Regional CHD Forum

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!

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3 Responses to “Regional CHD Forum”

  1. Jan Says:

    Good Luck !!

  2. Unlimited Forum Says:

    Hmm…. sick kid is one big problem in my household. Too hard to be a good parent

  3. Sherrie Says:

    Thank you so much for posting the text of your speech and the other goings-on from Tally. I’m about a 5 hour drive away, and my husband (the driver in the house) was out of town this weekend so there was no way that I could attend, but your notes were almost like being there. My son knows the triplets that you met with TOF, they go to summer camp with him. (I would imagine that there aren’t TWO sets of triplets with TOF…chances are that you met the Massey boys.) Safe travels on your return from Tally!

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