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?

Friday, February 7, 2014

Ten Books, Volume 1, 2014

NON-FICTION

  • The Story of the Human Body: Evolution, Health and Disease by Daniel Lieberman
    • Starting with the early humans this book covers why we evolved certain traits and then explains why some of those adaptations that made sense in prehistoric times are not so helpful to us today. 
    • Anthropology is on my list of things I'd like to have studied if time and money were no object. (Along with English literature, geology, history, genetics, linguistics and several others. Time and money are ALWAYS object.)
  • Brilliant Blunders: From Darwin to Einstein: Colossal Mistakes by Great Scientists That Changed Our Understanding of Life and the Universe by Mario Livio
    • As it happens, I am just smart enough to understand Einstein's theories but only for short bursts of time. Thus this book: I could understand quite a bit of it but much of it was beyond my personal level of education in physics. But it was very interesting and not all of it was about physics, thank goodness!
    • The Darwin section (genetics!) was the most interesting to me along with the chapter about the discovery of the DNA molecule's structure.
    • The point is this: sometimes huge mistakes lead to huge discoveries. And then there were some scientists who just couldn't let go of their pet theories despite all evidence to the contrary.
  • David & Goliath: Underdogs, Misfits and the Art of Battling Giants by Malcolm Gladwell
    • This isn't a book so much about how a David takes on a Goliath so much as it is about how supposed disadvantages can actually be advantages in some cases.
    • There are stories about people with dyslexia, the civil rights struggle in Birmingham, London during the Blitz, Northern Ireland during the Troubles, a basketball coach for a girls team where the players weren't very good, and so on. 
    • I enjoy Malcolm Gladwell's books: they are quick reads with fun anecdotes. He comes under fire from critics as picking and choosing his data but he does not purport to be any type of scientist so his books are more entertaining than scholarly. And that's okay. The first two books on this list were scholarly and interesting but nearly as entertaining to read!
FICTION
  • NOS4A2 by Joe Hill
    • A creepy, long-lived man kidnaps children over the decades and has the power to transport them to his created world called Christmasland. He seems to feed off the children in some way to try to live forever. There the children become monsters themselves. A young girl named Victoria has a power of her own and she is the only child ever to escape him unscathed. Now she's grown up with a son of her own.
    • I liked this book, especially the first half, but it didn't quite sustain itself in the second half. Plus, when I read a book called NOS4A2, I expect the presence of a Nosferatu! There are no vampires in this book; NOS4A2 is just the creep's vanity license plate.
  • The Autobiography of Mrs. Tom Thumb by Melanie Benjamin
    • I really enjoyed this book as it covers the life of Lavinia Bump who ultimately married Charles Stratton aka General Tom Thumb. Both were little persons who worked for P.T. Barnum. The book is based on the historical record (although as fiction, much is created where there are gaps of knowledge).
  • Before I Fall by Lauren Oliver
    • Samantha is a high school mean girl who goes through her day with her mean girl friends and then dies. But then she wakes up and it's the same day. She gets a do over! But then she gets a whole week of do overs, kind of a mashup of "Groundhog Day" with "Mean Girls".
    • I wasn't thrilled with the conclusion but once I thought it over it was probably the right ending. 
    • I have read one other book by the author (Delirium) but I didn't like it enough to read the next two books in the series. One saving grace about this particular book (Before I Fall) is that it was a standalone volume, not part of a trilogy.
  • A Tree Grows in Brooklyn by Betty Smith
    • I have read this book at least a dozen times in my life. I was recharging my Kindle and when I wanted to kill a few minutes I chose to read a bit of it and then I was reading the whole thing.
    • I love this book! It is probably my favorite book of all time. I even own a first edition copy (minus it's dust cover unfortunately) from 1943. I'm not sure why it's on my Kindle; I probably got it for free at some point.
  • Hollow City by Ransom Riggs
    • This is book 2 in the Miss Peregrine series (Miss Peregrine's Home for Peculiar Children is book 1) and there will be at least another book at some point.
    • The author used some real, old photos and built a story around some children with odd powers. The 1st book's photos tended to be those of kids with some sort of trick photography involved (i.e. a girl who floats about a foot off the ground). The 2nd book's photos are a bit more mundane but add to the atmosphere of the story.
    • The kids, who have heretofore lived in a time loop undetected by other people, have had to flee to avoid the monsters after them (the Hollows). This book is the tale of their flight to London during the Blitz to rescue their teacher (and time loop creator) Miss Peregrine.
    • I hope the next book is the conclusion to the story. I don't need another open-ended series!
  • The Witch's Trinity by Erika Mailman
    • This takes place in Germany in the 1500s where an old woman named Gude is accused of witchcraft during a time of famine as a witch hunting friar shows up in town looking for people to blame and burn.
      • By the way, there's an umlaut over the "u" in Gude but I haven't been able to figure out how to get it into the blog. Does anyone know how her name should be pronounced? Good? Goodie? Rhymes with food? Gyood?
    • Gude is the narrator of the tale and you really feel for her plight (fictional though she is) because you know so many other people actually endured this type of thing in those more superstitious days.
  • When She Woke by Hillary Jordan
    • This book is sort of a dystopian version of The Scarlet Letter. The main character has had an abortion in an ultra-fundamentalist Christian future Texas. As punishment for her crime she is sentenced to be "chromed" for 16 years, her skin turned a fire engine red. (Depending on the type of crime people are made into different colors: yellow, blue, green, etc...)
    • Hannah refuses to name the father (a married preacher of a mega church) and undergoes degradation after degradation.
    • It's almost as if The Scarlet Letter was crossed with A Handmaid's Tale. Overall, a pretty good book but not great.