Posted by Jack Drum on July 08, 2001 at 10:47:07:
I got the following mail yesterday from Anne. The original post about Courtney was "A Letter From Anne", on 6-3,. Anne gave me permission to post this letter also.
No, Courtney did not have the revision. She went to Mayo with us 3 weeks ago
for another opinion. She just got discharged Tues. They discovered during
the cardiac cath that her ejection fraction (function of the pump of the
heart) is only 34% so they felt she is not a candidate for the Fontan
revision and maze procedure ( arrhythmia surgery). The surgeon Dr. Danielson
and the cardiologist Dr. Warnes felt that she should go on the transplant
list. She will be on the transplant list at Mayo. We can register in
another region as well. It has all been pretty much of a shock but we are
trying to cope with the idea. Our own card in Chicago may be sending us for
a 3rd opinion to Boston after she gets the cath and angio film from Mayo.
Our card was very shocked to how things have turned out. Her function was 60%
in late March so she defiantly detioriated pretty quickly. They are all
trying to figure out why. We were told by the EP at Mayo that it is one of
three reasons or a combo of all. One being the chronic arrhythmias, which
have always been controlled I might add...two the antiarrhythmic drugs can be
toxic to the heart... and three the disease process and the fact that she has
had mitral valve replacement as well which can contribute to left sided heart
failure. So they have put her on an ace inhibitor to try and help the
function. She remains on a beat blocker, 2 antiarrhythmics and two
diuretics. They are hoping to eventually wean one of the antiarrhythmics to
see if it will help the function as well. If as we pull the antiarrhythmic
away she begins to get fib again we may have to face the open heart for the
maze alone. They say the revision will not help the function because there
is no occlusion in the Fontan. So they are trying to improve her pump with
meds in case she needs the maze. If she got well enough to do the Maze they
would also do the right atrial reduction as they feel that could possibly
improve function. So at this point she is going on the list but I am praying
that someday she may be able to have heart surgery and hopefully buy her a
couple of more years before transplantation.. but we will see. Right now we
are just trying to get back on track and regroup, it will be a long road....Take care,
Anne