ICD lead induced VT

[LauraNP]

Hi Dr. Fett,
I don't know if you have been following my latest saga.. but I am being discharged from BWH hospital today VT free. They 100% proved that my recurrent VT was caused by my ICD leads and have removed them, replaced them with a new lead in a "quieter spot" and I can have my life back.

Apparently I am the 4th case they have seen at this hospital. You are so good at PPCM advocacy that I was wondering if you had any suggestions on how I could get the word out to people that this is a real problem and can be devastating. If I had not taken the initiative to get to Boston (and thank you for the recommendation of the BWH group) then I would still be at home, getting shocked and on amiodorone. My doctors had no idea this was my problem.

I have a blog where I have documented all of my struggles
http://twinsplus1.livejournal.com
Do you have any suggestions on how I can help others to be aware that this may be their problem too?

Thanks
Laura

[JAMESFETT]

Laura, that's an amazing story. I am so glad to receive the news that you are now doing much better, and that finally, a source of the problem has been found--and it is related to technology and placement of ICD lead.

One of the best ways to promote the information about this is to report it through a frequently-read medical journal--such as New England Journal of Medicine, Journal of the American Medical Association, Annals of Internal Medicine, Circulation, American Heart Journal. That way you will reach the target audience that needs to know about this. I would hope that one of your doctors would be interested in putting together, along with you as co-author, a manuscript and submit it to one of those journals. Your story, with or without the medical journal report, also merits exposure on national TV, such as the Today Show with NBC or CNN and Dr. Sanshay Gupté or whatever his name is.

Thanks for the good news!

JD

[LauraNP]

Any ideas how to get the attention of the national media?

[JAMESFETT]

Start with the local media, radio, newspaper and TV. If they become interested, they are sometimes affiliates with the national media, and you can reach them that way. Try and e-mail and/or letter to a prominent media reporter and their assistant might think it interesting enough. Obviously, I'm not an expert on this; otherwise I wouldn't be working on just a shoe-string budget to help dirt-poor Haitian mothers.

JD

[ibrenJ]

We all than Dr. Fett for referring us to BWH and live west of Boston Inworcester and I did not even know that there are people next to me who could make my life just as yours better. I am sooo glad for you! Each time I think about you and your husban with the kids, My heart just breaks, and I prayed that god should take all of you back home with a good news.
All my congratulations to your beautiful family for being there for you, Laura. Take good care of yourself now, they need you around.
Ines
Dx 7/06 EF 15%
Current EF 25%
mom to Brendan 4/05 &
Jamie 5/06