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Growing Up with Tetralogy Fallot

  • 1.  Growing Up with Tetralogy Fallot

    Posted 01-21-2019 19:56
    Hello!

    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,




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    Tina Marshall
    Cranberry Twp PA
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  • 2.  RE: Growing Up with Tetralogy Fallot

    Posted 01-22-2019 08:32
    Thank you for sharing wonderful story. It is an inspiration and a great source of encouragement for others facing similar challenges. Continue to take care. Millie 



    Sent via the Samsung Galaxy Alpha™, an AT&T 4G LTE smartphone



    Original Message


  • 3.  RE: Growing Up with Tetralogy Fallot

    Posted 01-22-2019 08:50
    Hi Tina,
    It's great to connect with another Tet person. I too was treated at Children's but in the mid '50s while heart surgery was still in its infancy. I had emergency surgery at age 4 and total correction at 12. Prior to the correction, I had sepsis and they found an aneurysm off the aortic arch. Thankfully, I came through it all. 
    I never had the stamina that you describe, but I felt the most normal I had ever been and I was grateful. 
    I eventually married and had one child but had gone into failure in the first trimester. I did go on to have a successful birth and that's all I could ask for. I was admonished to never have another pregnancy because it could cost me, the baby or both our lives. But wouldn't you know, the OB said I could try but would have to take things easy. Talk about confusion. 
    I have done fine over the years but then developed ventricular arrhythmias and pulmonary hypertension. I have been managed successfully and feel relatively good. 
    I am interested in the adult program they have at Children's. I am followed at Presby. 
    Since you are in the Pittsburgh area, maybe someday we could meet. PM me if you are interested. 
    Thanks for your input. It's nice to be able to share these things with people who understand.

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    annette smith
    saxonburg PA
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    Original Message


  • 4.  RE: Growing Up with Tetralogy Fallot

    Posted 01-23-2019 11:49
    I am a new member and I am looking forward to reading others experiences and hopefully add encouragement and support along the way.
    I was born a TET baby in 1952 in a small farming town in Indiana. No surgical fix had come along yet, so my folks were told that I was not going to live a long life....that most likely I would not make it past being a toddler. I was told by my mother and others in my family that when I was a year old, she held me up to the Lord and said "he's yours Lord." Well.....here I am at 66 years old. Married. Retired 4 years ago after working for a company for 20 years.
    I have had 3 open-heart surgeries that all were tied to my CHD. Almost miraculously, I made it to age 12 when they did the first corrective. It was still relatively new, and my scar from it runs horizontal from arm pit to arm pit. My second was at age 49 while I was engaged to my wife. Being a TET child and other circumstances made me a real LATE bloomer! The third happened just before turning 60. The scars from both of those run vertical. I can't help but look at those scars and see a cross permanently inscribed on my chest. I don't have to wear a cross on a chain.
    I have had incredible surgeons, cardiologists, and great health care all my life. But beyond all that, what my mother did in faith when I was a year old is the ultimate reason I live today. I believe the cross of scars on my chest is confirmation of that.
    Prayers and blessings to all going through their CHD journey in life!

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    Craig Durbin
    Retired
    Harriman TN
    My grace is sufficient for you. For My power is made perfect in weakness. 2 Corinthians 12:9
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    Original Message


  • 5.  RE: Growing Up with Tetralogy Fallot

    Posted 01-23-2019 14:56
    Welcome Craig:
    As another Tet baby, my first surgery had a similar scar. I guess since it was all so new, that was how it was done. My subsequent surgery was a "T". 
    We are lucky for the good health care we received. 
    It's good to have you in the group. Until this group, I had never met anyone with a similar story. 
    Take care. Continued health. 
    Annette

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    annette smith
    saxonburg PA
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    Original Message


  • 6.  RE: Growing Up with Tetralogy Fallot

    Posted 01-23-2019 13:04
    Hi Tina!

    I just wanted to welcome you (and everyone else). Thank you for sharing your story! My son is almost 10 and sees the Children's Hospital of Pittsburgh Cardiology team! We've been so blessed being able to be near a top notch center for his care. I'm east of the city in the Irwin/Greensburg area. I'm so excited to hear from adults with CHD and how they are doing because it gives me hope that my son will have a long and successful life. 

    Thanks again for sharing!

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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    Original Message


  • 7.  RE: Growing Up with Tetralogy Fallot

    Posted 01-24-2019 15:09
    Hi Andrea,
    Your son will do fine. He has great doctors and a top facility. Techniques have been refined so much more than when I had my surgery. 
    I am now a (hate to admit) 67 year old with a grown daughter and two wonderful grandchildren. 
    Enjoy your son, he has a bright future ahead of him. 
    Take care. 
    Annette

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    annette smith
    saxonburg PA
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    Original Message


  • 8.  RE: Growing Up with Tetralogy Fallot

    Posted 01-23-2019 13:22
    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!!
    Camille

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    Camille Richards
    601-984-4567
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    Original Message


  • 9.  RE: Growing Up with Tetralogy Fallot

    Posted 01-23-2019 14:45
    Thank you Camille for your thoughtful response. It is refreshing to hear of someone in the field that is supportive of patients. So often because we don't have "outside" appearances people can't understand that at times, it's all we can do to get back to our car. ​
    I will certainly look into the groups that you have suggested. 
     Thanks again for your work in the field. 
    Sincerely,  
    Annette

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    annette smith
    saxonburg PA
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    Original Message


  • 10.  RE: Growing Up with Tetralogy Fallot

    Posted 01-23-2019 16:44
    I appreciate the responses! Very kind and encouraging.
    Some history. My 1st open-heart was done June 12, 1965 at Jackson Memorial in Miami by Dr. Thomas Gentsch. I was among the "pioneers" as Camille and Annette mentioned. A few years after me, Dr. Gentsch was among the very first few in this country to try heart transplantation.
    My 2nd was done at Childrens Hospital in St. Petersburg Florida November 14th, 2001 by Dr. James Qiuntesenzza. He repaired my mitral valve. The 3rd was done by Dr. Brian Kogon at Emory University Congenital Heart Center on October 9, 2012. He replaced my aortic valve with a tissue valve which also ran into a graft to repair an aortic aneursym.
    I am very grateful again for the incredible care and all the advances made over the years that offer so much more hope now for CHD "kids".
    I have lived and continue to live more life than I ever thought I would as a child!
    Gratefully to all,

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    Craig Durbin
    Retired
    Harriman TN
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