Congenital Heart Defect/Disease

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21 tips for less stressful, more effective cardiology visits

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. theheartdialogues.substack.com/p/congenital-heart-disease-pa... #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
2 reactions
Post

21 tips for less stressful, more effective cardiology visits

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. theheartdialogues.substack.com/p/congenital-heart-disease-pa... #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
2 reactions
Post

21 tips for less stressful, more effective cardiology visits

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. theheartdialogues.substack.com/p/congenital-heart-disease-pa... #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
2 reactions
Post

Broken Hearted in Nevada: Julie's Story

Part 1 of 2 Congenital heart defects are the most common birth defect in humans, affecting 1% of the world’s population. In the United States alone, 40,000 babies are born with CHD every year.1. Of those babies, about 25% will have a critical CHD, requiring surgery in the first year of life. There is no cure.

In the last few decades, advances in surgical techniques and research mean that today, about 95% of those born with non-critical CHD and 69% of those born with critical CHD will live to see adulthood. Those medical advances were largely in the pediatric space and focused heavily on survival.

In recent years, estimates show that over 1.4 million adults are living with CHD in our country. But for this population, the U.S. medical system is woefully underprepared to treat them. You may have seen stories from actors, politicians, or athletes living with CHD who seem to have no issues receiving appropriate care, but what about everyone else?

Meet Julie, a 53-year-old woman living with critical congenital heart defects. She is a daughter, twin sister, and loving mother. Julie has miraculously outlived every grim prediction doctors made in her early childhood, despite the odds being overwhelmingly stacked against her.

For babies like Julie, born with congenital heart defects between 1970-1974, the biggest hurdle was surviving the first year of life. If they did reach their first birthday, the chances of surviving to adulthood were just 77-83%.

Heart surgery on infants did not become commonplace in the United States until the early 1970s. After a year of infant CHD surgery at Boston Children’s Hospital in 1972, surgeons had some data to work with. They realized that babies with critical CHD who died generally did so in the first few weeks of life. The rest of that decade saw a shift from surgery in infancy to surgery in the newborn period for these babies, with the first successful procedure coming in 1983 on an 11-day-old.

Julie had her first open-heart surgery at the age of 5 1/2 in 1976. Her childhood was filled with summer vacations, school, birthdays, and lots of visits to the pediatric cardiologist. Because there were no specialists for adults with congenital heart defects until 2015, Julie continued to see her pediatric cardiologist as an adult. Her heart remained stable until her mid-20s.

In 1995, at age 25, Julie gave birth to a beautiful, healthy baby girl. Researchers had barely begun to study adults with CHD and no one told Julie she should have additional cardiac care and monitoring during pregnancy (probably because they didn’t know yet). Standards of care for adults with CHD were not issued until 2008 with the next update coming in 2018.

After the birth of her daughter, Julie’s heart really struggled. By age 26, in 1996, she was back in the hospital for her second open-heart surgery. There was no road map for Julie’s medical team to follow and they were dealing with a long list of heart-related issues in her body. Not to mention, Julie lived in Nevada, where the healthcare system could barely serve its healthy population.

The surgery did not go as planned and took far longer than anticipated. As the procedure entered its seventh hour, extensive bleeding and the length of time on the bypass machine forced the surgeons to place Julie into a coma, with an open chest. She wouldn’t wake up for almost two weeks.

What happened during her 13-day coma is largely unknown. Medical records were not easy to access, and communication from doctors to family members was limited. Julie woke from the coma completely paralyzed on her right side, unable to hold, feed, or care for her young daughter. She didn’t know it at the time, but this would be a turning point for her health.

Facing yet another uphill battle in her young life, Julie persevered and recovered function on her right side with months of intensive therapies. She would go on living life, raising her daughter, and continuing to follow up with her pediatric cardiologist.

As she aged, additional health conditions arose and everyday tasks became more difficult. Julie could feel that something was happening in her body, but unfortunately, Nevada still did not have any adult CHD specialists that could investigate. Despite the herculean efforts of her pediatric cardiologists, Julie declined into heart failure and would require a full evaluation by a specialized adult CHD center.

The team at UCLA’s Adult Congenital Heart Disease Center confirmed Julie’s heart failure diagnosis, but she was blindsided by the severity of her disease. Without knowing they even existed, Julie never had the chance to use the ACHD care standards for her anatomy, and was now looking at evaluation for a heart transplant.

If Julie’s life were a feature film, it

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A pacemaker and a baby in the same year

For the latest edition of my newsletter, The Heart Dialogues, I spoke with Allison Holden, a Memphis-area real estate agent born with Transposition of the great arteries. We talked about her having a daughter, coping with health anxiety and why she’s starting to get more comfortable planning for the future. Read this one, and sign up to get future editions in your inbox! theheartdialogues.substack.com/p/congenital-heart-disease-pa...

#CongenitalHeartDefectDisease

A pacemaker and a baby in the same year

It wasn’t Allison Holden’s plan, but “everything just lined up perfectly.”
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What do you call a dear with no eyes?

No-Idea (No eye dear)! 😜 My 7 year old son, Joshua, told me that joke! It amazes me that he was born with a congenital heart disease and as per doctors, he might not live or have a normal life.  However, what is normal?
This joke I passed on to you! So his normal is to positively impact others lives daily. His boldness and extrovert spirit inspired me to live in my authenticity as well.
For the last 10 years, I could count on one hand how many people knew the under the radar triple life I have been living. As a physician, a patient with chronic auto-immune disease such as MS and as a parent with of a child with chronic disease.
Recently, I decided to tell my story with launching my new book, “The Parts We Don’t Talk About!” This is when you stop reading…lol..roll eye and say “not another motivational story about someone living their best life”. Instead, I decided to write a book about how the world viewed my “successes”, not knowing I face several failures and physical challenges daily. The book addresses biases during medical training from colleagues, racial inequality while seeking professional growth, pregnancy and the treatment of doctors living with chronic disease, such as Multiple Sclerosis. Not boring at all.

I am outing myself as a patient with MS, who is also a doctor, to inspire others to persevere in the midst of their difficult moments. That he/she/they may understand that in life there are no mistakes, only adjustments.
We need to finish this conversation! After all, I am shocked you got this far in the email. Please schedule a free one-to-one call with me via my website. www.drsimarta.com. This is the first step to creating change and more funny Joshua jokes!

Simarta Brennan-Prescod. MD/MPH
Mom, Wife, thriver, Entrepreneur, Speaker, Author

Website: www.drsimarta.com
Instagram @drsimarta
Facebook Drsimarta
LinkedIn: Drsimarta
Phone contact (727) 217-5153
Book: ISBN: 979-8-218-19016-3

Dr. Simarta Inc. | Author

As a speaker, author & physician, my mission is spread awareness of advocating in the healthcare system for yourself as a patient and loved ones to patient. Dr. Simarta.
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It’s been a bit

Hi!!!!
It’s been awhile since I’ve contributed and just plain been on the Mighty. I just wanted to say hi and I miss everyone here! Life has been crazy and I hope to eventually be here and contribute more. Love you all my mighty family #MightyTogether #Autism #Disability #ChronicIllness #CongenitalHeartDefectDisease

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A doctor opens up about her heart for the first time

“I just want everybody to know, especially in the CHD community, especially mothers having a kid with CHD, it’s a long and tough journey, but it can be a successful journey. It’s not a CHD that defines me or anyone.”

I spoke with Sara Taher, a 28-year-old doctor with a complex heart defect, about her rekindled faith, how her depression has affected her CHD and what it’s like getting cardiology care in Egypt.

Read the latest edition of my newsletter, The Heart Dialogues, and sign up to get future editions for free. theheartdialogues.substack.com/p/congenital-heart-disease-do... #CongenitalHeartDefectDisease #CHD

A doctor opens up about her heart for the first time

Sara Taher doesn't tell most colleagues or patients about her heart condition, worried they'll treat her differently. Now, she's ready to share.
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