11,000 (plus $12,000 in premiums) and the insurance company paid just over $107,000. And he will need surgery every so often through the years to get the ICD replaced (depends on the life of the device's battery which is anywhere from 3 to 10 years) so we NEED coverage.

We have a diagnosis and we have insurance. Wheeee?

1 comment:

  1. Hey Kell, I read this last night. I think I'm gobsmacked that there's yet another disease I've never heard of (adult onset MD) that is affecting my friends. Pretty darned weird; hopefully not too scary & "deal-able" in the long run, once everyone gets used to the idea. Something to be managed but not solved, I guess. But still pretty darned lousy, even if knowing the cause of the strange symptoms may be helpful. Anyway, I'm thinking of you all during this major paradigm shift. Hugs. J.

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