Mended Hearts Open Forum

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  • 1.  Young Heart Patients

    Posted 03-28-2017 11:27
    Our chapter has a group of young heart patients (under 50) who meet monthly to discuss the challenges of heart issues during the time when they are also dating, marrying, starting families, developing their careers and building lives for themselves. It is a wonderful group who encourage and support each other. Any other young heart patients out there who would like to connect?
    Marilynn Huffman
    Chapter 382, Bellingham, WA


  • 2.  RE: Young Heart Patients

    Posted 03-29-2017 09:21
    Marilyn I love that your group does this for young adults.  This is definitely an age group we need to start focusing on as an organization - teens and young adults have different needs and questions than other age groups and we want to be able to support them.  Thank you for sharing your model with us.

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    Mandy Sandkuhler
    Alpharetta GA
    (469) 888-3400
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  • 3.  RE: Young Heart Patients

    Posted 03-29-2017 09:32
    I had my aortic valve replaced in January, 2013, and my scar has healed fantastically. I have no sensitivity at all. I am 66 years old now.




  • 4.  RE: Young Heart Patients

    Posted 11-22-2020 20:37
    I had CABG x 5 last year at 48 and am interested in this group, but I live in Los Angeles. Is this an online group?

    Thanks,

    -Sal Savo-

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    Sal
    Los AngelesCA
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  • 5.  RE: Young Heart Patients

    Posted 08-29-2022 19:54
    Seems like this thread is pretty old, but 33 years old with Congenitally Corrected Transposition of the Great Arteries.  My great arteries and my ventricles are inverted, meaning my weaker right ventricle pumps the blood. I have had two open heart surgeries (PA band then VSD repair).  I was diagnosed with diastolic heart failure with preserved ejection fraction in on Valentine's Day.  I am not a transplant candidate, I'm not anything, just meds until... meds don't work.  I also am a full time caretaker for my husband who has multiple medical problems and dementia.  Just kinda reaching out to see if there's any other adult CHD patients here or younger patients in CHF.

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    Caitlyn Ellery
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  • 6.  RE: Young Heart Patients

    Posted 09-01-2022 23:10

    Hi Caitlyn, sorry to hear of your condition. There are plenty of adult CHD patients out there, definitely not alone. If you're looking for a group to connect with others in your age group check out the Young Mended Hearts info here:
    https://mendedhearts.org/about-young-mended-hearts/
    At the beginning of this thread you'll see that our Bellingham chapter 382 has had an active group for several years and we now have monthly zoom meetings, you'd be welcome to join a meeting or talk to one of us in the YMH group. 

    Peter



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    Peter Kilcline
    Bellingham WA
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  • 7.  RE: Young Heart Patients

    Posted 09-20-2022 03:51
    Sleeper pj are very popular, especially among teenagers, and they make a great gift for women. You can even use them to go to work. Wearing a pair of bunny slippers with casual work pajamas can help you feel professional, but you can still look cute and casual.

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    carlo pinini
    Engineer
    TDLS
    Miami FL
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  • 8.  RE: Young Heart Patients

    Posted 10-25-2022 18:37
    Thanks for sharing. Unfortunately the "find a support group" link on that page seems to link back to the original Mended Hearts groups, so there's still no separate group for that age range.

    Being a younger patient is certainly no fun, as you have to deal with doctors going "you're too young to have xyz" all the time and you have to endure a significant period of suffering before they'll really take you seriously. That's if you're lucky enough to to know what to ask about. I had to go to the emergency room twice after symptoms had advanced the catastrophic phases, as my regular doctors assumed I would be fine due to my age (24 at the earliest, now 28).

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    Joshua Blunt
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  • 9.  RE: Young Heart Patients

    Posted 10-26-2022 13:55
    I couldn't agree more!! I'm very happy to see that there is so much support out there for families and those whom have heart condition 💯💯😍 our youngest will be 1 on Thanksgiving and he was born with a CHD called Truncus Arteriosus. We did not know about his condition until he was born and flown to a proper hospital for evaluation and diagnosis. He's having his 2nd OHS November 1st right before his 1st birthday. It's great to see the support but I would absolutely appreciate more knowledge on the pediatric side of things 💯🙏 I definitely have a completely different appreciation for anyone whom has any kind of health condition that has such an impact on their daily life, like Congenital Heart Diseases. 

    Thanks again!!

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    Ashley Camacho
    Co-Owner/Operator
    Camacho's Flawless Home Detail, LLC
    Ocala FL
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  • 10.  RE: Young Heart Patients

    Posted 10-27-2022 20:27
    Marilynn, I'm interested. I'm 41 and will be having my first (and hopefully only) open heart surgery on 11/30. I don't know anyone but my stepdad who has gone through OHS. I don't know anyone with heart problems other than him. My problem is congenital and will be having it repaired. I live in The SF Bay Area. I'm assuming your group is online?

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    Yessica Sanchez
    CA
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