Tag Archives: congenital heart defects

Listener’s Liver Question Answered

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Artwork thanks to the Cleveland Clinic

On January 24th and January 31st, Heart to Heart with Anna featured Dr. Fred Wu talking to us about the consequences of a Fontan heart on the liver. If you haven’t had a chance to listen to the podcast, it’s not too late. Advancements in Understanding the Liver in Fontan Patients Part 1 and Advancements in Understanding the Liver in Fontan Patients Part 2 covered a number of different issues. The heart is a very complicated organ and when it is not perfect, it’s not surprising that other organs may be affected.

Alisa wrote:  “I just listened. It was an excellent interview and I learned a lot. I do have one question. My daughter is scheduled for an elastography which to my understanding is a different form of an MRI. I am curious about Dr. Wu’s thoughts on that test versus MRI. Is there a way to find out? I know that not all centers have elastography machines, I think they are newer. I look forward to part 2 next week. The liver in Fontan patients is very scary. One other thing have you ever done a show on Fontan revision and when to do it and the pros and cons to the patient? If you have I would like to listen to it. Thanks for all you do for the CHD community!”

Here is Dr. Wu’s response:

Liver elastography describes a variety of techniques to measure the stiffness of the liver. This can be done using ultrasound technology or MRI technology. With ultrasound, sound waves are applied over the liver, and a computer determines how quickly those sound waves move through the liver tissue. The stiffer the liver, the more quickly the sound waves will propagate. With MRI, sound waves are also applied over the liver.  The MRI scanner then takes a series of images that visualize the sound waves moving through the liver and calculates the liver stiffness that way. The thinking behind all of these techniques is that the more fibrosis there is, the stiffer the liver will be, and that has indeed proven to be true when these techniques have been studied in liver patients.

The challenge in Fontan patients is that the venous pressures are chronically elevated, and this results in congestion of the liver. As it happens, congestion also leads to increased liver stiffness. Thus, there are studies that have described the results of transient elastography and shear wave elastography–two techniques using ultrasound–and MR elastography in Fontan patients, and all of them show that most Fontan patients have abnormally stiff livers. Unfortunately, it is difficult, if not impossible, to know how much of that stiffness is the result of congestion and how much is the result of fibrosis. It is a reasonable assumption that the very, very stiff livers are much more likely to have severe disease and that the livers with normal stiffness are probably only mildly affected, but most of the patients will fall into the gray area in between. 

The good news is that MR elastography is usually performed as part of a comprehensive MRI study of the liver, so you still get all of the information you would get from a standard MRI with the addition of the elastography data.

Anna answers the 2nd part of Alisa’s question — “We haven’t done a program about Fontan Revision but it’s certainly something we’ll consider doing in the future. Thank you for the suggestion! Since this is something that my son had to have done, I know how concerning it can be to have that possibility out there. Luckily for us, the results have been excellent and my son is doing very well — he’s working full time and writing a book. Stay tuned and we’ll see what we can do about putting a show together specifically about Fontan Revisions: Pros and Cons. Thanks for listening, Alisa, and thanks for the question!”

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Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

Do you have a question? Feel free to write to Anna here at her blog if you have a question or visit our chat room on Paltalk. Just look for the HUG Podcast Chatroom. We’re there Tuesday-Thursday from 11:00-noon Central Time (USA).

2016 News

I was not very good at keeping up with my blog last year but that’s going to change this year!

I’ve decided to start writing weekly with news of interest to “Heart to Heart with Anna” fans.

Gracy&meOne thing that I’m very excited about is that “Heart to Heart with Anna” has a new intern! Gracy Kheshtinejad is our new Assistant Producer! Gracy attends Stephen F. Austin and she is majoring in Mass Communication and minoring in Advertising. We met at the Adult Congenital Heart Association regional event (in Houston) because her boyfriend has a congenital heart defect. I was immediately taken with Gracy’s sparkling personality. This is a photo of us at our first face-to-face meeting in Waco, Texas for us to plan how Gracy will help “Heart to Heart with Anna” during her last semester of school.

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I feel very blessed to also be working with Monica Mossey. She was a Guest in Season One on episode #9 — ‘Surviving the Teenage Years with a CHD.’ In 2015 Monica started really helping out “Heart to Heart with Anna” by creating the slideshows on BlogTalkRadio that accompany every radio show. We even had one Guest who couldn’t send us any photos, but Monica found photos that were appropriate to the theme of the show to give Listeners something pleasant to view while listening to the show.

I haven’t had a chance to meet Monica in person yet, but we’re hoping to do so later this year.

“Heart to Heart with Anna” is preparing to conclude its 6th Season — Carpe Diem: Seizing the Day! It’s been so much fun to talk with CHD Survivors, Heart Moms and even an awesome Pediatric Cardiologist and Electrophysiologist!

The theme for Season 7 is ‘Congenital Heart Defects Around the Globe’ and will feature CHD community members from around the world. If you’re interested in being on the show, please feel free to fill out the form Be On The Show under the Shows tab on the website.

Let’s hope this is going to be a very Happy New Year!

Happy New Year!

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Dear Heart Friends:

I cannot believe today is the last day of 2014! This year has gone by so fast! this was our first full year of “Heart to Heart with Anna” and we’ve accomplished so much!

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Season One began with with VoiceAmerica on 11/12/2013. Although a regular season has only 13 episodes, VoiceAmerica gave us 2 extra episodes after a personal friend joined their network. “You Are Not Alone” was the theme. We produced 15 hours of programming and had 51 Guests on the show! The first season with VoiceAmerica had over 5000 Listeners!

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Thanks to Jessica and Amy Cowin, “Heart to Heart with Anna” continued after the first season. Season One was sponsored by Baby Hearts Press. Jessica and Amy ran a fundraiser so “Heart to Heart with Anna” could continue. The result was that the show moved to BlogTalkRadio which is a much more economical means of producing the show. All 15 episodes of Season One were moved over and then Season Two: There is Hope! began. Another 38 Guests joined the show over the course of the season.

Season Three: Finding Your Voice began in October 2014 with an author and will end the first week in January with other artists! We had three big changes with Season Three — 1) we went from a 60-minute program to a 30-minute program, 2) we also started airing our show on Spreaker (and they put our show on our YouTube channel, too!) and 3) we reverted to a 13-week season. With another 24 Guests and over 9000 Listeners since we started, “Heart to Heart with Anna” has touched many people in the three seasons we’ve been on the air.

“Heart to Heart with Anna” would not be possible without the help of many volunteers. Special thanks to: Callie Rickard, Mary Black, Frank Jaworski, Nancy Jensen, Lauren Bednarz, Amy Bennett, Brenda Vignaroli, Mary Ann Zima, Sheri Turner, Sue Dove and now Ryan Eland. I also really appreciate how wonderful all of my Guests have been since we started. We’ve had many survivors, doctors, parents, grandparents and other medical professionals who work with the CHD community. The show is a success largely because of the thought-provoking, compassionate interviews that have been conducted and the great amount of information that has been shared.

We’re looking forward to Season Four: Stories from the Trenches. We will take a 2-week hiatus to prepare for the season. If you’re interested in being on the show, contact Anna at Anna@hearttoheartwithanna.com.

Season 3 Line-Up of Shows

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Dear Friends of “Heart to Heart with Anna,”

I’m so excited to announce our new line up! Please let me know if you’re interested in being on one of these shows. The first two shows have already been taped but I’m looking for Guests for a number of the shows. The theme for this season is “Finding Your Voice.” Naturally, there are many ways we can find our voices. This season we will investigate many different ways we can find our voices.

Episode 1) An Interview with Heart Mom, Advocate & Author Lori Jones (already taped and available here: http://www.blogtalkradio.com/hearttoheartwithanna/2014/10/14/an-interview-with-heart-mom-chd-advocate-and-author-lori-m-jones)
Episode 2) Empowerment Through Helping Others in the CHD Community (with Wayverly Mouse-Evangelista, Susan Vanderpool and Natalie McGee). Here is the link:
http://www.blogtalkradio.com/hearttoheartwithanna/2014/10/21/empowerment-through-helping-others-in-the-chd-community

In no particular order (just numbered to help me keep track of them all!)

Episode 3) Irregular Heartbeats: When HLHS Survivors Need Pacemakers *
Episode 4) Living with Eisenmenger’s Syndrome*
Episode 5) Music Therapy while in the Hospital
Episode 6) Political Activist and HLHS Dad*
Episode 7) Alternative Heath Choices for CHD Survivors*
Episode 8) Forever Young: Raising a Child with Cognitive Impairment*
Episode 9) Art Therapy in the Hospital
Episode 10) Parents Advocacy when Your CHD Warrior Becomes an Adult*
Episode 11) Raising Money for CHD Research
Episode 12) How CHD Survivors (children) Tell other Kids About Their CHDs
Episode 13) Adults with CHDs — Becoming Self-Advocates*
Episode 14) Teen and Young Adult CHDers’ Rebellion — Tattoos, Piercings and Alcohol*
Episode 15) ACHDers on the Hill (being an advocate in D.C.)*

* potential Guest(s) identified but not confirmed

I’ve had many great suggestions from my Listeners and Guests regarding upcoming shows. Your emails are read by the host, Anna Jaworski, personally. We appreciate your participation and look forward to producing many more fun and interesting shows.

Back to School?

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Usually the end of summer — with Labor Day looming in the distance — signifies one thing to parents and children — it’s back to school time!

While many children look forward to being back in school, getting new school supplies and some new clothes, there are some children who are not so excited. These are the children who have been bullied and who fear the bullying will begin all over again when they go back to school.

Many parents of children with congenital heart defects have had the heartbreaking occurrence of bullying of their heart children. Sometimes the bullying occurs because the child looks small, can’t keep up with the other children, requires extra equipment or extra time to do things, get special treatment (like not having to run laps with the rest of the class or a key to the elevator) and these things can be fodder for bullies. What is a parent to do?

On “Heart to Heart with Anna” we will be discussing bullying and how to make our school environments safe for our congenital heart defect (CHD) survivors. There are things parents can do, and should do, to make sure their children are safe in school and to help prevent teasing or bullying.

There are other considerations heart families must make when it comes to sending a CHD survivor back to school. Is the child current on his/her immunizations? Has an individualized education plan (IEP) been established for the child if the child is behind his/her peers? If the child is 0-3, does he/she qualify for early childhood education? Who should know about the child’s heart defect? What kind of information should be provided to the school? Should the child wear some kind of identification that alerts people to the CHD condition? Should the parents plan to meet with their survivor’s classmates to talk to them about their child? At what age is that appropriate? When should those kind of parent advocacy events stop? When should the CHD survivor be his/her own advocate? How do parents teach their children to be advocates for themselves?

These are just a few of the considerations that families of CHD survivors should consider when preparing to go back to school. Go to Heart to Heart with Anna to hear the radio show about this topic.

A great article with tips for teachers, parents and students can be found here.

Education is empowering. When parents, teachers and CHD survivors work together to ensure everyone understands the needs of the CHD survivor, everyone wins. That’s a cause for celebration!

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Back-to-School Image courtesy of nuttakit / FreeDigitalPhotos.net

Cheerful School Boy Showing His Thumbs Up Image courtesy of photostock / FreeDigitalPhotos.net

 

 

Skipping a Beat

What is the number one cardiac arrhythmia? What heart condition affects over 3 million people in Europe alone? What is the fastest growing technique in cardiology?

The answer may surprise you. It isn’t about cloning, stem cells or any of the in utero procedures you might think it would be. The condition isn’t something that people talk about, yet 5% of the population over 75 suffer from it. That’s 5% of all adults. The percentage of adults with congenital heart defects (CHDs) who suffer from this condition is 15% — three times that of the population at large.

What is it, you may wonder? It’s atrial arrhythmias or atrial fibrillation. It’s commonly called Afib or AF in the heart world. This arrhythmia is characterized by a rate or rhythm problem with the heart’s beat. According to the National Heart, Lung and Blood Institute, “During an arrhythmia, the heart can beat too fast, too slow, or with an irregular rhythm. AF occurs if rapid, disorganized electrical signals cause the heart’s two upper chambers — called the atria — to fibrillate. The term “fibrillate” means to contract very fast and irregularly.”

Why is this important and why should people in the heart world care about this situation? The reason is that people with undiagnosed Afib are at a much greater risk for stroke and heart failure than those who know they have Afib and are under a doctor’s care for treatment of Afib.

This is especially important for the aging congenital heart defect population.  To read more, go to Baby Hearts Press Blog.

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