Mended Hearts Open Forum

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  • 1.  ALCAPA

    Posted 02-14-2025 08:49

    Good evening,

    I am a parent of a now young adult CHD child. My oldest daughter had ALCAPA repair 9 years ago. Everything was going great, but now after transferring to adult care, they have found her LAD is dilated and aneurysmal. She is starting warfarin and it's so daunting to see. We know here CHD is lifelong, but this seemed to hit us out of the blue. We are waiting to get a CT (hopefully in next few weeks) to determine if there is any issues with the original repair, any microbleeds in the smaller arteries or if everything is ok and the medicine regime she is going on will be suffice. We could be seeing another surgery, just biding time to get the CT and find out for sure.

    Just looking for support with caregivers or even people who have gone through this similar type of thing, not necessarily ALCAPA, but with the aneurysmal coronary artery etc


    Thank you everyone



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    reannon walker
    High River AB
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  • 2.  RE: ALCAPA

    Posted 02-15-2025 08:06
    Dear Reannon,

    I'm sorry your daughter is experiencing difficulties.  I was born with a congenital heart defect - Tetralogy of Fallot.  I had palliative surgery at one year old and repair at 6 years old.  I am now 58 years old and doing well so there's hope!   Is your daughter's adult cardiologist part of a team from an adult congenital heart defect clinic?   When I turned 18 I was told to not go to a regular adult cardiologist because they don't understand the repaired heart with congenital defects as well as pediatric cardiologists.  So, I would advise your daughter to seek out an ACHD Clinic even if it's a little drive.  Sometimes they are housed inside the Children's Hospital.  But that's ok!  I still go to the same hospital where I had my surgery.  Regarding the CT scan, I was told at the ACHD clinic that cardiac MRI is the gold standard for diagnosing issues with our repaired hearts.   Sometimes when we become adults there are complications or the need for further intervention.  I know it can be a surprise because we hoped that was all past us.  As a mom, I understand your worry.  However, the ACHD docs know best how to treat us.  I have a leaky pulmonary valve they are monitoring that might need to be replaced. About 10 years ago, I developed a heart arrhythmia but it's being closely monitored and controlled with medication.  It brings me peace knowing that I'm being closely monitored.  When I had my children, I was followed closely and delivered two healthy babies!  There is hope!  I'm sorry your daughter might need more intervention.  I will pray that it is minimal and that she will be in the hands of experienced doctors.  Please reach out to me anytime and keep me posted.   I'm honored to support you. This group is all about supporting each other!  





  • 3.  RE: ALCAPA

    Posted 02-15-2025 14:54

    Thank you so much for everyone who has responded!! She is followed by a group of doctors specialized for congenital heart defects. I have faith in the cardiologost and I know if surgery is on the table again, it will be up at the same place she had her pediatric surgery at. Her condition is a rare one, so many specialists were involved with her first surgery. I am confident and a pretty headstrong mom who will question and ask too πŸ˜‰   
    I will check about the warfarin! I know there are newer ones but I think right now they want to start something while figuring things out. She had the cardiac MrI which showed the LAD and why all start on the meds. The CT with the dye they want to see for microbleeds and I believe just more info for them to figure things out. It's sucks for a 20 year old to have to live with. She is so good about it all, but the mental health portion is difficult. Im hoping for more info in the next month of what she's actually looking at. We thankfully have fun things like her college convocation this Month to look forward too. It's put the Job search a bit on the side, but hoping she can be successful to find a remote job.

    thank you again and I welcome anyone's advice support cause it sucks! 



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    reannon walker
    High River AB
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    Original Message


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