Category Archives: heart defect survivor

Tribute to a Heart Dad

Lauren&Frank

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.

Footprints in the sand

Image courtesy of zole4 at FreeDigitalPhotos.net

Healing a Broken Heart

Esther,Elvis,Anna,BraveLittleHearts

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.

Season 3 Line-Up of Shows

MagnifyingGlass

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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