Posted by Jack Drum on June 03, 2001 at 18:48:55:
I just wanted to post a portion of a couple letters I received from Anne, about her daughter Courtney, who is 19, and was born with heart defects. Many of us are very fortunate compared to some people. We should all keep them in our thoughts, and prayers for her up comming surgery in July. During her young years she has been through much, and still fighting. She just graduated from High School, and looking forward to colledge.
PART OF ONE LETTER.
Thanks Jack I would appreciate you putting us on the prayer list. The site I
post on is achd@tchin.org and ptchd@tchin.org one is for teens and their
parents the other is for adults. This is a support group for those born with
or family members with congenital heart defects. You can read about the group
at Children's Health Information Network on the Internet or go to
http://tchin.org/join.htm I love it and the support from everyone.PART OF ANOTHER LETTER
Hi everyone,
I just wanted to let everyone know we have finally gotten a surgery date for
Courtney. She will be having the Fontan revision and both a left and right
sided Maze done at Children's Memorial in Chicago on July 10th with Cath on
June 8th. I spoke to the card over there this morning and we discussed the
renal failure problem in detail.
They are currently the only ones doing a dual sided Maze in our Country in congenital repairs. It is a
much riskier ablation for Fib and involves over an hour of surgery time making total surgery time 12 to 15 hours. The results at Children's has been
5 of the 5 who were ablated for fib all went into renal failure. One resulted
in both kidney and heart transplant. The other 4 were reversible after being
on dialysis. I asked the card about it today and she said the average
failure was 2 to 3 weeks. She said at this point we should count on renal
failure and just hope it will be mild. I asked her if there was any way we
could just ablate the right side and she said no Courtney would continue to
have Atrial Fib because Fib originates on the left side.
The cardiologist from Children's told me today that because of Courtney's
complexities and the renal failure she will require an extensive hospital
stay. When I asked her how long she said that 6 weeks would not be
unreasonable. I was fairly shocked by this. I knew it wouldn't be easy but
I didn't expect it to be that long. Courtney was hoping to start college in
the Fall but has now had to put that on hold. She is coming to terms with it
but not happy about it. She is going thru an emotional time. I just try and
remind her that after it is all over with her quality of life and her
arrhythmias will be so much better.
I didn't mean for this to get so lengthy. I wanted to keep everyone up on
what is going on and ask all of you to keep Courtney and all of her doctors
in your prayers. Not many of our friends understand the complexities and emotions of CHD.