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Posts (8)

Thu, Jan 31 8:32am · The Importance of Congenital Heart Disease Research in Congenital Heart Disease

Dr. Egbe,
Thank you for your most informative article regarding current CHD research. My daughter, @amylandis, was born with coarctation of the aorta and aortic stenosis. At 3 mos., Dr. Perryman at Jackson Memorial Hospital, performed a repair on her valve and also placed a balloon inside the coarcation. At 10 years of age, Dr. Redmond Burke and Miami Children’s Hospital, performed a Ross Procedure. She has since had 3 more open heart surgeries including the last procedure was to insert a mechanical valve and she has been on Coumadin ever since. She constantly battles the Coumadin numbers and frequently must get or give herself Levinox injections. Her pediatric cardiologist from birth was/is Dr. Stephen Iskowitz in Margate, Florida.
She also sees cardiologists in the Orlando/Melbourne Florida area.
My concern is that most cardiologists are not CHD Drs. We would love to know if the technology is coming wherein she would be able to possibly reverse the mechanical valve back into a homograft or other type of valve not requiring Coumadin. If even possible. Would love to have you speak with both Amy and myself about the ongoing and future research. Amy is now 30 years old.
Thank you,
Judy Trudel

Thu, Jan 24 11:04pm · Tetralogy of Fallot in Heart & Blood Health

Hi there! You were close! Amy turned 30 this past year. She is doing well. Always available to anyone that would like to talk or ask questions about our experiences. Will check messages again tomorrow.

Sep 29, 2016 · Aortic Valve Replacement in Heart & Blood Health

I would be happy to answer any questions. I will say that since my
daughter, Amy, has had the mechanical valve replacement, she has had
trouble in regulating the Coumadin! She cannot switch to the other blood
thinner due to the type of valve used, On-x. I really wish she could.
Although, I do think she could do better with her diet but at the same
time, due to extensive testing, it has been discovered that her body does
not absorb Coumadin as it is intended.

Aug 27, 2016 · Wolff-parkinson-white syndrome in Heart Rhythm Conditions

Yes, hi. This is Judy Trudel and my daughter, Amy is now 28 years old and
doing well. We have some issues because of the artificial aortic valve the
Drs. inserted over a year ago. She is now on Coumadin, and if we had it to
do over again, I don’t think we would have made the choice for her to
receive an artificial valve. A homograft, natural valve would have been
best.

Jan 17, 2016 · VSD repair surgery for 3 month old baby in Heart & Blood Health

Hi Colleen,
It is my understanding that she will have to take it the rest of her life.
She is evidently not a candidate for any other type of blood thinner. It’s
such a shame because she chose the “Onx” (sp?) valve because we were told
that it was showing promise in that after a few years, it would not be
necessary to continue any blood thinner! Since she has had that valve put
in, their clinical trials have stumbled a bit in that the results of
patient subjects going off of their blood thinners were not good.
We, of course, keep up with the latest news because we never know when this
might change with new improvements and/or studies.
Judy

Jan 17, 2016 · VSD repair surgery for 3 month old baby in Heart & Blood Health

Hi Colleen,
Thank you for mentioning us in your email. Both Amy and I know very well
what going through Congenital Heart Disease is like. I also copied my
daughter, Amy on this email in case anyone has any questions for her.
Please know that Amy is now 27 years old and she just had her 5th open
heart surgery last year. She had the surgery at Shands in Gainesville, FL
and Dr. Bleiweiss performed the surgery. Dr. Bleiweiss used a mechanical
aortic valve this time, rather than a repair since the repair she had the
year before did not take. The main issue she is having since the surgery
now, is Coumadin, the blood thinner. This drug is very hard to deal with.
Her levels are supposed to remain at a certain level and they most always
are not ever level! She has to watch everything she eats as anyone taking
Coumadin is not allowed to have certain foods containing Vitamin K. Vitamin
K is what clots the blood and obviously defeats the purpose of the blood
thinner. Everything seems to have Vitamin K in it! Even though a repair
would have meant another future surgery, I think Amy would have been much
better off not having to deal with taking Coumadin for the rest of her
life. It’s really tough!
I wish everyone the best of luck and please know that Amy and I both are
here in case anyone has any questions for us.
Thank you,
Judy

Feb 13, 2015 · Webinar: Congenital Heart Disease – What Patients Need to Know in Heart & Blood Health

My daughter was born with coarctation of the aorta and aortic stenosis. She is now 26 years old. At 3 months, correction of the coarc as well as an aortic valve repair was done by Dr. Perryman at Jackson Memorial Hosp. in Miami, FL. At age 10, a Ross Procedure was performed by Dr. Redmond Burke at Miami Children’s Hosp. One year ago, another valve repair was done by Dr. Bleiweiss at Shands, University of Florida at Gainesville. She is now experiencing moderate to severe leakage and is quite possibly looking at either another valve repair or possible replacement. My question is, is there anywhere in the country where it is possible to have either a valve repair or replacement done arthroscopically, without having to open the chest cavity? Is anyone doing this practice yet?