Thursday, December 19, 2013

Heart Update


Cole had his annual today.  We're starting to prepare, but there's still no for sure of when he'll get repaired or what they'll do.  He hasn't had an MRI since 2011, so Dr. R said he wants it in 2014.  After asking a little more about what happens after that, he decided it would be best to do it earlier, rather than later.  He's going to call tomorrow after talking to the cath specialist and then we need to have a list of Wednesdays we're available to drive to the hospital (2+ hours away).  It's obviously an all day thing.  No stress test this time though.  He said there's still a chance he could qualify for the Melody Valve.  It's only been out for about 4-5 years and they've been using it for 1+.  There's no lifetime on the valve yet since it's not been out long enough to know yet.  That's what he's discussing with the team tomorrow.  He's going to compare today's echo/ekg with last years, but he didn't think there was a great difference.  There's still a chance Cole can go another year without his pulmonary valve since he's not seeing any changes yet and not feeling any signs or symptoms of heart failure yet.  However, MRIs are the better gauge for failure of his right ventricle.  Obviously his right is still enlarged.  That will not go away until the valve is put in.  It's still that fine balance between waiting long enough so you don't have to put the heart through unnecessary surgeries and not waiting so long that the muscle's not repairable, which is when you could run the risk of critical failure needing a transplant.  It's rare, thankfully.

He said they team may not be able to tell from the tests today if he qualifies for the Melody and may need the MRI to decide for sure.  Then, we'll kind of go from there.  If he gets the Melody, he'll only need a cath for repair and need a weekend for recovery and can even resume wrestling a couple of months later.  He just needs scar tissue to build up and strengthen the repair.  Then, they're expecting, like other valves it will buy him a few to several years before he needs another valve.  That's the going rate on valves.  For whatever reason, not having a valve at all, he's survived longer than most patients with only a patch for a valve.  It's typically just a few years and we're going on 17.  Just over 16 to be fair, but Doc says it's amazing.

He said once he has the MRI if they decide he needs the valve it will not be a wait and see or lets schedule it next year like they originally thought.  It will be fairly quick at this point.  That's probably better for Cole so he doesn't get any more anxious than he will anyways.  If that even makes sense.  If he needs open-heart this time around and we do it before May, he knows he can recover in time to wrestle his Senior year.  He may not land on Varsity, but I am so proud of him no matter what.  He's very strong.

Other than that it's the same old same old.  He will never get away from open-hearts.  He has a lifetime of caths where they will insert a valve with stents or open-hearts to repair and replace valves.  The only thing I know is that it will be a bovine valve.  He said for right side they do bovine, you don't do mechanical and he only has to be on aspirin afterwards, so that's great!

One day at a time and hopefully we can get him in in February, so we can see what's going to happen.  So much for hoping I wouldn't meet my high deductible next year.  Those MRIs are EXPENSIVE!  I would just like to NOT meet it one year, but my money's well spent keeping him healthy.


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