My Breastfeeding Badges of Honor

What's 1 more?

12:27:00 PM Edit This 2 Comments »
Gavin has been a complete and total champ today. I wish I knew more about hearts. How they work. What a heart echo is *supposed* to look like. What a 12 lead EKG is *supposed* to look like. I wish I knew more about Marfan Syndrome. Does he really need another "Syndrome" on top of everything else?!?! How is that even fair?!?! I did some reading about Marfan Syndrome the other night. I stopped after reading that until recently the average life expectancy for a patient with Marfan's Syndrome was 32 years old. I wanted to run away when we told the nurse about the *Deme's genetic aortic dissections and the first thing she said was, "Ah, undiagnosed Marfan's Syndrome." *And she wrote it in his chart!!!* I don't want it in his chart! I don't want him to have another syndrome! So far today he's had an EKG and an Echocardiogram. I couldn't tell anything about about either test while they happened so everything looked bad and very horrible to me. So I stopped watching.
Elizabeth Gorski

2 Comments:

marfmom said...

Hi, I found your blog via Google Alerts and I don't know what you were reading, but that is just WRONG. I have Marfan, I do a lot of work with people with Marfan, and we have an AVERAGE life expectancy with treatment. I know the diagnostic process is scary, but Marfan isn't a death sentence by a long shot.

What's normal on an echo is a little different for every person, because what is a normal size for the aorta depends on the person's age and size. Doctors use something called a z-chart to plot that, and you and your husband? friend? other family member? should ask to see his size plotted out. That will help you know what is normal and how far he is from a healthy size.

Also, a diagnosis of Marfan not give be given just because he's had an aortic dissection. There are other disorders that can cause dissections, like Loeys-Dietz syndrome, vascular Ehlers-Danlos, and Familial Aortic Aneurysms. There are Marfan clinics if you're in the US (and in other countries, though not all) that the NMF has set up a criteria for, and they should be better equipped than a regular hospital to make the right diagnosis. The NMF is the National Marfan Foundation. You can call them at 1-800-8-MARFAN or email Amy Kaplan, the nurse (she's so sweet!) at akaplan@marfan.org. She can answer your questions, send you information, and tell you if there is a clinic in your area. We also have a social networking site called NMF Connect (http://nmfconnect.marfan.org) to share information as patients.

Know that you are not alone in this.

Unrelatedly, reading your bio it looks like we have a lot in common, including the fibro, so I'll have to bookmark your blog and come back to read more often! Good luck, and let me know if you have any questions!

Nicole said...

I'm here if you need me. Even if it's just to call and cry/vent whatever ;). (I'd rather listen to you then Jr any day ;) ) Love you & all your boys!

Ah...true love...

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