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Parlez-vous Français?

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Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

I love getting feedback from Listeners and I received another request after our program Advancements in Understanding the Liver Part 1 and Part 2 aired. A Listener wrote in with a request — could we possibly translate the program into French?! Since I have not written much in French since I was a senior in high school, I knew the task was beyond my meager skills so I reached out to others I knew in the congenital heart defect (CHD) community.

It didn’t take me long at all to know who I hoped would help me. Many, many years ago, before the Internet was made more user friendly, we used to have listservs which were ways we could connect with others — the precursors to MySpace and Facebook, listservs didn’t have photos, videos or anything fancy. They were just notes sent back and forth to the group. One such group I belonged to was for parents of children with CHDs and that’s where I “met” Helen Bishop. I discovered that Helen Bishop was a French teacher and since my grandmother’s maiden name was Blanchette, and I’d studied French in high school, I felt another connection with her!

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In 2010 I finally published the book The Heart of a Father which is a compilation of essays by men affected by congenital heart defects. I “met” men from all over the world and I also “met” many of their wives. One of the men who wrote an essay for the book was David Simpson. His wife Helen is a French teacher in England.

I knew I had two French teachers, who were also Heart Moms to turn to. When you get some Heart Moms on a mission, you just know things will get done! I also posted a note on the Heart to Heart with Anna Facebook page and on my own Facebook page and then I had even more people offering to help.

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Dr. Fred Wu

Dr. Wu, the Guest of the original program that started this flurry of activity, is helping me identify a French cardiologist to actually record the program. A bilingual Heart Mom is going to be the Guest Host for the program. Once Helen B. and Helen S. translate the script into French, we will move forward with recording the very first French episode of “Heart to Heart with Anna.”

One of the missions of Hearts Unite the Globe, the nonprofit organization that brings this podcast to the CHD community, is to unite the entire CHD community. Creating programs in languages other than English is a step in the right direction so that we can truly be united.

 

The Roadmap to Success For Complex CHD Survivors

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Dr. Gil Wernovsky

What an honor and a pleasure it was to talk with Dr. Gil Wernovsky about his vision for the future of pediatric cardiology related to care of those with critical congenital heart defects! He has kindly given us copies of some articles that he mentioned in his podcast.

Dr. Wernovsky’s article is entitled, “Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease” and is authored by him, Heart Mom Stacey Lihn and Melissa Olen (a nurse who worked with Dr. Wernovsky). I love how he collaborated with people from all aspects of the CHD community to come up with this concept and I’m hoping it’s an idea that will catch the CHD world by storm! This is exactly what we need to reduce the stress that many of us Heart Parents feel regarding the treatment of our Heart Warriors (HW). It really is time for us to know what kinds of tests we can expect our HWs need to have and for anticipatory screening to be done, and baselines established so we catch any “consequences” of having a funky heart.

Dr. Wernovsky talked about an article by Brad Marino, M.D. et. al. entitled, “Neurodevelopmental Outcomes in Children with Congenital Heart Disease: Evaluation and Management” which is available free of charge online. This article speaks to the neurological consequences of having a congenital heart defect.

It amazes me how Dr. Wernovsky keeps track of all of the articles he’s written considering how prolific he is! I asked him if he remembered an article that was a retrospective study conducted in the 1990s and he did! This article is entitled, “Inattention, Hyperactivity, and School Performance in a Population of School-Age Children with Complex Congenital Heart Disease” and it is also available free of charge at the given link. This article was actually published in 2008 but I think it provided some important information.

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The last bit of news I am excited to share is about the Baby Blue Sound Collective. One of the most amazing things to me about this group is that the songs are written by doctors, performed by doctors, nurses, techs, and even some parents of Heart Warriors.

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Dr. Gil Wernovsky at the piano

Dr. Wernovsky even gave Heart to Heart with Anna the right to use one of the songs from the album for the podcast! So now Heart to Heart with Anna has a funky new sound! Let us know what you think about it.

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Some of the members of the Baby Blue Sound Collective

If you purchase their new CD, “Home. Tonight. Forever” the proceeds will go to The Children’s Heart Foundation which is a nonprofit organization whose sole mission is to provide funds for research related to congenital heart defects. They recently joined forces with the American Heart Association and funded more than a million dollars worth of research. What they’ve done is nothing short of miraculous since all of that was inspired by the life of one little boy named Sam. I love how the CHD community has pulled together to make music and fund research all with the hope of improving the lives of those affected by 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).

New Interactive Chatroom

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Image courtesy of pixtawan at FreeDigitalPhotos.net

“This is an extremely rare condition,” the doctor said to me as he was detailing the anomalies of my son’s heart. I left the room where he talked to us and discovered there were two other children in the hospital with the same “rare condition” my son had and another would be admitted before Alex was discharged. Within days I had started a fledging support group comprised of 4 unlikely families — a military family, a teacher’s family, a nurse’s family and a mother with a newborn — all of us from different cities, different walks of life but with one very important thing in common — hypoplastic left heart syndrome — a jumble of words none of us had ever heard of before.

I think the need to talk to others is fundamental. We all need to know that we’re not alone. We crave understanding, support and acceptance. I think that’s why MySpace, Facebook, Twitter, Instagram, Snapchat, YouTube, LinkedIn, Google and so many other social media sites exist. People have an intense need to be part of something bigger than themselves.

The congenital heart defect (CHD) community now has a unique opportunity to interact with one another while discussing topics of interest with one another. Just this year, 2017, Hearts Unite the Globe (HUG) has launched two brand new podcasts — Heart to Heart with Michael and Heart to Heart with Nicole and David while continuing to also produce Heart to Heart with Anna, which has just begun its 9th Season of programming. Well over 100 Guests have been on these 3 podcasts and interacted with one another but now the Hosts and Guests will have an opportunity to interact with their Listeners, too.

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Hearts Unite the Globe (HUG) has created a chatroom with Paltalk. Now on Tuesday, Wednesdays and Thursdays starting at 11:00 Central Time (USA), people will be in the HUG Podcast Chatroom listening to one of the podcasts and talking with Listeners. It will be a chance for people to share their own stories, to comment on that week’s podcast or to ask a question of the Guest(s). This is an opportunity for our community to interact in a meaningful way.

Won’t you join us? It’s very easy to interact with us. Yo install PalTalk:

1. Go to Paltalk
2. You will see
Join Our Global Video Chat Community
Meet.
Connect.
Video Chat.
Then the words
“Free Download” — click on it.
3. On the bottom of your screen it will ask you if you want to run, save or cancel; click on run. Then allow your computer, phone or tablet to accept the program by clicking on Yes.
4. Click on “I agree” if you agree to their terms of use and it will start the download process.
5. When that is done, it will ask you for a nickname, password and email address.
6. After filling everything in you are then connected to PalTalk
7. Find HUG Podcast Chatroom and then you can join our discussion Tuesday-Thursday at noon Eastern Time (USA) through the programs (the Admin will play the show so we can all listen together). Feel free to chat via text in the room while the show is going on so you don’t have to remember your questions at the end. When the program is over, we’ll discuss the questions and comments that have been posted and the microphone will be open to talk with us and share questions, comments or thoughts.
FYI:
• Tuesday at noon Eastern Time (USA) is Heart to Heart with Anna
• Wednesday at noon Eastern Time (USA) is Heart to Heart with Nicole and David
• Thursday at noon Eastern Time (USA) is Heart to Heart with Michael
• New episodes of these 2 programs will air at the beginning of the month and will be repeated throughout the month but since the chat is interactive, every week will be different. Come back every week to meet new members of your community and to weigh in on that month’s program. It’s a great opportunity, too, to let our Hosts know if you’d like to be a Guest on their program!

“Heart to Heart with Anna” has Babies!

Okay, that title may be a bit misleading. Anna is certainly not having babies at this point in her life but her podcast has had two brand new podcasts spin off from her program!

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Loyal Listeners to Heart to Heart with Anna will recognize the voices of the Hosts of Heart to Heart with Nicole and David. Nicole Vickery and David Franco are both Heart Warriors. Their podcast will empower the adult congenital heart defect community. Nicole is a tetralogy of Fallot Heart Warrior and David is a cc-transposition of the great vessels Heart Warrior. You can listen to Heart to Heart with Nicole and David any time on Spreaker.

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The 2nd “baby” to spin off from Heart to Heart with Anna is Heart to Heart with Michael. Many faithful Listeners have heard Michael Liben’s voice. He came on Heart to Heart with Anna when she went around the world in Season 7 when he talked to Anna about healthcare for CHD Heart Warriors in Israel and he’s been on a number of Anna’s LIVE episodes. Michael’s precious daughter, Liel, passed away when she was just a teenager. Michael’s program intends to empower the bereaved community. His first Guest was Nancy Jensen. You can listen to Heart to Heart with Michael any time on Spreaker.

Anna also broadcast a new episode last week! Season 9 started with a bang with Anna’s episode entitled “Stem Cells for an HLHS Heart” featuring Jennifer Gutman talking to Anna about a cutting edge program being conducted at the Mayo Clinic where stem cells are gathered and then used during one of the staged procedures to treat hypoplastic left heart syndrome. You won’t want to miss that program!

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Another new “baby” is Hearts Unite the Globe’s new chatroom! Download the free Paltalk app and then join us every week as we listen to and chat about our programs! It will be a great way for Listeners to give feedback to the Hosts and Guests of whatever HUG podcast they listen to. Join us in the HUG Podcast Chatroom each week Tuesday through Thursday at noon Eastern Time (USA) to listen to and chat about that day’s program.

Follow the instructions below to install PalTalk:
1. Go to Google and type in PalTalk until you see paltalk.com – Paltalk Live Video Chat – appear in the search results. Click on it.
2. You will see
Join Our Global Video Chat Community
Meet.
Connect.
Video Chat.
Then the words
“Free Download”; click on it.
3. On the bottom of your screen it will ask you if you want to run, save or cancel; click on run. Then allow your computer to accept the program by clicking on Yes.
4. Then click on “I agree”; it will start the download process.
5. When that is done, it will ask you for a nickname, password and email address.
6. After filling everything in you are then connected to PalTalk
7. Find HUG Podcast Chatroom and then you can join our discussion Tuesday-Thursday at noon Eastern Time (USA) through the programs (the Admin will play the show so we can all listen together). Feel free to chat via text in the room while the show is going on so you don’t have to remember your questions at the end. When the program is over, we’ll discuss the questions/comments that have been posted or the microphone will be open to people to talk with us and share their questions, comments or thoughts.
FYI:
Tuesday at noon Eastern Time (USA) is Heart to Heart with Anna
• Wednesday at noon Eastern Time (USA) is Heart to Heart with Nicole and David
• Thursday at noon Eastern Time (USA) is Heart to Heart with Michael
• New episodes of these 2 programs will air at the beginning of the month and will be repeated throughout the month but since the chat is interactive, every week will be different. Come back every week to meet new members of your community and to weigh in on that month’s program. It’s a great opportunity, too, to let our Hosts know if you’d like to be a Guest on their program!

Looking Forward to a New Year!

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I just finished doing my 7th LIVE show — one more to go to finish out 2016. It’s been quite a year and I’ll be doing a “Year in Review” next week. I’m looking forward to that because it’s been quite a year!

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I made one little mistake on today’s show. David Franco is an astute Listener and he asked me a question which made me realize I’d made a mistake. I was listing the places I’m looking forward to visiting in 2017 and I mentioned going to California for Podcast Movement 2017 but I said the wrong city! This amazing podcast conference will be in Anaheim, California in August 2017 — close to the time for the total eclipse of the sun which makes it the perfect time to plan a trip to the West Coast.

 

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My husband and I are very excited that we’ll be visiting the beautiful city of Victoria, British Columbia, Canada in 2017. We have been there once before and fell in love with the city and the people. I can’t imagine ever leaving the United States, but if I did, this beautiful city might be the one to lure me away!

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I’m looking forward to visiting lovely Lancaster, Pennsylvania — the city where I made my entrance into this world! My father was a school teacher way back in the 1960s where he taught children of all ages in a one-room schoolhouse. Most of his students were Amish or Mennonite children and they were wonderful students who were very compassionate. Thanks to the generosity of their parents, my parents had food on the table during the holidays. Schoolteachers had very small salaries back then, but Dad’s kind-hearted parents brought all kinds of food as gifts to my parents which did much to tide them over during the winter months.

I’m really excited about an opportunity to attend the 8th National Adult Congenital Heart Association Conference. I intended to attend it this year, but Hurricane Matthew totally messed up my (and everyone else’s!) plans. I’m happy the ACHA was able to reschedule the conference for 2017 and I’m looking forward to meeting all of my adult CHD friends there (and making some new friends!).

Today’s show was the 7th in a row that I did a live show with a Google Hangout following it. That’s something new I’m going to be trying out in 2017. We shall see how it goes. I’m wanting an opportunity to be able to interact with more Listeners. So far I’m posting the links on the Heart to Heart with Anna Facebook Page and my Facebook Timeline. I can’t mention it on BlogTalkRadio because I don’t know what the link will be until I open the Hangout and I can’t do that until right after the show airs. I’d love a suggestion for ways I can improve spreading the word about the Hangout.

That’s all for today! Thanks for listening to Heart to Heart with Anna and for checking out the blog. I wish you all a very Merry Christmas and happy holiday season!

P.S. Thanks to Pixabay for the beautiful images used in this blog!

Happy Holidays!

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I can’t believe it’s already December! So much is happening right now! I’m so excited we’ve been doing some LIVE shows and they are going well. We’ll continue having LIVE shows through the month of December and start with Season 9 in January 2017. Today we’re doing something new and different! Following the program, we’ll open a Google Hangout so we can talk face-to-face with our Listeners!

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We’re going to do this each week to have an opportunity to interact with our Listeners and have a chance to talk about what we discussed in the program. To find our Hangout link, check out the Heart to Heart with Anna Facebook page.

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