[tri-wings] Re: What a choice! (long) - Sharon

<<BUT....Jamie does need an operation.  We were left 
with a choice of either Angioplasty (which I told you 
all about before we left) or to have a mechanical valve 
fitted in place of the damaged valve.  What a choice!  
Apparently, both are as good as one another, therefore 
as the consultant said, if one was better than the other, 
we wouldn't have been given a choice!>> 


Hi Sharon,

Angioplasty, in my opinion, is the better beginning 
choice.  It's less invasive all around, and if it does 
the job, that's great.  If it doesn't, then you still 
have the mechanical valve option to fall back on.

My Philina (Partial Trisomy 6p) was born with both 
aortic & pulmonary stenosis.  They had originally
wanted to do an artificial (mechanical) valve 
replacement on her aortic side when she was 11 mos
old.  She went into congestive heart failure then.

But we opted at the time to just fix her patent
ductus arteriosis that hadn't closed on it's own.
That was a closed heart surgery as opposed to
open heart for the valve replacement.  Both were
serious surgeries, but open heart is far more so.
That gained us 11 more years.  

I don't know how old Jamie is, but remember this,
artificial valves don't grow.  If he's not done 
growing, they will have to periodically go back in 
to replace it with a larger one.  That's more open 
heart surgery then I wanted to deal with, if at all 
possible.  

At 12 the puberty growth spurt was something her valve 
couldn't keep up with, and we were again looking at
open heart, but gained 6 more yrs with an angioplasty.
Again a closed heart procedure as opposed to open
heart.  Angioplasty is done in the cardiac cath lab
and only requires at most 1-2 nights stay in the 
hospital, if not even done as a day surgery.  Valve 
replacement requires a far longer hospital stay.  

In fact when we finally HAD to do the valve replacement 
at almost age 19, due to numerous complications she was 
in the hospital over 90 days.  (Complications: clogged
chest drain, 3 collapsed lungs, a very bad reaction to 
Nipride, sinusitis, a bad reaction to Lasix, a bad 
reaction to Phenobarbital....ad nauseum)

I'm not sure why you're looking at an artificial valve.  
By the time we were nearing the point of knowing we 
were running out of time (1-2 yrs left at most), they 
were talking about using a pig valve on Princess Phil.  
Then when her Echo said it was time, they were doing 
trials on cow valves, and planned on using one of them.  
But in the end, she wasn't a candidate for the Ross 
Procedure.  (Ross Procedure would have put the cow valve 
in her pulmonary side, and moved her pulmonary valve
over into the aortic position.)  They made the decision, 
after they opened her up and saw how "ugly" her pulmonary
valve was, to use a human valve instead.  It wasn't what 
I'd wanted, but sometimes these things are taken out of 
our hands.  At least it wasn't done back in '83 when AIDS 
was just becoming rampant, and untested for in the parts 
banks.  But pig, cow & human valves all grow......

Fawna, mom to Philina 20 yrs (PT6p & Moya Moya Syndrome)




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