Sunday, November 29, 2009

Double Inlet Right Ventricle

Illustration of a normally-formed human heart.

Drawing of Luna's heart (the two tunnel-looking things at the top that are hard to read say LPA (Left Pulmonary Artery) and RPA (Right Pulmonary Artery)-they are the arteries that feed blood to the lungs and then to the rest of the body.

Yesterday on twitter some fellow CHD parents were looking for a drawing of a double inlet single ventricle. I happened to have one, since that is what Luna's diagnosis is. I then dug-out this description that Luna's cardiologist wrote. I wanted to publish it here so the world could learn better about Luna's anatomy.

Reading Dr. G's description leaves me speechless. I forget-or perhaps keep deep at the back of my mind-how rare and unusual Luna's heart is. What's more amazing about all this, is the kid is perfectly HEALTHY!

"Luna has one single ventricle, and in these complicated cases, it can be hard to tell whether it is a single right or a single left one. Luna is felt to have a single right ventricle. She also has a double inlet- both "AV valves" or inlets into her ventricle enter into the one single chamber, giving her "Double Inlet Right Ventricle", even more rare than Double Inlet Left Ventricle (DILV). She also has dextrocardia- heart in the right side of her chest instead of left- and she also has transposed great arteries, meaning the aorta is in front of her pulmonary instead of behind. However, many single ventricle kids have pulmonary stenosis, but she goes beyond "pulmonary stenosis" (pulm valve has a very narrowed opening) to what she has, "pulmonary atresia" (valve not open at all, or never formed). Luna will undergo the same surgeries as many other single ventricle kids to re-route blood flow."

Thursday, November 5, 2009

My conversation with Joe Lieberman's office.

The other night, while watching the election coverage, (Rachel Maddow), a particular statement nearly knocked me off my couch. The anchors were going back and forth on whether Sen. Joe Lieberman would vote for the public option. Rumors were swirling that he was, but then, a statement was issued from Lieberman's PR guy, stating, "If you believe this story (Lieberman joining Reid on a vote for public option) is true, you will also believe that I am replacing A Rod in game six of the series."

I have a sense of humor, but this type of crass statement wasn't funny to me. From where I sit, Anthem is withholding Luna's first synergis shot (a necessary shot for her to ward off the threat of RSV, which since she will be undergoing the Fontan operation in 2010, would be most inconvenient and dangerous if she acquired the respiratory disease).

I'm also worried about what the New Year will bring in terms of our health insurance we obtain through the Architect's place of work. For '09 we had a 5K deductible, which we maxed out in the first 6 weeks of the year, and pay a monthly premium of $700. It's a total of $13,400. Another 5K annual increase will put our out of pocket expense for health care near 20K. Needless to say, I'm worried. And among other things, the bill that is being debated would prevent families like mine from being discriminated at renewal time. Insurance companies, under the proposed bill, could not raise our rates based upon our past history.

I decided I would organize my thoughts and place a phone call straight to Senator Lieberman's office.

This is how the phone conversation went:

(202) 224-4041 is the direct number to his office and after several rings Lieberman's voice comes on. He cheerily prompts you to press 1 to leave a message or 2 to speak with a staffer. I pressed 2.

A woman staffer answered and I introduced myself and my reason for calling. I then asked if she had a moment so I could share my thoughts on the health care bill. She said yes.

I continued my pitch saying we have a medically-needy kid with a series of heart defects, and while she, due to modern medicine, does wonderfully; the insurance issues we deal with on a regular basis are draining and exhausting.


I pressed on saying I'm heart-broken over what seems to be Senator Lieberman's game of chicken on the issue, while many of us, our lives and livelihoods, are hinged on his vote.


I pressed on: His PR guy is releasing jokes about it, and here we sit, hanging on to this hope that something will be passed that protects kids like our daughter.

Still silence. "Are you still there?", I ask. "yes", the crisp voice answers.

I press on: In 2010 our daughter Luna will endure the Fontan prodecude, which is an operation that will correct her circulatory system, which because of her malformed heart, is very complicated. The operation, hospital stay, and all else will most likely cost close to 200K-if not more, and I'm terrified of what Anthem will and will not pay for.

Still silence.

I pressed on: I have applied for Federal help, but the irony is because Luna is deemed healthy-due to the vigilant care she receives-she is at the bottom of the list.

Finally, I ask, what is Joe Lieberman's stance on the public option?

The crisp voice on the other end finally shows some signs of life with a long exhale.
"Well, I can tell you he is not voting for it".

With the blood rising into my face, I press on: "if he's not for the public option, then what is he for?

"I don't know".

Silence on my end.

"I can't say".

I'll admit at this point I was upset...furious at it all, can't say, I don't know? I work in media and represent various clients, and I can tell you, if you represent someone you know exactly what they stand for.

I'm shocked at myself, but I went on to say: It's obvious it is that Lieberman is a Trojan horse for the Republican Party and why does he vote with the Democrats anyway?

At that point she briskly ushered me to a close, and said, "I'll pass along your information".