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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Original Message:
Sent: 09-01-2022 23:09
From: Peter Kilcline
Subject: Young Heart Patients
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
Original Message:
Sent: 08-29-2022 19:53
From: Caitlyn Ellery
Subject: Young Heart Patients
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
Original Message:
Sent: 03-28-2017 11:27
From: Marilynn Huffman
Subject: Young Heart Patients
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