Tuesday, January 22, 2013


You know when I started blogging in March 2011 I never knew I'd be right here where I am today. Back then no one knew why Kevin had heart failure. It was all very unexplained. Confusing. Be that as is may, we plugged along. Enjoyed the simple things in life, did our daily dressing changes, clinic appointments, fought with Mr. Insurance on a daily basis, and eventually the call came for a new heart.

That call for a new heart was one that clearly changed our lives forever. It's one that I often talk about has not only saved my husband but has saved my little family of four.

That call for a new heart helped doctors discover a very rare tumor that indeed caused Kevin's heart failure. A tumor that has actually been inside him for quite some time. It for sure explained a lot of incidents in his past, that looking back on them, were not isolated. They were all related to one another with a tumor being at the center of it all.

Why am I talking about this? Well, this rare tumor... it's genetic. It's so genetic and so rare that it makes sense (while being horrible Kevin had to endure all of this) why a perfectly healthy 36 year old man who goes to the gym, and doesn't smoke or do drugs, had heart failure.

Having said the "it's genetic" part.... what does it all mean? Well the genetic doctors tell us that it possibly means one of Kevin's parents is the carrier of said gene that can produce this rare tumor.  Now, just because you have the gene doesn't necessarily mean your body will produce the tumor... both of his parents are very healthy. So, once his parents are tested and the results are in, then the proper side of the family can be given more information. Meaning only that side of the family is at risk for carrying said gene.  Is it possible for both of them to be a carrier? Maybe. I don't know I'm not their genetic counselor. I'm giving you information that was given to us in our genetic counseling from doctors who are the best at what they do.

Everyone following me thus far?

Unfortunately this means that since we have two boys, they are at a 50% risk of said gene being passed on to them. They're both being tested - finally - after Mr. Insurance decided NOT to pay for the genetic test. Ah, I forgot how much of an ass Mr. Insurance really can be to its members. Regardless, once we find out we'll know what to look out for should any symptoms arise. And with Cedars Sinai in our corner and with an absolutely wonderful pediatrician for our boys...I know we'll come out on top.

And sure the knowledge of which side of the family it comes from may not seem important to outsiders. I mean out of sight out of mind, right? Why get tested, right? Well I'll tell you why - because there are too many on both sides of the family and too many with little kids. They have a right to know. They have the right to decide how to proceed with the knowledge of said gene.

Ya know, knowledge is power. It's power that was given to our family the day we got that call for a new heart. Organ donation saved my husband and my little family of four. It's also potentially saved immediate family members and their children too.

Whoever you are, wherever you are, thank you for saying yes to organ donation.

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