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All I want for Christmas . . .

. . . is to know that baby A is OK . . . allow me to "vent" a bit . . .

It has been a little over a month now that we have been waiting to hear from insurance as to whether they will cover A's blood test and how much of it. After talking to the rep from the company that does the test two weeks ago, I felt pretty confident that the insurance would cover 90% of the test and our deductible would be covered, so when all was done, the test would cost us around $600.

We finally got word at the beginning of this week. Insurance will cover only 60% of the test and because it has taken so long our deductible went up from $0 to $500 (because it will not get billed until to 2009). So, when the bill comes in, it will be over $2,000.

When I heard this, I was upset. That is a lot of money for a blood test that, according to all other results, did not even seem necessary. Before I would agree to the test, I called our cardiologist to see why it is essential that A have this test done. After two days, I still had not heard anything back from the cardiologist.

Today, I was determined to get this done and get the answers I needed. For over two hours, I was on the phone with:

1. A nurse in our cardiologist's office (he, of course, is on vacation)
2. The rep from the company that does the test (spoke with her 3 times this AM)
3. Our insurance company (to see if they would consider this test "in network" and cover 90 % of the test (the lab that is doing the test is the ONLY ONE IN THE NATION THAT DOES THIS TEST, so we could not get anyone in network if we tried)

Anyways, after all of that, i am a bit frustrated and sad. frustrated because I heard different answers from 2 people at our insurance company and something different from the rep at the lab. I honestly do not know who to believe. The insurance company wants to pay as little as possible, I am sure. And the lab, wants us to get the test done. Each may bend the truth to get what they want.

I am sad because the nurse at the cardiologist's office made me nervous for the first time since A's 24 hr EKG that he could have long QT syndrome. After his EKG came back good, I was pretty confident that he would not have it, but now, the nurse made it seem that there is a good possibility that he may have it. I wish I could talk to the Dr. I wish I knew for certain that A was OK. I wish the blood test was already done.

After all the conversations were over, we were still in the place we were before I made the calls. Insurance will not cover anymore than already stated. I made one final call to the lab to proceed with the test.

Shorty after Christmas, I will get the results and, hopefully get "all I want for Christmas".


  1. Hi Katie,

    My daughter has LQT as well. We did the genetic testing and it came back negative for any of the known types. It's so frustrating not knowing what could trigger her. Luckily she's been fine but it's still hard.

    Email me if you would like to chat.

    sierra0278 at aol . com

  2. Hi Katie,

    I received a google alert about your blog because it was about Long QT Syndrome. My husband was diagnosed with Long QT while I was pregnant with our third child, and at birth her EKG proved to be abnormal. Our 3 year old son was subsequently diagnosed as well. We had the genetic testing done, and it was a frustrating, time consuming process to get insurance approval. I just wanted to suggest that if you or your husband have a human resources rep with your employer (whoever holds the insurance), they can sometimes be very helpful in getting things moving. Also, because this condition is USUALLY inherited from a parent, getting an EKG done on you and your husband might also provide some insight.

    This diagnosis is difficult to come to terms with, but the strength comes to deal with what you need to. Good luck with everything, and I hope that the tests ultimately prove the doctor's suspicions wrong!!!



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