Has helped and educated my family through information, inspiration, and hope. Rock On!
First I want to thank Anna for letting me tell my story on YouTube.
Name is Roger Potter - Am one of the original blue babies of the 1940's - born also with congenital heart disease - also one of the pioneer babies in open heart surgery in 1952 and because of my blue baby status still have shortness of breath - it tho has been arrested by 85% due to m activity in sports.
Am one of 22 co-authors of a soon to be published book 'cardiac athletes' vol 2.
Am very active in life and at the gym twice a week where I weight train - and at the young age of 72 have done a 605 lb leg press.
One of the reasons that I have not had that much trouble with my heart condition as others have is due in part to medical theory of the day - after surgery my scar had 5 years to heal and my heart also had 5 yrs to heal and get stronger and get a sturdy and stronger beat to it which I feel is not done today.
I have almost 40 yrs of exp in the Iron game(weights) and I am here to not only encourage but to answer questions u might have.
I did a podcast with Anna a few months ago. I think people like Anna and her organisation is important to help people get through the mental side of what's happened to them, help them understand what's happened to them is not uncommon, and they are not alone
Anna and Hearts United is such a wonderful resource for giving hope and information to the CHD Community. I love hearing the stories and connections through her radio show.
I am a CHD warrior with multiple, severe heart and lung conditions and have had three open-heart surgeries (plus, have a defibrillator, three stints in my right lung, a conduit in my heart, and just recently, a Melody Valve in my conduit in my heart). My CHD limits my physical activities; therefore, I spend my time doing low-keyed activities. One such activity is volunteering for Anna Jaworski with her Hearts Unite The Globe, Inc organization. I am her administrative assistant; I help keep her information neatly organized. It has been such a wonderful experience and opportunity to, not only be Anna's friend, but also assist Anna in spreading the message to the Congenital Heart Community. What Anna is doing (and has done) is a wonderful thing; it allows others' to feel connected and not so lonely when going through hardships. I look forward to and cannot wait for Anna's Hearts Unite The Globe, Inc to continuously flourish and grow into something even bigger.
When my son was born with HLHS in 1997, Anna was the first person I talked to who had a similar experiences. She gave me a parent’s perspective on raising a child with HLHS. It was desperately needed. Over the years, Anna helped me numerous times as my son had a stroke and then went through a very difficult heart transplant. I was happy to be able to give back and participate in several podcasts. HUG has helped so many over the years and provides a great service to the CHD community.
I was born with Tricuspid Atresia and developed Pulmonary Stenosis due to my first surgery. I have had 4 heart surgeries, but no Fontan. I live with low oxygen levels. I work full-time as a college professor, I am married with 3 cats as our children. I shared my experience of going through early menopause with Anna. If my story can help anyone else with CHD, I am willing to share. I am glad Anna is reaching out to cover all areas of CHD life.
I have been involved with HUG, for several months, and I must say that I think they are doing extremely important work with both the congenital heart defects community, as well as among the bereaved.
I was invited to do a podcast about my late father, and I have been helping them ever since whenever I can. There work is a blessing.
I met Anna many years ago via the Internet and then in person. Our children are both heart warriors. When my daughter was a teenager, Anna encouraged me to write for her book, Heart of a Mother. Over the years we have become wonderful friends who have a common mission of educating about and spreading awareness about CHD. When Anna began her radio show, I volunteered to help. Each week I help spread awareness and educate by sharing information on social media about the upcoming Heart to Heart with Anna radio show. I have also been a host and guest on the show. This project helps many CHD families! Volunteering for this organization is a full filling way to give back to our CHD community.
I am the National Program Director for Mended Little Hearts, but more importantly, I am a mom of a 15-year-old with Double Outlet Right Ventricle who is a Fontan patient. Our journey started out very rocky and scary followed by many years of fairly smooth sailing, for which we are extremely grateful. Recently, we are dealing with some liver issues that sometimes keep me up at night. However, through organizations like Mended Little Hearts and Hearts Unite the Globe, we are connected to countless other families on a very similar journey. We are able to build each other up and support each other during some of our darkest times. Hearts Unite the Globe helps us tell our stories, educate others, and give hope. I am very thankful for Anna and for this charity.
Hi. I have Tricuspid Atresia, HRHS, which means I have a single ventricle doing all the pumping of my heart. I am almost 30 years post Fontan, the final paliation surgery. I have been living a good life, although I have had several arrhythmia issues in the past few years. I shared my story on the podcast of HUG “Heart to Heart”, p and I felt it game me the opportunity to let others know that having a complexed CHD like I have, doesn’t mean you can’t have a good and productive life. It made me feel good others could possibly be inspired by my story. The HUG organization is a great way of getting CHD information and hearing stories from people with CHD.
Was great to be able to share my brothers story. It helps me keep his memory alive
My daughter was born in 1997 with a complex heart defect. At age four she developed Autism and at Age 13, Epilepsy. She left us at age 15 and eight months. Her short life gave us the insight to see who we were and how strong we could be. Her contribution to us, as parents was unmeasurable.
As host of Heart to Heart with Michael, a program for the bereaved community, I reach out to others in an attempt to share our stories. It is our fervent hope that these stories will help our listeners with comfort and advice. It is important for bereaved families to know that they are not alone and that others go before them with the same questions, the same hopes and the same anger.
We believe that grief shared, is grief lightened: and, to that end, we strive to bring comfort to other families who have lost loved ones.
Meeting people from around the world on this program has given me comfort and I hope to be able to share it with others as well.
Please give us a listen to meet some of the most interesting people in the world.
I am EXCITED to share my thoughts on this most WONDERFUL Nonprofit group of hard working, informative folks at Hearts Unite the Globe Inc. Having a daughter born with Congenital Heart Disease (CHD) I find myself even after 32 years of experience, turning to those who most understand our situation and maybe still seeking answers to the things that so many of us face on a daily basis.
I work with this organization as the webmaster and sometimes that means digging for information on the web regarding CHD throughout the world that we feel others may benefit from and get the most updated, extensive information out there not only for those of us who have been doing this a long long time, but for the new and unexpected parents who are just starting their search for the Who, What, Where, When and even more importantly, WHY they are now faced with the challenges that lie ahead for them.
Many THANKS to all of the HUG volunteers and staff, and especially Anna and Frank Jaworski, whom I will be forever grateful to for opening this door of opportunity for the entire CHD community.
Heart Mom of Jessica Vignaroli