Category Archives: Advocacy

Podcast Movement 2016

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July 6th-8th in Chicago, Illinois I attended Podcast Movement 2016.  I attended the Podcast Movement conference to learn more about podcasting and ways to improve “Heart to Heart with Anna.” I learned so much I’m still trying to process it all!

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One of the most important contacts I made was with the guys at Buzzsprout. It all started with Co-Founder Tom Rossi. He explained how powerful Buzzsprout was, how they could really help me understand my podcast’s analytics (something I now understand is very important for me to know!) and will host my podcast very simply and easily. I really liked how Tom explained everything to me. He totally understood that I am not a techie and that I would need some help and he was very supportive and helpful.

 

Tom introduced me to Alban Brooke of Buzzsprout. This awesome Marketing and Customer Happiness Representative did indeed make me happy! To my dismay, I discovered that my show Heart to Heart with Anna was not on iTunes! Since so many people listen to podcasts on their phones, this had to change and Alban made it so! Alban found the RSS feed for Heart to Heart with Anna and submitted the show to iTunes. He told me it could take up to 2 weeks for the show to be available on iTunes, but to my delight, it was live the very next day!

Unfortunately, progress often happens by taking one step forward and two steps back. I was absolutely delighted that the day after meeting with Alban, Heart to Heart with Anna was on iTunes; however, I was dismayed to see that the show was listed in the art/comedy category! So I headed back to the Buzzsprout table and asked the guys for more help.

That’s when I was introduced to John Pollard, one of the terrific programmers at Buzzsprout! He saved Heart to Heart with Anna by changing our category listing from art/comedy to health — where it needed to be! I really appreciated all the kind help the guys at Buzzsprout showered on me. I also appreciated the cool pink t-shirt they gave me. Thanks Tom, Alban and John!

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Another great company I found out about at Podcast Movement 2016 is called ZenoLive. My mother doesn’t have a computer or a smart phone, but she does have a telephone. Thanks to ZenoLive, my mother can now listen to my show!

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It only took a few minutes to set up. Now Heart to Heart with Anna can be listened to with any telephone — not just a smart phone! Here is the phone number to listen to the only podcast devoted to the congenital heart defect community. You can hear the 5 most recent episodes of Heart to Heart with Anna by pressing the numbers one through five after calling 1-701-719-9932.

In my next blog, I’ll share photos and stories of the wonderful members of the congenital heart defect community I met on this journey!

 

#PrimeDay!

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You can use the QR code above to go directly to Amazon.com and take part in their AmazonSmile program. Amazon gives 1/2 of 1% to Hearts Unite the Globe (HUG) every time you use that link. Donations like that help to keep Heart to Heart with Anna, the only radio show (podcast) for the congenital heart defect community free for everyone.

Have you ever heard of Prime Day? If you’ve never heard of Prime Day, you can read more about it here at the People Magazine page. Basically it’s like a Black Friday day in July!

In order to celebrate #Prime Day, Baby Hearts Press decided to lower the prices on its books for one day only!

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That means that BHP’s only children’s book — My Brother Needs an Operation — will be sold for only $10 on Amazon for today only.

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The Heart of a Mother, BHP’s bestselling book, will be available for half price — only $12.50 today only.

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Lastly, The Heart of a Father, BHP’s latest book will be available for only $15.00 today only. Baby Hearts Press has been the only sponsor for Heart to Heart with Anna, so we really appreciate it when people support Baby Hearts Press.

Please use this link or the QR code above  to go to Amazon and HUG will get part of your purchase price.

Why is donating to HUG important? What good has come from Heart to Heart with Anna? We’ve helped parents all over the globe with our educational and inspirational shows. We made contacts that helped us save Elvis. Our shows bring the congenital heart defect community together to celebrate the lives of those in the CHD community. Most importantly, thanks to BHP and Heart to Heart with Anna, people in the CHD community know that they are not alone.

New Single Ventricle Heart Research

nasa-heart-pumpFigure courtesy of NASA

As the mother of a son with a single ventricle heart, I am always excited to see advancements in research for people born with “half a heart.” There is some very exciting news for those of us in the heart world who have had a Fontan Procedure. You can read about this research all over the Internet, but I really liked how Technology.org wrote about it.

Instead of just regurgitating what the article discusses (it’s short and better for people interested in it to just check it out themselves since there’s a cool, short video clip to accompany the article), let me briefly discuss the importance of this discovery. Twenty-one years ago, when my son was born, there weren’t that many people with hypoplastic left heart syndrome surviving to adulthood. In fact, the surgeon said my son only had a 25% chance to survive to age 5 if he survived the first surgery. Way back then the doctors had no clue what would happen to adult survivors because there wasn’t a big enough cohort to warrant anything more than case studies. All of that has changed recently.

What kind of problems can occur when you’re born with half a heart? Not surprisingly, the heart can simply wear out. Other problems can occur, too, though because the Fontan physiology changes the heart’s function from that of pumping blood to the body and to the lungs (for oxygen) into a sole-purpose machine — pump the blood to the body at all costs. The surgeons create a baffle that carries the oxygen-poor blood to the lungs to get oxygen and it travels there passively thanks to the natural blood pressures that occur in the heart. One of the potential consequences of a Fontan heart is that the body may create more red blood cells than a heart-healthy person. This is a way the body can compensate for having a lower oxygen saturation level. It’s pretty miraculous the way it works but it isn’t perfect.

One of the potential problems comes from the other organs having to process so many red blood cells. This can really tax the liver. This can cause liver enlargement. Another potential problem is that the heart may just wear out. Sometimes the walls of the heart thicken. One of the most common problems simply comes from having the heart operated on multiple times. Scar tissue can develop on places where the heart has been cut. This maximizes the opportunity for arrhythmias to occur.

The new device the NASA scientists and doctors at Indiana University have created won’t be able to fix all of those problems but it might help a person whose heart is simply wearing out. There are not enough donor hearts available for all of the people waiting for a heart so this might help people live a little longer until a heart is available or perhaps it will work sufficiently for a transplant to be unnecessary!

In the meantime we parents are going to keep watching for the latest research available to help our Heart Warriors. A dear friend of mine is doing much more than just watching. She is helping to raise money for research by walking . . . a lot! Anita Moreno Marcelo is the mother of a Heart Warrior who needs for research to stay a step ahead of him and his mother is willing to put one foot in front of another to walk her way to a cure for her son. Check out Anita’s new passion:  The Gabriel Project. If you’d like to walk and raise money for research, too, please let Anita know. If you just want to applaud her efforts, those notes of encouragement are happily received, too. It’s amazing what we can accomplish if we all work together.

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Image courtesy of zole4 at FreeDigitalPhotos.net

Heart to Heart with Anna & iHeartRadio

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One of the amazing things about Spreaker is that they have a partnership with iHeartRadio. Once a show has 100 Followers and meets a number of other criteria, it can petition iHeartRadio to carry the show. ‘Heart to Heart with Anna’ did that yesterday!

February, also known as Heart Month, was incredibly busy for ‘Heart to Heart with Anna.’ Every single day a show was broadcast. Tuesdays featured brand new shows with the new theme for Season 7: Congenital Heart Defects Around the Globe. All of the other days had encore presentations with new introductions. Our goal was to also get to 100 Followers by the end of the month. By March 1st we achieved that goal!

I so enjoyed reconnecting with former Guests, re-editing some of the shows (I know a lot more about editing shows now than I did in the first few seasons of the show) and simply listening to the shows over again. Our shows are timeless. The feelings and topics we discussed in the past are as relevant today as they were when we first aired the shows. It still amazes me how many wonderful people have taken the time to come on the show, to listen to the show and to care enough to help us get to 100 unique Followers so that we could petition iHeartRadio to carry the show.

The show will go through a review process at iHeartRadio. If we’re approved, when it’s time to broadcast another show, a little iHeartRadio logo will appear and allow me to share the shows through iHeartRadio (we already share via Spreaker, iTunes, YouTube and BlogTalkRadio). There are 80 million iHeartRadio users. That means we’ll have the chance to help a lot of people who don’t necessarily use the Internet, but who listen to the radio in their cars or in their homes. Thanks to everyone who took the time to Follow ‘Heart to Heart with Anna’ and thanks to all of my wonderful Guests!

Healing a Broken Heart

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Esther, Elvis and me holding my iPad featuring the Brave Little Hearts SA logo.

Over the twenty-one years I’ve been part of the heart community, I have seen many miracles but I haven’t had a chance to do as much as I’d like to help in the healing of a broken heart. Recently, however, something happened that has made me feel euphoric and very blessed to be part of such a tight knit community that has members willing to make a miracle happen.

In August 2015 I received a letter from a mother (Esther) who told me that she found me on the Internet and that she was a single mother of an only child (Elvis) and that he really needed open-heart surgery. I’ve received letters like this over the years but most of the letters were requests for financial donations. This mother told me that she needed help. She didn’t ask for money; she asked for help. In addition to that, she sent me scanned in copies of her son’s letter from his cardiologist stating what his heart condition was and that he needed surgery as soon as possible.

I had connected with two dads online who were from Africa and who had started nonprofit organizations. I immediately contacted these two dads and to my surprise, within 24 hours one of the dads told me that he had found a surgeon willing to do the surgery! I thought that would be the end of the situation, but it wasn’t. That offer fell through which I found out about when I wrote to Esther to ask how the surgery had gone. I immediately reached out to the two fathers again to see what had happened and what we could do to help the child.

Fareed Matthews of Brave Little Hearts SA was persistent. He continued reaching out to many other organizations hoping to find a surgeon to help Elvis. By November Fareed had found someone in India but the problem was getting the mother and child to the facility. Fareed continued undaunted and found someone in Turkey and Israel but there were complications with both of those situations, too. Then in January 2016 Esther replied to a note I had written to her to inform me that Elvis would have surgery in January in Texas! I couldn’t believe it!

Last week I drove to Dallas to meet Esther and Elvis. I was pinching myself. I couldn’t believe that in 5 months’ time I went from communicating with a complete stranger in Africa to actually driving to meet that woman — who now felt more like a friend than a stranger.

I cannot thank Fareed Matthews and HeartGift enough for their dedication to people like Elvis. This little boy has a new lease on life. His broken heart is now mended. He spent only one day in the ICU and is expected to be released from the hospital soon. It’s just amazing to me what loving, caring and concerned individuals can do to mend a broken heart.

Fareed told me that he had written to 18 organizations in 9 countries across 4 continents before Elvis’ help was finally secured. Fareed’s daughter was born with a number of critical congenital heart defects and she is the angel who has inspired him to help others born with broken hearts. I feel blessed for the contact I’ve had with everyone involved in this miracle.

How Do I Find My Guests?

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Image courtesy of stockimages at FreeDigitalPhotos.net

Finding Guests for “Heart to Heart with Anna” has been interesting. When I first pitched my idea for the show, I had a lot of heart friends in mind as Guests to be on the show. Some of those friends happily came on the show — some more than once! Even though I’ve been in the ‘heart world’ for over 20 years, I don’t know everyone in the heart community so I’ve had people come on the show who I never knew before.

I created a form on the website under the Show tab that people can fill out to be on the show. It’s been delightful to actually “meet” and interview “Heart to Heart with Anna” fans. I read all of the mail I receive and if someone’s idea for a show topic fits with our theme, then I’ll contact that person.

Another way I get Guests is from the reading I do. I spend quite a bit of time on Facebook and if I see someone post something interesting, I will often ask if they’d like to share their story on the radio show. That has been a great way to get to know people better and for them to get their message out.

Doing research for the many projects I’m working on is another way I find Guests. When I read articles that impress me, I will often write to the authors to see if they’d like to come on the show. This has been another great way for me to “meet” others in the heart community and for us to empower our community.

The last way I find Guests for the show is by word-of-mouth. I love it when someone contacts me and says that they know someone who would be perfect for “Heart to Heart with Anna.” So far, everyone who has recommended a Guest for the show has been spot on! I’m so happy we have this radio show to encourage, inspire and educate our heart community. Keep those request forms and referrals coming!

There is only one show left to tape for Season 6 — Carpe Diem: Seizing the Day. We’ll take a week off to prepare for Season 7 — Congenital Heart Defects Around the Globe. If you would like to be a Guest and you live outside the USA or you had your surgeries outside the USA, please let us know!

Thanks to all of the wonderful Guests who have come on the show (sometimes more than once!). You all make the show fun and interesting. I’m looking forward to seeing who will be a Guest next season.

 

 

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.

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