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Wednesday, April 15, 2009

Eric's Doctor Visit Yesterday

Today is supposed to be "Wonder Why" Wednesday. But yesterday's visit to the doctor has given us something else to wonder about. So technically I guess it still is "Wonder Why" Wednesday, but it's also "wonder what I should do," "wonder what's going to happen," "wonder if he should keep playing basketball," hmmmmm...wonder, wonder bum badumbum bum (mine and Eric's inside joke).

The scoop is that Eric has Marfan Syndrome. What is Marfan Syndrome? Basically it is a genetic connective tissue disorder that can affect, among many parts of the body but most seriously, the aortic root - the area where the aorta goes into the heart. For more info read this

Eric was diagnosed with Marfans at the age of 8. At that time the doctor was very cautious and conservative and told Eric that he couldn't pick up our 18-pound cat because the pressure on his aortic valve was too great. He was told he could play sports then but probably not in high school because of the increased competitiveness and training involved. He had to have an extra set of school books at home because carrying them back and forth in his backpack was too much weight.

Through the years he had echocardiograms (ultrasounds of the heart) every 6 months, which were decreased to once a year when they showed that the diameter of his aortic root was increasing but at a rate consistent with his increasing height and weight. The doctor said it has happened once in her career where she diagnosed a patient with Marfan's and then took away the diagnosis because the patient no longer met the criteria. She told us that Eric no longer met the criteria. Yes he still was taller than average, still had a pectus (concave chest), and still had hyperflexibility in his joints, but all of these things could be individual, inherited characteristics. My whole family is tall, I'm "double-jointed" (hyperflexible) and people who have inverted chests don't necessarily have Marfan's. But he no longer had the major criterium of heart involvement. She still wanted to keep an eye on him and do a yearly echocardiogram since he was so active in sports.

Which brings us to yesterday's yearly check up.

A year ago his aortic root was 2.95 cm. in diameter, which is at the upper level of what it should be. But it has always been at the upper level of what it should be. So the doctor was starting to think his was just bigger than the average person's.

His appointment was at 2:20, which I thought left us enough time for his 4:00 appointment with the personal trainer (for speed and agility training for basketball). Of course they were running behind, so after the echocardiogram I told the technician that we had about 5 minutes before we had to leave. He said he would let the doctor know. So I'm thinking, if we have to leave she can just call us with the results, which I'm sure will be no different than in the past.

Minutes later, she walks in with tears in her eyes and says, "It's not good." "It's grown. A lot."

She was sad for Eric because she knows how important sports are to him. He cried when he was younger and she told him he might not be able to play sports in high school. She has been following him since he was 8.

She tried to explain to Eric how serious this is, that it is potentially fatal. He could DIE on the court. That's how she said it to him. Because I think she thinks that both of us are in denial. And I think we kind of are.

His aortic root grew 1 cm. in a year. It is now 3.95 (Eric was so funny, he said "that was my grade point average last semester.") When it gets to 5 cm., patients have open heart surgery to have their aortic valve replaced. She told Eric it's like a balloon...the bigger it gets, the thinner it gets, and the more likely it is to explode. And that's exactly what can happen. It's called aortic dissection and it's fatal. Read this for an article about a Louisville basketball player who was diagnosed with Marfan's.

We're not sure why or how Eric got Marfan's. It's usually inherited, and since I was tested and do not have it, it's possible he inherited from his dad's side of the family. I do know that his paternal great-uncle, who was 6'11", died at age 39 of "heart failure" as did his paternal great-grandmother at age 65 and great-great-grandmother. But I don't know the details. Heart failure is such a general term. I don't know if they possibly could have had Marfan's and had aortic root dissection.

So where do we stand now? I told the doctor that we were on our way to an appointment with the trainer. She knows that Eric is on a travel basketball team. She knows that he plays for his high school team. She knows that he is signed up for the UCLA basketball camp at the end of June. She is trying to be a doctor and do what is right for her patient, but she is also the mother of a teenage boy. She knows how much this will change Eric's life. So she doesn't say anything about stopping the things he is doing now. But she tells us to come back in two months, before camp, for another echocardiogram. She was very firm about one thing. She said if his aortic root grows even 1 millimeter, that is it. No more sports.

So I wonder:

Do I continue paying $65 a visit for a training session that is possibly contributing to the enlargement of his aortic root, especially when we don't even know what his basketball future holds?

Do we tell the basketball coach of his travel team that he has this? The doctor said she'll leave that up to us. Eric says no because he doesn't want to give the coach any more reason not to play him. But what if he has to stop running "suicides" at practice because he's short of breath or his chest hurts? The doctor told him that if he does he absolutely must stop.

Should he quit the team right now? They play all the way through July. The doctor said let's wait until the June echocardiogram. But is that smart?

Hmm...I wonder.
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Kaminski Family said...

Save your boy... I'm worried about him. I think you need to tell the coach so he can watch out for E getting short of breath. The coach would be devestated if something happened and didn't know that He could have helped prevent it by making him rest. This seams like the toughest decision that you will ever make but make no mistake... It's his LIFE we're talking about here. He can always be a coach!!
Or take up GOLF!!

Unknown said...

That's what my dad said (about letting the coach know because he deserves to know). And if he won't let him play because of some kind of liability thing, then I guess that's the way it is. It's just really sad because he loves it so much. But I know his life is more important. Believe me :)

Besides, my dad would love, love, love IT! if Eric would play golf. He's good at it and would be even better if he played more often.

Jonathan said...

Hi Lynne,

Are you familiar with the National Marfan Foundation? Visit our website at We have an annual conference every year for families affected by Marfan syndrome and related disorders. Last year there were nearly 100 teens there! Eric might benefit from meeting other people his age who have experienced the same challenges and decisions about giving up sports.

You can call our hotline at 800/8-MARFAN. Our social worker is at x. 22.

Jonathan Martin
Director of Education
National Marfan Foundation

Unknown said...

Thanks for the info. That's really what he needs specifically, is to talk to someone else who knows exactly what he's going through, i.e. having to give up sports. Because I know a lot of Marfan's kids aren't always athletic, so this seems especially tough. I did print out for Eric the article about the Louisville player that had to quit basketball. He read it last night and it really seemed to help.

Thanks again for replying :) We were NMF members way back when Eric was first diagnosed, and it looks like it's probably time to join again.


Jonathan said...

The player you are talking about (Clarence Holloway) came to our conference in Boston last summer.

Keep us in mind. We'd be happy to help in any way we can.


Unknown said...

That is so cool :) I'll tell Eric that. He'll think that's neat.

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