Posts Tagged ‘Tallahassee’

New Photo!

October 4, 2010

The Funky Heart (R) and his Cousin, 2/13/2010 Tallahassee, Florida

Forgive the lateness of this photo. Usually, I forget to bring my camera to an event. Or, I do bring it but I forget to get it out and actually use it!!

They say that the mind is the first thing that goes when you get old….!

Surviving a Congenital Heart Defect

August 11, 2010

Karen Thurston Chavez of Broken Hearts of the Big Bend (a CHD Support Group in Tallahassee, Florida that I have had the honor of speaking to) asked me to contribute an original post to their new blog, Our Families, Our Hearts. Here’s a quick preview; click THIS LINK to be taken over to the BHBB blog to read the entire post:

To live with a heart defect, you have to first make peace with the fact that your defective heart will one day give out.

Doesn’t make sense? Read the rest, it will. And be sure to put Our Families, Our Hearts on your daily reading list; Broken Hearts of the Big Bend is a wonderful support network!




Regional CHD Forum

February 13, 2010

Refresh page often for updates!

I’m here at the Regional Forum on Congenital Heart Defects, put on by Broken Hearts of the Big Bend. Theres no Wi-Fi, I’m conected through Karen’s telephone moden. Thanks for allowing me to use your equipment, Karen!

We’re still gathering, we’ll start soon!

Looks like about 50 to 60 people here and still coming – I’ve met TRIPLETS, each one of them with Tetrology of Fallot! Message board behind the speakers podium is flashing photos of Broken Hearts members and doctors.

Just speaking to Kim Rooks, one of the Co-Directors of Broken Hearts, about how good the attendance is today. Looks like we’re up to 75 and a few more are still coming in. A number of adult survivors are here, also!

One of our doctors was delayed, but has just pulled into the parking garage! Hopefully he will be here in a few moments!

And we’ve started! Karen Chavez is making the opening comments. We even have someone from St. Augustine here.

Doctors are available for a relaxed question and answer session, not a rushed appointment. Also this is part of being part of the larger CHD community.

First speaker, Dr. Jay Fricker, Chief of the Pediatric Cardiology department at the University of Florida College of Medicine.

Dr. Fricker is highlighting the Pediatric Cardiology department. In the old days, it was a top down, everyone has a certain job, “call us if you need us!” program. That has changed – the new way of doing things is that everyone that sees a patient has responsability for his/her care.

Dr. Fricker is showing photos of the staff and faculty – faculty work in heart center and help train younger doctors.

Photo on screen of young child taken immediately post operation. Lots of wires! Next photo is 3 days post op, less wires. Heart center is here to serve you.

Dr. Mark Bleiweis, surgeon is speaking. Has been at UF for five years. Sees changes coming, program growing. Starting to get patients from out if state, discussing children’s facility.

Dr. Randy Bryant electrophysiologist. (heart electrician) Been at UF since 1996. Also has program in Jacksonville, estimates he has driven Jacksonville to gainesvile 500 times since taking job.

Question: Describe typical operation. Bleiweis: No typical operation. For a VSD closure, child comes in in the morning. 3 hour prep time; operation usually takes 3 hours. In hospital appx. 6 days if all goes well. HLHS Operation recovery time can take 3 to 6 weeks.

Discussing Pulmonary Valve replacement in Tetrology of Fallot. When do you replace it? Changes being looked at and researched because there is not a replacement tissue valve that lasts forever. Dr. Bleiweis says he is doing things differntly than he did them a few years ago, and the changes will affect ToF patients 20 years into the future.

QRS wave on EKG can show that heart is enlarging and under strain. Patients who have been patients for a few years – old EKGs compared to current one and a trained eye can “see” the problems with the heart.

What if child has CHD but not diagnosed/treated until later? (Considering adoption from China – child has VSD) VSD is correctable, if repaired usually considered to have a “normal” heart. There can be problems if Pulmonary Pressure is too high, but if not, child should do well.

Pacemaker companies working on “wireless leads” that require no wires. Leads placed and communicate to main pacemaker unit by radio, rather than by wire. Possible in next five to ten years.

Question: What can parents/adult survivors do to help predict problems down the line? Obviously, surveillance is a key. Holter monitors, etc. Families being involved is a big thing. When a parent says “Something isn’t quite right,” a good doctor’s ears perk up!Also, technology – when in heart failure, body begins to collect fluid. New pacemakers can also detect fluid retention, report that as well as heart pace.

Question: Where is Stem Cell research going? Dr. Bleiweis doesn’t want to talk specifics, says he is not a stem cell biologist and would look silly. Shands is working with stem cell doctors for research, just beginning an idea for heart valves grown from stem cells. Another avenue is to introduce stem cells where heart is cut into – could the heart regenerate itself?

Dr. Fricker says that in the future, adult cardiologists are going to need to know more about adult congenital problems! UF is currently doing 30-35% Adult Congenital work.

HLHS kids – what is the outlook for a complication after the 3rd surgery?  Most 4th HLHS surgeries are Fontan revision, or transplantation.

Question Symptoms/treatment of dialation of the Aortic root? Usually no symptoms, can live with it a long time if it happens slowly. There are operations that preserve the Aortic Valve, or replace both the valve and the root at once.

Session ends, but doctors are still here and available for questioning. 10 minute break!

Next speaker is Linda Young, PhD. Her subject is balancing your life. Stress is a normal thing; it can be either productive or destructive. It can be acute (sudden, overwhelming) or chronic (day to day stress) but it can be managed. People react differently to stress, usually leads to “fight or flight response”. Your heart rate increases, muscles flex, but also your digestive system turns itself off and your brain turns off some function. Brain is reduced to ability to make one decision (fight or run).

Stress can lead to fear, anger, terror, being irritable, feeling helpless. A sign of stressis questioning your value system, getting mad at God, becoming cynical.

Got to find a good balance – the ability to accomplish what is important to you.

In order to take care of others you have to learn to take care of yourself. What do you do for yourself? Do you spend time with those you love?

Whene you are in balance, you feel good about yourself, happy at work, have energy. When you are out of balance, you can’t relax, can’t make decisions, drink/eat too much, get annoyed with others.

To get yourself together, eat correctly, exercise, RELAX, deep breathe every day, and turn off the TV! (Recent research shows that TV actually depresses brain waves!)

Resilience – positively adapting in the face of adversity. “Bouncing back” after a crisis. To build Resilience, build a support network. Don’t let a crisis overwhelm you. ( Can be difficult with a sick child.) Realize that change is a part of living. Keep moving toward your own goals, not other goals. Learn about yourself, and keep a positive view of yourself. Make sure all things stay in perspective. Be hopeful, and remember to take care of yourself!

The caregiver’s burden – other’s needs are more important than their own! Believe it is selfish to take time for yourself; believe that others will judge or critisize you if you take time for you.

You need to release the burden of guilt – you need to be selfish, take time and take care of yourself. You have just as much right to your feelings as anyone else!

End of Session! We’re getting a little lunch and then my presentation.

Sorry! Got knocked off the internet for a while. I’ll post the text of my presentation as soon as I can.

Program change: A couple of the doctors have had to leave, so we’re going to have a “parent’s panel” – and include Dr Fricker. Dr. Fricker says he has been more impressed with the parents who have spoken today than he has been with the doctors.

One parent knew about child’s heart problem beforehand – the rest didn’t. Received fetal echocardiogram because local doctors heard “funny heartbeat”. Parent who did know says it was to an advantage because they knew what to expect, had child at Shands rather than at a hospital that had little experience.

2nd person who did not know to expect child with heart problems speaking of watching her child being placed in a helicopter and disappearing. Nurses kept her informed.

3rd mom has child with HLHS. Born at 4:30 AM, Transferred to Shands, doctor told her child had 2 chambered heart. Parent wasn’t even sure how many chambers you are supposed to have. Child made it through the 3 surgery procedure but got sick again at 15. Eventually needed a heart transplant. Feels they really have a team at Shands, not just a group of doctors.

Father of patient who had defect, but did not need surgery initially later had VSD repaired. Eventually had a double switch operation.

Parent says that it is hard to let go of child like a normal child, because see child as a “sick kid” and living for the moment. difficult to prepare child for life, because it is natural to want to protect child.

Parent says that Shands has become like a refuge. Something goes wrong, he wants to go to Shands. Comfortable feeling there.

Parent and Dr Fricker talking about patient who had developed cardiomyopathy. Baseball player, developed an earache. Doctor noticed irregular heartbeat, sent to Shands. Got ICD, life got back to normal. Went well for a while, started losing a lot of weight. Doctors started talking about transplant. Got heart ten weeks ago today! (February 12) Has gained 25 pounds, grown two inches!

And this concludes the Regional CHD Forum!

Taking Tallahassee by storm!

February 9, 2010

I am really looking forward to the Regional CHD Forum sponsored by Broken Hearts of the Big Bend. We’ll be at Sittig Hall in downtown Tallahassee – not very far from the State Capitol building!

Just like at Lobby Day and the Duke CHD Symposium, I plan to liveblog the event. Check Adventures of a Funky Heart! around 8:30 AM Eastern Time Saturday morning; If you see a new post, I’m hooked in to the Wi-Fi and I’m blogging! I’ll add information pretty often. Just keep refreshing the page, and you can keep up with events LIVE!

And if there’s no Wi-Fi available, check the blog that night. I’ll be keeping notes and will type up a post later. I’ll also post the text of my presentation after I present it. (Wha..? You expect me to blog AND speak at the same time? I’m not that good!)

I also have a little surprise for you –

there might…

possibly….

with a little luck….

be some VIDEO!

Video depends on if the unit actually does what the manual says it will do, so it’s still up in the air!

The Forum is going to be a lot of fun… and if you live in the area and fight CHD, the organizers would love to have you join their team! So if you like what you see, check them out!

Fighting On

January 3, 2010

Do not go gentle into that good night. Rage, rage against the dying of the light. – Dylan Thomas

“Florida Eliza” – or more correctly, Eliza Huff – now has a Memorial Page at the Broken Hearts of the Big Bend website and her obituary is online. I call her “Florida Eliza” because I know two young women named Eliza who have a Congenital Heart Defect (CHD). I had written an article for Funky Heart! about one just before I heard about the other, so I usually called Eliza Huff “Florida Eliza” to avoid any confusion.

Both young women have a heart defect, but in no way are they “victims.” One jogs every week and participates in a 10K road race, and before relocating to another area, served as a leader in her hometown’s CHD community. The other lost her battle but she didn’t go down easy; her heart arrested fifteen times but she battled back.

FIFTEEN TIMES. And they say that women are the weaker sex. That ain’t ‘actly true, is it?

And this is the reason why pooling our knowledge is so important. We need high level research forums for doctors to share data on the latest drugs, technology, and surgical techniques. And we also need  CHD Forums like the one sponsored by Broken Hearts of the Big Bend. So that those of us “on the front lines”, who live with a CHD or with a child who has a bad heart, can learn from each other.

So we can put an end to Heart Defects.

Special People, Special Moments

December 17, 2009

Check out the newest edition of Patients for a Moment, the blog carnival by and about the folks who aren’t carrying a stethoscope!

As soon as Christmas is over, I’ll turn my full attention to preparing for the Regional Congenital Heart Defect (CHD) Forum sponsored by Broken Hearts of the Big Bend.  The forum is going to be held in Tallahassee, Florida, on February 13, 2010. I’ll get to meet with a group of Cardiac Kids, some Heart Warriors, and most importantly, a lot of Heart Moms and Heart Dads.

Heart Moms and Heart Dads are a special breed of people. Things were going wonderfully, then suddenly a doctor took them aside and said “We think there might be a problem with your child’s heart…” and everything changed. The ground began to crumble under their feet, and all their dreams suddenly became a nightmare. Something is wrong with our baby, and for all anyone knows, it just… happened. Nothing we could have done to stop it or prevent it.

Some families crack under the pressure. Now you have a sick child and a broken family; a double tragedy. And in some families…

… in some families, the parents-to-be come closer together. Mom’s maternal instinct kicks into warp drive; she’s going to protect her child with every weapon she has. She’ll ask questions until the doctor screams for mercy and dispute any advice that doesn’t seem right. The quiet, unassuming woman you married will get in the face of anyone who doesn’t seem to be acting in her child’s best interest. Heart Moms develop iron wills – they will go to the ends of the earth for their child, and if that’s not far enough they’ll tie a rope and drag the earth with them.

A dad’s job is to protect and to care for his family. A Heart Dad realizes that through no fault of his own, he has failed that task. He also realizes that he can’t fix this problem – yes, that is part of his job, but for most of us, precision cardiac surgery is not something we know how to do.

So a Heart Dad accepts the fact that he has to find someone else to do his job for him – and men (especially fathers) don’t do that very well. But Heart Dads put their pride on hold and dedicate themselves to one task: getting their child safely to the help that they need. Maybe it’s not such a “manly” thing to do to ask for help, but they do it. And then our couple learns all about how time moves slowly in a waiting room, how the battle is fought day by day (and sometimes hour by hour) and that sometimes the good guys don’t win.

I love people like that, and I love meeting them. Because as hard as they’ve fought, there is still a seed of doubt in their minds: Will my child make it? What kind of life is he going to have? What’s going to happen to them when I am gone? Most of the Heart Parents I have met are young – in their 30’s, at most. They’re still learning, and things may be OK right now, but they’ll be fighting this battle all their lives.

I don’t claim to be an “inspirational speaker” and I am learning right along with everyone else at the CHD conferences I’ve attended. But maybe I can say something – or just introduce myself as a 43-year-old CHD survivor – and it will all fall into place. With good medical care and a little good fortune, your child can grow up and live a normal life.

I was sitting in my pediatric cardiologist’s office – trying to fit into one of those little chairs – when the man sitting next to me said “So… I guess you’re just here to pick up a prescription for your child?” Without really thinking about it I said “No, I’m the patient; just waiting for my appointment.” And I literally saw his face change as all his dreams about his child were reborn.

Moments like that are awesome.

Seminole wind!

November 30, 2009

So blow, blow Seminole wind,
Blow like you’re never gonna blow again.
Take me down to the Big Bend
To meet some new Heart Friends.

That’s where I’m headed – I’m going to be a part of Broken Hearts of the Big Bend‘s Regional Forum on Congenital Heart Defects! It is going to be held in Tallahassee, Florida, on February 13, 2010. The event begins at 8:30 AM at Sittig Hall in downtown Tallahassee. You can get more information and register for the Forum by clicking HERE.

Two of the top Pediatric Cardiologists will be in attendance – Dr. Mark Bleiweis, the director of the UF Congenital Heart Center and chief pediatric Congenital Surgeon; and Dr. Jay Fricker, who is the head of Pediatric Cardiology for the University of Florida College of Medicine. I’ll have my laptop and hope to be liveblogging the forum; but if that isn’t possible I’l have a notebook and pencil and blog about the event later. (I hope there is Wi-Fi, it’s much better when it is live and in color!) Dr. Fricker and Dr. Bleiweis will participate in a panel discussion, and later on experts will show us how to advocate for your child at school, in the doctor’s office, and in the hospital. I’ll be on a panel of Adult CHD Survivors scheduled for after lunch, and possibly even speaking to the group.

The event is FREE but they do ask that you register, probably so they will have a good count for the Happy Hearts Reunion, a gathering of CHDers that will follow the event. You can register by clicking the link on the information page.

It promises to be both fun and informative, and you’ll get to meet other heart families who are fighting the same battle that you are.

Hope to see you there!