Mended Hearts Open Forum

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,




------------------------------
Tina Marshall
Cranberry Twp PA
------------------------------

------Original Message------

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,




------------------------------
Tina Marshall
Cranberry Twp PA
------------------------------

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.

------------------------------
annette smith
saxonburg PA
------------------------------

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!

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

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

------------------------------
annette smith
saxonburg PA
------------------------------

Original Message:
Sent: 01-23-2019 11:49
From: Craig Durbin
Subject: Growing Up with Tetralogy Fallot

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!

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

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!

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

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

------------------------------
annette smith
saxonburg PA
------------------------------

Original Message:
Sent: 01-23-2019 13:04
From: Andrea Baer
Subject: Growing Up with Tetralogy Fallot

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!

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

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

------------------------------
Camille Richards
601-984-4567
------------------------------

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

------------------------------
annette smith
saxonburg PA
------------------------------

Original Message:
Sent: 01-23-2019 13:21
From: Camille Richards
Subject: Growing Up with Tetralogy Fallot

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

------------------------------
Camille Richards
601-984-4567
------------------------------

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,

------------------------------
Craig Durbin
Retired
Harriman TN
------------------------------

Original Message:
Sent: 01-23-2019 13:21
From: Camille Richards
Subject: Growing Up with Tetralogy Fallot

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

------------------------------
Camille Richards
601-984-4567
------------------------------

WOW!  Craig I feel like I know you!  One of our surgeons who just left University of Mississippi Medical Center trained under Dr. Gentsch in Miami; your 2nd surgery in St. Petersburg was on my birthday when I was doing a traveling nursing assignment in Tampa; and Dr. Brian Kogon is now at our hospital doing our CHD surgeries!!  Small world! ​Glad you are doing well!
Camille

------------------------------
Camille Richards
601-984-4567
------------------------------

Original Message:
Sent: 01-23-2019 16:44
From: Craig Durbin
Subject: Growing Up with Tetralogy Fallot

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,

------------------------------
Craig Durbin
Retired
Harriman TN
------------------------------


Original Message:
Sent: 01-23-2019 13:21
From: Camille Richards
Subject: Growing Up with Tetralogy Fallot

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

------------------------------
Camille Richards
601-984-4567

WOW!  Thanks to all of you for responding!  It is so wonderful and I'm honored to meet you all! :)

Annette & Craig, you are definitely inspiring to me!  Things were still a bit iffy when I had my heart surgery in the 60's but to think you had yours back in the 50's and you are encouraging me.  Wow!  It is such a testament to the great docs we have all had and to your determination and yes, I agree, to our dear Lord above!  I work with special needs children for my job and I believe God sends his angels to watch over them.  I also believe he sent his angels to watch over us!  That in itself is an honor!  Very cool that you both have the same scar - that is like a cross!

Andrea, I have so much HOPE and EXCITEMENT for your son and other children who are born with congenital heart defects.  I'm in awe of what doctors are doing and how early repairs can be done - some even in utero!  I will continue to pray for all CHD kids!

Camille, thank you for being a caring provider!  We need your compassion and it truly makes a difference!  Thanks for sharing the Adult Congenital Heart Association site!  I have been on there many times trying to educate myself and my family participated in the Heart Walk in Pittsburgh!  I also would like to urge everyone to find an adult congenital heart clinic.  You can find a directory for ones in the USA on their site.  Adult Congenital Heart Association - Home 
I was told to never leave Children's Hospital and pediatric cardiologists because they know the challenges we may encounter better than the typical adult cardiologist.  Then, more recently at Children's they added the ACHC to treat us who have grown up there.  These docs are to have specialty treating us and also keeping tabs on what happens as adults age related to heart health.  I am very thankful to know the system  cares for us and will continue to care for us!  It's so reassuring!

Thanks again to all of you - Oh and Millie - thanks for your encouragement and kind words too!  Annette, I truly do hope to meet you in person since we live close!  Hope our PM will lead to a nice chat over coffee, tea, lunch.  

Praying for you all!

------------------------------
Tina Marshall
Cranberry Twp PA
------------------------------

Original Message:
Sent: 01-23-2019 17:35
From: Camille Richards
Subject: Growing Up with Tetralogy Fallot

WOW!  Craig I feel like I know you!  One of our surgeons who just left University of Mississippi Medical Center trained under Dr. Gentsch in Miami; your 2nd surgery in St. Petersburg was on my birthday when I was doing a traveling nursing assignment in Tampa; and Dr. Brian Kogon is now at our hospital doing our CHD surgeries!!  Small world! ​Glad you are doing well!
Camille

------------------------------
Camille Richards
601-984-4567
------------------------------


Original Message:
Sent: 01-23-2019 16:44
From: Craig Durbin
Subject: Growing Up with Tetralogy Fallot

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,

------------------------------
Craig Durbin
Retired
Harriman TN


Original Message:
Sent: 01-23-2019 13:21
From: Camille Richards
Subject: Growing Up with Tetralogy Fallot

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

------------------------------
Camille Richards
601-984-4567

------Original Message------

WOW!  Thanks to all of you for responding!  It is so wonderful and I'm honored to meet you all! :)

Annette & Craig, you are definitely inspiring to me!  Things were still a bit iffy when I had my heart surgery in the 60's but to think you had yours back in the 50's and you are encouraging me.  Wow!  It is such a testament to the great docs we have all had and to your determination and yes, I agree, to our dear Lord above!  I work with special needs children for my job and I believe God sends his angels to watch over them.  I also believe he sent his angels to watch over us!  That in itself is an honor!  Very cool that you both have the same scar - that is like a cross!

Andrea, I have so much HOPE and EXCITEMENT for your son and other children who are born with congenital heart defects.  I'm in awe of what doctors are doing and how early repairs can be done - some even in utero!  I will continue to pray for all CHD kids!

Camille, thank you for being a caring provider!  We need your compassion and it truly makes a difference!  Thanks for sharing the Adult Congenital Heart Association site!  I have been on there many times trying to educate myself and my family participated in the Heart Walk in Pittsburgh!  I also would like to urge everyone to find an adult congenital heart clinic.  You can find a directory for ones in the USA on their site.  Adult Congenital Heart Association - Home 
I was told to never leave Children's Hospital and pediatric cardiologists because they know the challenges we may encounter better than the typical adult cardiologist.  Then, more recently at Children's they added the ACHC to treat us who have grown up there.  These docs are to have specialty treating us and also keeping tabs on what happens as adults age related to heart health.  I am very thankful to know the system  cares for us and will continue to care for us!  It's so reassuring!

Thanks again to all of you - Oh and Millie - thanks for your encouragement and kind words too!  Annette, I truly do hope to meet you in person since we live close!  Hope our PM will lead to a nice chat over coffee, tea, lunch.  

Praying for you all!

------------------------------
Tina Marshall
Cranberry Twp PA
------------------------------

Hi - hopefully this thread is still active ??
I too was born with Fallot and had a full repair back in 1968 at 3 years of age  in Auckland , New Zealand  , still have the massive scar down the length of my chest  as a reminder ,
Good to read other long term survivors stories   , recently have been doing a bit of goggle research on the life expectancy of us lot and didnt really like what I was seeing  .. I dont go to the doctor all that regular and haven't seen a cardiologist for over 20+years  = question is am I a ticking time bomb ???

------------------------------
Glenn Thomson
------------------------------

Hello Glenn!
I lost track of this group due to an email change and move so I'm so glad you directly posted on my post so I was notified and could join Mended Hearts again!  I strongly recommend going to see a cardiologist that knows congenital heart defects, not just a regular adult cardiologist.  I would look for an Adult Congenital Heart Clinic in your area or contact your local Children's Hospital so they can direct you to the right doctors there.  I feel that being followed regularly has helped me to feel more in control of my health and therefore brings me peace.   Regular check ups helped to detect my heart arrhythmia and it helps to keep track of my leaky pulmonary valve that many of us have after repair.  I'm presently in discussions with my doctors about the right timing for my pulmonary valve replacement.  I have severe pulmonary regurgitation but with minimal symptoms.  This is how I believe we can be like time bombs if nobody is watching the bomb.  We need to accept that our repair wasn't a total correction.  It gives us many normal years but we should be aware of the fact that our heart repair can have issues many years down the road.  I hope you will find a good ACHC and get a good check up with EKG, Echo-cardiogram and MRI.  Those tests have really given us good information about how to proceed with treatment and have also given me peace of mind.  Welcome to the group and to taking care of your heart! :)
Tina Marshall - now residing in Colorado

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Tina Marshall
Berthoud CO
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Original Message:
Sent: 03-21-2022 00:05
From: Glenn Thomson
Subject: Growing Up with Tetralogy Fallot

Hi - hopefully this thread is still active ??
I too was born with Fallot and had a full repair back in 1968 at 3 years of age  in Auckland , New Zealand  , still have the massive scar down the length of my chest  as a reminder ,
Good to read other long term survivors stories   , recently have been doing a bit of goggle research on the life expectancy of us lot and didnt really like what I was seeing  .. I dont go to the doctor all that regular and haven't seen a cardiologist for over 20+years  = question is am I a ticking time bomb ???

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Glenn Thomson
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Hi Glenn, 

I too am a Fallot person. I recently asked my Adult Congenital cardiologist about what's the longest he has seen as far as survival. It seems that those of us who were the Guinea pigs in those early days of cardiac surgery, are still writing the book.  There are patients in their seventies now. I myself, will be 71 in June. Not bad for someone who would have most certainly died without my surgeries. 

I must tell you though, you must be followed with a good congenital cardiologist. It is foolhardy not to. 

Good luck to you and remember that this group is always here for you. 

Take care. 

Annette 

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annette smith
saxonburg PA
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Original Message:
Sent: 03-21-2022 00:05
From: Glenn Thomson
Subject: Growing Up with Tetralogy Fallot

Hi - hopefully this thread is still active ??
I too was born with Fallot and had a full repair back in 1968 at 3 years of age  in Auckland , New Zealand  , still have the massive scar down the length of my chest  as a reminder ,
Good to read other long term survivors stories   , recently have been doing a bit of goggle research on the life expectancy of us lot and didnt really like what I was seeing  .. I dont go to the doctor all that regular and haven't seen a cardiologist for over 20+years  = question is am I a ticking time bomb ???

------------------------------
Glenn Thomson
------------------------------

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carlo pinini
Engineer
TDLS
Miami FL
------------------------------

Original Message:
Sent: 04-09-2022 19:02
From: annette smith
Subject: Growing Up with Tetralogy Fallot

Hi Glenn, 

I too am a Fallot person. I recently asked my Adult Congenital cardiologist about what's the longest he has seen as far as survival. It seems that those of us who were the Guinea pigs in those early days of cardiac surgery, are still writing the book.  There are patients in their seventies now. I myself, will be 71 in June. Not bad for someone who would have most certainly died without my surgeries. 

I must tell you though, you must be followed with a good congenital cardiologist. It is foolhardy not to. 

Good luck to you and remember that this group is always here for you. 

Take care. 

Annette 

------------------------------
annette smith
saxonburg PA
------------------------------


Original Message:
Sent: 03-21-2022 00:05
From: Glenn Thomson
Subject: Growing Up with Tetralogy Fallot

Hi - hopefully this thread is still active ??
I too was born with Fallot and had a full repair back in 1968 at 3 years of age  in Auckland , New Zealand  , still have the massive scar down the length of my chest  as a reminder ,
Good to read other long term survivors stories   , recently have been doing a bit of goggle research on the life expectancy of us lot and didnt really like what I was seeing  .. I dont go to the doctor all that regular and haven't seen a cardiologist for over 20+years  = question is am I a ticking time bomb ???

------------------------------
Glenn Thomson

Thanks for the reply's  -  in my self I knew what the answers would be but needed a kick up the bum to move me along  ..
Will definitely be making an appointment with my family doctor (GP) and getting a general check up along with a discussion about a Cardiologist followup   .
Cheers Glenn .

------------------------------
Glenn Thomson
------------------------------

Original Message:
Sent: 03-21-2022 00:05
From: Glenn Thomson
Subject: Growing Up with Tetralogy Fallot

Hi - hopefully this thread is still active ??
I too was born with Fallot and had a full repair back in 1968 at 3 years of age  in Auckland , New Zealand  , still have the massive scar down the length of my chest  as a reminder ,
Good to read other long term survivors stories   , recently have been doing a bit of goggle research on the life expectancy of us lot and didnt really like what I was seeing  .. I dont go to the doctor all that regular and haven't seen a cardiologist for over 20+years  = question is am I a ticking time bomb ???

------------------------------
Glenn Thomson
------------------------------

Thought I would update where I'm at  -  went along to my Family Doctors and got to see a Doctor with an interest in heart  diseases  , had a talk about my  history and concerns etc  ,, all the standard questions he asked  i came back with a NO ,, blood pressure all good , had a listen to heart and no nasty noises to cause any worry ,,, I asked if worth getting refereed to a Cardiologist ? ,  his answer was NO  as there is no indication of a problem  at this time ,, got sent for some blood test just as a precaution but not expecting any thing to be abnormal . 
So thats a bit of a reassurance and I guess an indication of  the surgeons skill way back in 1968 ..

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Glenn Thomson
------------------------------

Original Message:
Sent: 04-14-2022 16:11
From: Glenn Thomson
Subject: Growing Up with Tetralogy Fallot

Thanks for the reply's  -  in my self I knew what the answers would be but needed a kick up the bum to move me along  ..
Will definitely be making an appointment with my family doctor (GP) and getting a general check up along with a discussion about a Cardiologist followup   .
Cheers Glenn .

------------------------------
Glenn Thomson
------------------------------


Original Message:
Sent: 03-21-2022 00:05
From: Glenn Thomson
Subject: Growing Up with Tetralogy Fallot

Hi - hopefully this thread is still active ??
I too was born with Fallot and had a full repair back in 1968 at 3 years of age  in Auckland , New Zealand  , still have the massive scar down the length of my chest  as a reminder ,
Good to read other long term survivors stories   , recently have been doing a bit of goggle research on the life expectancy of us lot and didnt really like what I was seeing  .. I dont go to the doctor all that regular and haven't seen a cardiologist for over 20+years  = question is am I a ticking time bomb ???

------------------------------
Glenn Thomson

Hi Tina!

What a great story!! I'm not a grownup Mended Little Heart...my issue (acute M/I) didn't arise until I was 65 and now I'll be 75 this year, and fortunately doing fine.  Just wanted to tell you what an uplifting story you shared and if I run across any grown Littles, I will definitely send them your way!!

Wishing you continued health!!
Kristi Wells
MH Chapter of Thurston County #130​​

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Kristi Wells
Centralia WA
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Hi!

my name is Ryskul

i'M from Kazakhstan 

I live here 

my son was born 03.27.2023 he has a Tetralogy of fallot and partial anomalous drainage of the pulmonary veins.

When our son was 5 months old, we had a Blalock Tausik shunt installed. We are waiting for a radical correction. thank you for writing your story. I am happy that people with my son's diagnoses are adults and live happy lives. you give me hope. be healthy

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Ryskul Murzakhmetova
Astana NY
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