January 24, 2011
by marfmom
10 Comments

Baby J’s First Echo

Thursday was a big day: I had my 6 week check-up with my OB and Baby J had his first echocardiogram to check on his aorta.

I felt like I was able to achieve some closure with my OB and I’m glad that I won’t have to be back in that office again. (To his credit, he understood why I was so upset about constantly being asked about having my tubes tied; he actually volunteered that it probably seemed like the residents were saying women with Marfan shouldn’t get pregnant and promised to talk with them about their approach.)

I’d scheduled the appointments with enough time in between for M, J, and me to grab lunch in the hospital cafeteria. Here you can see how I *almost* caught one of J’s elusive smiles on camera.

To be honest, I was disappointed at the clinic waiting room. It’s a children’s hospital, but there were no toys or books for the children in the cardiology clinic: just a TV. If I’d known they were running 40 minutes behind I would have taken my kids for a walk. As it was, M got ahold of the masks, motioned for me to put one on him, pulled it completely over his face, and entertained everyone running around in circles and bumping into chairs because he couldn’t see.

The echo tech who took us back was so helpful, carrying J for me so I could carry an overtired M and push the stroller. And thankfully, J was so exhausted himself that he didn’t fight the set-up for the test and actually slept through the whole thing! The conversation with the tech was a little odd though.

Tech: So…does someone in your family, like, have Marfan or something?
Me: (confused) Um, besides HIM? I have Marfan too.
Tech: You do? And wow! How did they diagnose it so early in him?
Me: Well, we did the blood test.
Tech: There’s a blood test?
Me: Yes. I had it done to find my mutation, then I had each of my sons tested.
Tech: Oooo, so it’s, like, one of those gene things.

Yah, one of those gene things…seeing as Marfan syndrome is a GENEtic disorder and all that.

For those of you who aren’t familiar with them, an echocardiogram is basically an ultrasound of the heart and aorta. It checks the function of all the valves and the size of the heart and aorta, particularly to see if aneurysms have developed. People with Marfan need to have them every 6-12 months. The whole thing takes about 40 minutes.

J’s new doctor didn’t want to schedule an appointment with us to go over the results, so I asked the tech to page him when we were finished. Of course he shows up to shake my hand just as I’ve got it in the diaper pail, fishing out the sippy cup lid that M. tossed in there (yes I wore gloves!). We’re classy like that! 🙂

It appears our personalities did not mesh. He seemed to be more of an abrupt, give-the-parent-the-minimal-amount-of-info type of doctor. I’m the patient (and now the parent) who wants to see aortic root measurements plotted on the z-chart and copies of all the reports.

The great news is though, that everything looked normal for now. Yay!!! We go back in 6 months, I’ll give the doctor another chance then, and hopefully it’ll be another great echo!

For now, we have two and a half glorious weeks without ANY doctors’ appointments! We haven’t had this since I got pregnant I think. Next up for Baby J is his eye exam, in about 3 weeks.

January 21, 2011
by marfmom
3 Comments

Off Your Desk: Your Insurance Questions Answered

I’ve recently become aware of a company that really jumped out at me, so I wanted to be sure to tell you all about it! How many of us have spent too much time arguing with our insurance companies trying to get a new therapy for our kids covered, approval to have surgery at an out-of-network hospital, or help in understanding the 20 different bills that just arrived for one hospital stay? I know we have, given that each member of our family has a chronic condition.

Off Your Desk is a company that takes the insurance headache off your hands. It takes only 10 minutes to sign up, and all you do is mail them all your insurance related paperwork in a pre-paid envelope. From there, Off Your Desk advocates for you, makes sure you are getting all the reimbursements you deserve (and not being over-charged!), and helps explain your insurance to you. They even work with Medicare/Medicaid.

They offer three basic plan options:
The Catch-up Plan is for those who have a lot of existing paperwork to go through (for example, after a major surgery). The average customer on this plan recovers $2500 within the first 90 days of working with Off Your Desk.

The Ongoing Support Plan is particularly useful if you’re someone who has a lot of doctors’ visits.

The Member Advocacy Plan is for those of you who just want to be able to have access to a professional to ask questions to so that you can handle your insurance paperwork on your own.

Custom plans are also available, including one tailored specifically to expectant mothers.

Off Your Desk is also looking to help the general community. They’re starting a Facebook group where fans can ask insurance questions. Each week Off Your Desk will feature one question to answer. Off the top of my head I can already think of a couple that I get asked a lot and I bet Off Your Desk would know: how to ask your insurance company to cover an out-of-network doctor (something we Marfs have to do a lot, particularly for surgery) and what the appeals process is if the insurance company says no.

Off Your Desk is offering Musings of a Marfan Mom readers the chance to be the first to get your questions answered! Just leave a comment (or comments) here with your questions by Jan. 27th. If you’d like to remain anonymous change your name but leave your valid email so that they can contact you if they need more information to answer your question. From your questions, they will choose at least one to spotlight.

Also, if you sign up for the Ongoing Support Plan by Jan. 27th, Off Your Desk will give you the first month for free! Just make sure to mention this blog when you register.

I can’t wait to see what kinds of questions get asked! I’m sure I will learn a lot in reading the answers.

Below, check out Off Your Desk’s 6 Quick Tips to Tackle your Health Insurance Paperwork Effectively in the New Year.

1. Clean up your 2010 claims
Don’t lose out on reimbursements due to untimely filing which is extremely common. For most health insurance policies, you have a maximum of 6 months after a procedure or doctor’s visit to submit a claim (can be up to 12 months for out-of-network claims) – and sometimes these “timely filing limits” can be much shorter. Make sure you understand the limits imposed by your policy – and submit those 2010 claims so you don’t lose out!
2. “Use or lose” your 2010 FSA by April
We don’t want you to lose out on hard earned FSA savings. If you have a Flexible Spending Account (“FSA”) or Health Savings Account (HSA), your account may have limits on how long you have to use these funds to reimburse 2010 expenses. In many cases documentation such as carrier Explanations of Benefits (“EOBs”) or pharmacy receipts are needed to utilize the funds. In the case of the FSA, if you don’t utilize the funds before April, you’ll lose them entirely.
3. Learn Your New Policy
It’s worth it to take the time to acquaint yourself with your policy for 2011 on your carrier’s website. Even if you haven’t changed policies, the details of your plan’s benefits and requirements can change year-to-year. Pay special attention to basic requirements like pre-certification (getting prior approval from the insurer) and referral (getting a referral from a qualified physician) requirements; insurers have been cracking down on these and frequently deny claims if the procedure is not appropriately pre-certified or the patient is not appropriately referred.
4. Confirm Your Pharmacy Benefits
Pharmacy co-pay schedules can change year to year, leading to major cost changes if you regularly take prescription medicine. Check with your carrier to understand your pharmacy benefits; now may be a good time to discuss generic alternatives to your existing prescriptions with your physician, or to consider using less expensive mail-order options to save on the cost of monthly drugs.
5. Consider Annual Check-Ups 
Many people are not aware that their insurance policies fully cover annual wellness check-ups. If it has been a while for you, check with your carrier to see if the visits are covered.
6. Verify Who Your In-Network Lab Provider Is 
It is sadly not unusual for consumers to find out too late who their in-network laboratory provider is. Best to confirm this before your family encounters 2011’s first lab tests.

* All opinions expressed in this post are my own. I was not compensated for this post beyond the opportunities for my readers to receive some questions answered.

January 20, 2011
by marfmom
8 Comments

How Social Media Has Changed Me

Today I’m writing as part of Mama Kat’s Writers’ Workshop, prompt #5: How has social media changed you?

Social media has made my life richer. It has allowed me to forge relationships with women from all across the world. I used to mock the idea of Twitter. Now it has become one of my lifelines as a stay-at-home mom. I miss the intense conversations I would have in college: the late nights discussing religion with my roommates, debating the healthcare reform platforms of various presidential candidates in grad school. Taking care of two kids and spending much of my time driving to doctor appointments doesn’t leave a lot of time for adult conversation. Over Twitter though, I can discuss educational philosophy or mental health policy or feminist issues in medicine. If I have free time and want to chat, chances are someone else does too. This has kept me sane.

There are some who differentiate between between “social media friendships” and “real life friendships.” I disagree with such a distinction. It was women I met online through blogging that helped convince me to have a VBAC and women I met through NMF Connect who checked in with me throughout my pregnancy. The impact of them on my life has been immeasurable. I certainly got more sleep before I became involved online.

This week the power of social media hit me particularly hard. One of my girlfriends died over the weekend. I’ve been devastated. We’ve been friends for almost three years, since I was pregnant with M. and she was pregnant with her son. We’ve talked about pregnancy, relationships, surgery, the limitations of our physical bodies, early intervention services, and death. We’ve texted late into the night and exchanged Christmas cards and pictures of our kids.

What we hadn’t done was ever meet in person.

In this time that I’ve become more involved in the blogging, Twittering, and Facebooking communities my views on relationships have changed. I’ve come to realize that seeing a person in the flesh is not a necessary component for a good, honest friendship, though of course it doesn’t hurt. My friendship with R was not any less real because we met online and lived across the country from each other. My pain with her passing is no less intense. I am so grateful for the opportunity that I had to know her, and she’s changed me for the better.

Rest in peace my friend.