Mayo

My child is 22, almost 23 but he is still my baby. 

He graduated FSU last Spring, cum laude with a major in English and a minor in Biology.

He lives on is own, pays all his bills and is totally independent.

Except for when it come to issues with his heart.  On this, his dad and I insist on walking that path with him.  And he doesn't try to stop us.

Thank you, Nicholas for allowing us to tag along.  

If you haven't read Electric Heart or Electric Heart Part II , you might want to start there if you plan to continue reading this one.

We took him to Mayo Clinic yesterday, following up from an appointment in June.  There had been some question regarding the continued need for his ICD.  Since it's never had to deliver an appropriate shock to save his life in the 13 years he's had it, he might not even need it!   Also, one of the leads has been recalled and the other one is showing signs of fracture so it has been disabled already.

The surgery to remove the lead is not without risk.  A laser would be used to draw it out of the artery.  It's a delicate procedure and I don't like the odds.

This is the kicker though.  We found out his tricuspid valve, because of the lead, is leaking severely and will have to be replaced.  It is recommended that they use a bioprosthetic one instead of a mechanical one.  

My baby, at 22 years old needs a new heart valve.  I can't even...

Both cardiologists we saw, one dealing with the electrical part and the other with the structure, agreed that repair of the valve wasn't possible due to the severity of damage.  This is so very unfortunate given the replacement will have a shelf life of 10 - 15 years and it'll have to be replaced again. 

Will they look for a sell by date when they pluck it out of the cooler where they keep the body implants? 

Please give my boy the freshest one you have.  Like when you go to the grocery store to buy milk and you choose the one in the very back because you know the one up front isn't as fresh as the ones they hide behind the carton they need to sell before the date runs out.  Please, don't let this be like that.

This has nothing to do with the heart he was born with, structurally anyway.  This was caused by a machine he probably never even needed.  

But it was, without a doubt proven that he does have Long QT Syndrome.  Genetic testing pointed right to it, like a first grader tattle-telling on the boy across the room for wiping his snotty nose on his shirt sleeve.

Both doctors are going to call their colleague in Rochester, Minnesota to get his take on how to best treat his condition going forward.  They told us this doctor knows more than anyone at Mayo about Long QT.  

And so we wait...

UPDATE on 12/16:  Teleconference with Rochester doctor on the 23rd.