Hi Tina, Annette and Craig,
You all are SO lucky to have found each other! Having someone with your same condition to listen to and share stories is a great way to learn about what you can and cannot do. Its also a great way to find the resources you need to take the best care of yourselves. I am a provider in an adult congenital heart program in Mississippi and I rely SO much on my patients to tell me what they need to know, how to navigate healthcare, and what scares them. I cannot imagine life with a chronic heart condition and most providers can't. Reading your stories is absolutely inspiring! Craig and Annette, you both lived through a very scary time in medicine; before surgical corrections were "fine tuned". Unfortunately, there were some procedures that were tried that did not have good outcomes and it was better to do nothing than to try something with a high death rate. Tina, you are a "thriver"; you got your surgery early enough and you were able to catch up physically with your peers! Annette, going through a huge surgery after a major complication of sepsis is nothing short of a miracle!
Each of you has an incredible story that has lead you to where you are today. Thank you for sharing and reaching out to others to navigate healthcare and LIFE!
I have been a part of the Adult Congenital Heart Association (ACHA) for 6 years and I have valued their resources when it comes to defect information, guidelines, clinic referrals, and conferences. They are an organization made up of providers like me, people with CHD, family members, caregivers, friends, and spouses. Take a look at their website and see if there are any resources that you need. Its www.achaheart.org
. Tina, they have a huge group of CHD folks that can get you connected. AND the ACHA is in Philly! They have meet and greets all over the country, heart walks, advocacy groups for legislation geared toward CHD health, an Ambassador program that matches people to others with their defect, monthly webinars with great information, and a national conference every 2 years. It's a great resource and I think all 3 of you would benefit from it. I love Mended Hearts for having this amazing platform for people to meet and share what they know.
I hope you all have a wonderful day and keep on Thriving!!
Sent: 01-21-2019 19:56
From: Tina Marshall
Subject: Growing Up with Tetralogy Fallot
My name is Tina and I have a mended little heart that has grown up and is growing older! I was born with the congenital heart defect, Tetralogy of Fallot. It was the 60's so I needed to wait for surgery to repair my heart until I was 6 years old. In the meanwhile, I had a shunt that saved my life at 15 months old and I had blue lips and was short of breath often during my childhood, but I was able to deal with it - stop, squat and catch your breath! The docs at Children's Hospital of Pittsburgh took great care of me. I was so excited to have my surgery so I could finally run and play with my friends! After my total repair at the age of 6, I would flash my scar and say it was an exclamation point with two dots on the bottom( drain tube scars) because I was extra excited and happy to run and play! I did just that. I participated in many activities growing up - dance lessons, roller skating lessons, cheering through high school. I had two full term pregnancies with healthy babies delivered naturally with no complications. Life has been a GIFT!
I'M LOOKING FOR OTHER MENDED LITTLE HEARTS THAT ARE GROWING UP & OLDER!
Children's Hospital of Pittsburgh recently added an Adult Congenital Heart Clinic. I'm thankful for annual check ups as I know things can get tricky as I get older. I'm 52 and when I was 47, I began to have heart arrhythmia's - Atrial Flutter. I'm on a beta blocker and doing well. I have a leaky pulmonary valve and it probably will need to be repaired in the future. I'm faithful to testing - Cardiac MRI and the dreaded 30 day heart monitor in the hopes that it will detect things early so I can continue to lead a full life.
I realize not much is known about TET babies as we grow up and arrhythmia is a challenge and a concern. I welcome hearing about your experiences. I also would love to offer support and hope to children and their families who are born with heart defects.
Praying for all heart patients,
Cranberry Twp PA