Mended Hearts Open Forum

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  • 1.  Looking for adult CHD friends with CHF -- New Member

    Posted 08-29-2022 08:46
    I am 33, almost 34. I was diagnosed with stage 3 CHF on Valentine's Day.  I also have a complex congenital condition called C.ongenitally C.orrected T.ransposition of the G.reat A.rteries (C.C.T.G..A).  What that means is that my left and right ventricular are inverted but that my arteries are also inverted so it (sorta) fixed itself.  These days they have a surgery to fix this in infants, only like three surgeons do it. Adults are not eligible.  I had two open heart surgeries as a kid though, a PA banding, a VSD repair, different things. 

    Growing up my heart was pretty normal. Always seen my special congenital cardiologist but meh everything was good.

    Didn't even go into the hospital for heart related stuff, I hit my head and had a big bump so went to get checked for a concussion and they found it.  I've been a complex chronically ill medical patient for years at a big University hospital.  They missed my heart failure for a long time.  Years.  Years and years.

    I've spent five weeks in the hospital this year.  I'm not an LVAD candidate.  I'm not a transplant candidate.  They said that it was because I was overweight, so my goal was to get under 200, but after losing 70 lbs, apparently there are *other* reasons (my multiple chronic illnesses and medication) so that just sorta makes me feel like my life isn't worth anything to UNOS or the medical world.

    Just struggling a bit but no one to talk to.  None of my friends understand.  Just thought I'd poke in and see if anyone could relate.  

    thanks xx

    Caitlyn Ellery
    Los Angeles, CA

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    Caitlyn Ellery
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  • 2.  RE: Looking for adult CHD friends with CHF -- New Member

    Posted 08-30-2022 01:06

    Very sorry to hear of your struggles.  Please keep on looking for a doctor and medical institution that can help.  Being told that "I" or "we can't help you" does not mean that some other doctor or medical institution does not have what you need.  Stick with it.



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    Ed M
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  • 3.  RE: Looking for adult CHD friends with CHF -- New Member

    Posted 08-31-2022 05:05
    I'm stuck with a major university center due to my rare congenital condition and I have a lot of other rare genetic conditions and various diagnoses... even being at one of the top hospitals, they miss things but too complicated to go anywhere else.

    Thankful to have a good PCP now! Doing well on low sodium, losing weight, changed my diet, swimming, walking, doing all the things.

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    Caitlyn Ellery
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  • 4.  RE: Looking for adult CHD friends with CHF -- New Member

    Posted 08-30-2022 16:34
    Hello, I also have CHD ( transposition of the great arteries, pulmonary stenosis and single ventricle) and CHF. I firmly believe everyone is here for a reason. I have felt at times alone and misunderstood. Therapy has helped and support groups ( I'm in some on Facebook). Also if you don't feel like your doctor is hearing you then you could get a second opinion. Remember your not alone. There are others like us out there.


    Katie Hawes 





  • 5.  RE: Looking for adult CHD friends with CHF -- New Member

    Posted 08-31-2022 05:07
    Thanks, sweet of you to say.  Definitely doing my therapy part -- individual, group, support, you name it.  I believe in the importance too, in another life I got my Master's in Psych.. I've found a few on Facebook, doing all the things I'm supposed to... just still feels like not enough ya know.

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    xx,
    Cait E
    California
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  • 6.  RE: Looking for adult CHD friends with CHF -- New Member

    Posted 09-01-2022 10:08
    Dear Caitlyn
    You are a miracle , that you have done so well over all these years is amazing. Please search for your purpose: career, family, good deeds. we are fortunate to have you in this world 🌎.

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655