Category Archives: adult congenital heart defect survivor

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 Father’s Day from “Heart to Heart with Anna”!

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Image courtesy of bugtiger at FreeDigitalPhotos.net 

I came to appreciate fathers in a whole new way when I began working on the book The Heart of a Father. That book is a compilation of essays by 50 men from around the world. Most of the men are fathers of children born with congenital heart defects. Some of the men are adult survivors of congenital heart defects. We even had a chapter by grandfathers of children with congenital heart defects. The Heart of a Father is the companion to The Heart of a MotherThe Heart of a Father was published 10 years after the mothers’ book and we discover what happened to some of the families we learned to love when the husbands shared their own stories.

The men had a different story to share. Their stories focused on different themes than the mothers’ essays did. The fathers talked about how having a child with a heart defect affected their marriages, their faith and how some of them felt stuck in a Catch 22 situation. The essays were touching, loving and brutally honest. They made me feel their anguish, their pride and their quandaries. I left feeling like I better understood what men feel like when their worlds fall apart because they’ve been told their children could die from their heart defects, or worse — because their children have died due to their heart defects. The mothers’ book had one chapter devoted to losing a child; 10 years later the dads needed two chapters — one called Shooting Stars for the essays of the babies lost too soon and another chapter called Short Journeys for essays by contributors sharing the lives of adult loved ones taken too soon.

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Many of us enjoy buying something special for our fathers during this time of year. I know that it means as much, if not more, for children to make something, write a card or letter or, better yet — to get together to spend time with their fathers. If you would like to find something special for your dad, you can help out Hearts Unite the Globe and the “Heart to Heart with Anna” radio show by shopping using the AmazonSmile program. If you go to http://smile.amazon.com/ch/46-4352863 before you shop at Amazon, then 1/2 of 1% of qualifying purchases will be sent to Hearts Unite the Globe. This will allow us to continue free programming for the congenital heart defect community. Our programs feature dads, moms, survivors, nurses, siblings, doctors and many others in the heart community. This year, I hope you’ll pay special tribute to the remarkable men in your life. I know I will.

 

 

Tribute to a Heart Dad

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Lauren and Frank Celeskey

Today’s radio show is a tribute to Frank Celeskey. He came on the radio show back in Season 3 when the theme was Finding Your Voice and Frank was terrific about sharing his concerns and what it was like for him to watch Lauren grow up.

The title of the show Frank Celeskey was on was called “Parenting Changes: When Your CHD Warrior Becomes an Adult” and it was interesting to hear him and Alysanne Crymes discuss the changes they’ve endured watching their children — both born with critical congenital heart defects requiring surgery in infancy — grow up. Like many heart warriors, their children didn’t only have their heart defects to contend with, but other medical conditions as well. I enjoyed hearing Alysanne and Frank talk about how they dealt with that situation.

Lauren and her brother have started a GoFundMe page to help their mother with expenses for their younger brother. This death was totally unexpected and no financial arrangements had been made to take care of his son, who will be a senior in high school next year. Lauren and her older brother are doing what they can, as is their hardworking single mom, but any help from the heart community would be greatly appreciated.

Next week we’ll begin Season 8 of Heart to Heart with Anna. The theme for Season 8 is: Care for Adults with Congenital Heart Defects and we have a terrific line up of shows that we are so excited about! Please tune in to hear Frank’s show, if you haven’t done so already and be prepared for next week’s brand new episode!

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

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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