mannj24
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mannj24, December 5,  2018  10:47pm EST

My 13 Year Old had Open Heart Surgery

My 13  year old had open heart surgery earlier this year to repair her tricuspid valve. She is struggling with very bad anxiety since the suregy.  She worries when she gets tired- is her heart not working. But after many tests her heart is thankfully much better.

Any advice or support group with other teenagers that have been through heart surgery that I could have join? I think it will help if she can speak to peers that have been through similiar situation. Thanks

8 Replies
  • yarn007
    yarn007, December 6,  2018  12:37am EST

    Just sending best wishes to your daughter and your family.   

  • tsmckinney
    tsmckinney, December 6,  2018  10:08am EST

    Sending good thoughts and prayers to you all.  My daugther had open heart surgery at two weeks of age, but she still has some anxiety around her repair - as do I.  Not sure it will ever completely go away.  Hopefully, over time and reassurance from her doctors she will get some relief from the anxiety.  

  • Lyoakam
    Lyoakam, December 6,  2018  11:46am EST

    Hello😊 congrats to your daughter on her successful surgery! Your daughter, along with these other heart warriors are our heroes! It is hard to help with specific resources not knowing your location but there are several places you could definitely start. Given it is your teenager needing some support it may not always be "cool" to go to a actual support group! Thankfully there are so many online groups now where parents and warriors themselves come together for support and answer questions. Try having her join some of the Facebook groups that are more specific to her diagnosis and/or broader ones like "Children with Congenital Heart Defects". Sometimes it is easier to be open and ask questions when your in the comfort of your home😊. If not, then you can seek out your local Mended little Hearts, pediatric congenital heart assoc chapters and call or email them to inquire about their support groups. Her cardiologist office may also know of some local ones. Perhaps she would also be interested in mentoring other teens with CHD if she doesn't already? Sometimes helping others will also help you in more ways than one! Good luck mama!

  • renshiwo
    renshiwo, December 6,  2018  6:08pm EST

    I asked some friends with older heart kids and got a couple of suggestions. There is a small Facebook group for teens with CHDs. I don't know how active it is, but it may help her connect to other teens facing similar issues:

    https://www.facebook.com/groups/2225866250821045/?fref=gc&dti=31852537970&hc_location=ufi

    I agree that seeing if there are local chapters of national CHD groups could help you connect with other families. There are also camps specifically for heart kids scattered around the country. Camp del Corazon in California was particularly recommended to me, but there may be camps closer to where you live.

    I don't know if there is a way for us to connect personally either, but I had a couple of moms say that their teenagers might be interested. So, if we can figure out a way to exchange contact info privately, I might be able to connect you with them directly.

    If you can find a counselor that specializes in treatment of trauma-informed anxiety, that might be a good next step. I found this article to be a good introduction into why different types of counseling are needed for anxiety that is related to trauma. https://themighty.com/2018/06/anxiety-from-complex-trauma/?fbclid=IwAR17DgAELfoEoeKx04oV3QodlPAY_au3rC55nGX7Lp70YH4WwcOeUX9lPto

  • JamesPL
    JamesPL, December 6,  2018  8:28pm EST

    The anxiety and concern about her heart when she feels tired is normal. Adults experience this and I would imagine that it would be heightened for a teenager. I don't think that will ever completely go away but it will lesson over time. Open heart surgery is a pretty traumatic experience at any age so it's not unusual to think there is something wrong everytime there is a pain or tightness or are more tired than usual. 

    I wish you and your daughter all the best in her continued recovery.

    Jim

  • jlhyde85
    jlhyde85, December 10,  2018  11:07am EST

    I'm really sorry to hear that your daughter is experiencing anxiety, but I understand where she's coming from. I've had two open-hearts, the first at age 2 and the second at 25. I'll likely need another down the line to manage my tetralogy of fallot. Getting help from a mental health specialist can go a long way in finding healthy ways to respond to our physical symptoms as can connecting to other folks who share our specific life experiences. Mended Hearts may be another network to look into, and it may also be helpful to schedule a visit with your daughter's cardiologist to discuss current test results, what feelings may be typical and what symptoms she should respond to more immediately. There is also a fantastic YA novel called A Hole in My Heart by Rie Charles. Charles is a social worker, and she writes fantastically about the emotional side of open heart surgery, and brilliantly so for a teenage (and adult!) audience. https://www.goodreads.com/book/show/18527827-a-hole-in-my-heart

    Jen

     

  • Lyoakam
    Lyoakam, December 23,  2018  1:58pm EST
    Screenshot_20181223-135359.png.

    Just came across this new group on Facebook and thought of your daughter 🙂 hope all is going well.

     

     

  • DolphinWrite
    DolphinWrite, January 9,  2019  3:48pm EST

    I had a relatively healthy life up until my heart attack at 54, which came during cycling.  I have always exercised, weight was just a little high, but there have been no heart attacks in my family, so  I was in denial for awhile.  I'm very sorry this has happened.  The words of advice I can give is to allow what you feel, but talk to people, and try to look for positives and the good things you have.  I've done a lot of research, talked to others with similar situations, go to cardiac rehab, and connect with others online.  I bug my doctors all the time.  I think it''s best to remain positive, hopeful, and help others by sharing as here.  I believe younger people who've gone through something like this have better improvements;  something to do with youth.  Meds, the right exercise, and hobbies/ friends are important.  Some may not understand, but that''s cause they"ve never gone through this.  Hope the best.  God bless.  He''s watching over you.

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