Im kinda frustrated.

[Hrtofwmston]

I guess I just need to vent but im a bit frustrated. I just got back from a meeting at school about Model United Nations. Basically schools get assigned countries and then you research your countries politics and then go to a big conference in a big city somewhere in the U.S. My school is going to Kalamazoo, MSU, Chicago, and New York. I was talking with my mom and she said "I hate to be the wet blanket but..." and basically it came down to I might not be able to go to New York or Chicago because of my HCM. Now I just joined this but New York and Chicago sound like the most fun and I might not be able to go! I see what she means from a parents perspective but its really irking me. My whole life I've been told (As im sure we all have at some point or another) "You cant let this hold you back, etc etc etc...." So I try and run with the bit of freedom the ICD gives me and I hang myself on it when I try to leave the lansing area. GRRRRRRRRRRRRRR!:mad:

[Cynaburst]

I am not sure what your mom is worried about? Traveling with an ICD is not a problem, even in airports...just be careful when going through security. As long as you are stable and your school knows what to do in case of an emergency, there shouldn't be a problem with travelling.

Perhaps a call to the office could help your mom and you sort this out?

[Sarah]

Hi!

Please have a talk with your mom about what her worries are and see what you and your doctor can do to address them.

FYI: I was in Model UN in college and debate in HS and traveled all over the country. I was diagnosed at 13--I was on a lot of medication but never had any trouble when I was traveling. As long as your coach and chaperons know what to do in case your ICD fires, there shouldn't be any medical concerns--especially in Chicago and NY where there is excellent medical care.

If you get to come to Chicago, I can show you around. The HCMA and Northwestern Memorial Hospital just had an HCM patient meeting last week --it's an HCM Center of Excellence and the head of the cardiology dept is my doc. So you can't really go wrong here!

Model UN is a fantastic experience and I totally recommend it, even if you can't go to all the events. Feel free to PM me or email me at sarah beckley at gmail if you want to chat about any of this.

Keep us posted and keep talking to your mom and have her talk to your docs. And Lisa, too (HCMA president).

S

[EmilysMom]

I can understand why you are frustrated. I'm a mom of a kid with an ICD, so I can understand your parents' perspective, too. Your parents are probably nervous. I know I feel uneasy when my daughter is away. We let our daughter go to Chicago to visit family this summer (we live in upstate NY). She even traveled alone.

So you have gotten some suggestions here, that are good ones. Try to understand what concerns your parents, and see if you can help address it. One thing my husband has said is that your heart and your ICD don't know if they are in Chicago. Your risk of having a problem is no greater than any other day. Promise to take your meds and keep hydrated. You can provide your chaperones with a copy of your medial emergency information, and you should be as safe as you would be at school. I did the same thing for Emily. I provided her Aunts all her medical info, what to do if there was an emergency, and a contact at Northwestern.

You'll do better in negotiating with your folks if you really try to understand their concerns, even if you disagree.

[mflanagn]

I hope your mom changes her mind. My son traveled to CHINA in 3/08 and did terrific! He is only 14. I know it is scarry to think your kid is traveling without parents, but if you have all the medical information and your chaperones are well instructed, there should not be any reason why you can't go. Its a great opportunity and hopefully your mom will let you experience it! Good luck!

[Hrtofwmston]

Thanks everyone but I dont think shes hesitant because of my health i think its because she doesnt want to have to put anyone else in the position of watching over me....

[Sarah]

Guess what? The Model UN coach and chaperones' jobs? They are to watch over _everyone_ they take. You are not the only kid there with a chronic condition or parent's who worry. The staff in charge of you know this and that's part of what they sign up for.

They would be watching over you just as much as they will be every other kid there. I told you I was _in_ Model UN, but I was also a debate coach. I was responsible for a bus full of high school kids two weekends a month during debate season.

If your ICD fired, you would go to the ER and your parents would be notified. If something happened to any other kid in the group, the exact same procedures would be followed. Where is the burden?

Ask your mom to talk to the staff and see what they say--if they think it is too much for them.

[Cynaburst]

In addition to the HCM Center of excellence in Chicago at Northwestern, there is also one in NYC at St. Luke's hospital.