Mended Hearts Open Forum

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  • 1.  ALCAPA - issues later on

    Posted 02-14-2025 08:49

    Good evening,

    I am wondering if there is another parent or caregiver who would like to chat. My daughter's ALCAPA repair was 9 years ago when she was 11. Everything has been good till now. Her recent MRI showed her LAD being aneurysmal and now she is being put onto the 4 med combo for thinning the blood etc. We are just starting the warfarin process and it is quite daunting!! She is 20 and back living at home. We are waiting for a date to go get an updated CT scan to see if another surgery is going to be coming into play. This knocked us a bit since everything seemed to be going so well. She is heartbroken as she just wants to "live life like other people" but knows it was something that could eventually come down the pipeline. I have suggested to her to join many support groups for her age group, but just looking for other parents/caregivers who maybe have something similar in regards to the enlarged LAD and just to chat. 

    Thank you



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    reannon walker
    High River AB
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  • 2.  RE: ALCAPA - issues later on

    Posted 02-15-2025 07:41
    Reannon,

    I know nothing about your daughter's condition as I am an older man with coronary artery disease. I do know something about warfarin, however, having taken it briefly after my bypass surgery 7 years ago.

    I urge you to ask your daughter's cardiologist if you can replace the warfarin with one of the newer, second generation blood thinners, such as Eliquis or something similar, that is safer/less likely to cause bleeding, doesn't require constant monitoring of blood levels and doctor visits like warfarin and doesn't have the dietary restrictions of warfarin.

    It will greatly improve the chance for your daughter to feel she is living a normal life. I know it did that for me.

    Best of luck and a good, long, healthy life for your daughter.

    Ira