Behind Those Doors

Karen Thurston Chavez is Co-Founder of the support group Broken Hearts of the Big Bend (BHBB) and a good friend. We met when I spoke at BHBB’s Congenital Heart Defect Symposium last year and we trade e-mails at least once a week, keeping up with each other and discussing the latest issues affecting the Heart Defect community.

Karen’s blog has a most unusual post you need to read – in September, she was able to shadow her son’s heart surgeon for a day at Shands Children’s Hospital in Gainesville, Florida. But then something she didn’t expect happened:

I figured I would sit in on conferences and consultations he had with families whose children were having, would be having, or just had open-heart surgery to repair their congenital heart defects.  I guessed that I would sit and watch while he handled administrative work. I was right. I did all those things.

I did not think I would step into his operating room.

So I’m sending you over to her blog for today’s post. Karen will help you get scrubbed in and then walk you into the Operating Room as Dr. Mark Bleiweis performs open heart surgery.

SHADOWING MY SON’S HEART SURGEON

New Photo!

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

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!

The Road to Baltimore

“You got how much snow?” I asked.

“About four inches,” my father said. My flight had left South Carolina about 9:00 AM Friday morning; and the snow had begun to fall about 4:00 PM. I called home Saturday morning like I usually do, and my father had told me about the unusual snowfall.

In just a few hours I was scheduled to speak to the members of the Broken Hearts of the Big Bend, and I planned to speak about my first heart operation. And now my dad is telling me about snow on the ground back home.

Deja vu all over again, as Yogi Berra might say. I was getting ready to talk about how my parents drove from South Carolina to Baltimore, fought through the worst snowstorm in recent memory (Baltimore’s 24 hour snowfall total that night has been topped twice since then) to get me to Johns Hopkins Hospital for my first heart surgery. And my father is talking about snow on the ground. If there was ever a sign that I needed to say what I had planned, this was it.

My dad is a retired textile chemist who has worked in cotton mills and fabric manufacturers all his life. He occasionally calls himself a linthead, an old term left over from the days when cotton mills peppered the South Carolina landscape. My mom also worked in textiles, usually on the retail end.  But on one night in early 1967 these two Southerners went above and beyond the call and in the process became Heart Parents.

I won’t tell the story again; I posted the text of my presentation and also a video of my speech earlier. My audience was made up of Heart Parents, most of them young, just like my dad and mom were. They have the advantage of having the internet, overwhelming amounts of information, support groups, and instant communication. My parents were on their own and knew no one else who had ever been through anything like this.

You need a special kind of strength to dig your heels in and fight against Heart Defects. Two lintheads from the cotton mills found theirs on the road to Baltimore… and that same strength is in you.

Funky Heart tells the story of his first surgery

This was taped earlier today at the Regional Forum on Congenital Heart Disease.

Heart Moms and Heart Dads

This is the text of my presentation to the Broken Hearts of the Big Bend Regional Conference on Congenital Heart Defects. (February 13, 2010, Tallahassee, Florida)

My name is Steve Catoe, and I was born in 1966 with a Congenital Heart Defect known as Tricuspid Atresia. If you are not familiar with that defect, Tricuspid Atresia means that my Tricuspid Valve – which is the door connecting the Right Atrium to the Right Ventricle – does not exist. Because of it, my Right Ventricle is very small and almost cut off from the rest of the heart.

I write a blog named “Adventures of a Funky Heart!”, where I write about growing up with a heart defect, the latest in Congenital Heart research, and news about advances in the field. I try to make it interesting and use a little humor, so hopefully you’ll keep coming back and reading every day. Hopefully I can help you by giving you information about heart defects that you can use – and I try to do it a little bit at a time, so you don’t feel like you are trying to drink directly from a fire hose.

Usually when I get a chance to speak to a group I talk about spreading awareness and I talk about our Cardiac Kids and I talk about adults living with a heart defect, who I call Heart Warriors. I’m scheduled to be on the Adult Survivors Panel too, and I plan to be around for the rest of the day, so if you want to talk to me about anything I’ll be here. But I asked for a little bit of extra time to tell you a story.

I was born on a Tuesday, and on Friday, they started to realize that something wasn’t right. I don’t know if my mother noticed it first, but that was probably the way it happened. Moms know their babies, and they are almost always the first one to pick up on any problem.

So they took me to my pediatrician, who figured out that I had some type of heart problem, but he wasn’t sure what. So he sent me to the nearest hospital that could help me.

The doctors there told my parents that I had Tricuspid Atresia, and they should take me home and love me, because I wouldn’t be here that long. Well my parents didn’t think a whole lot of that statement, and neither did my doctor back home. In fact, he said it was completely unacceptable.

So he found four places that could try a surgical repair: Johns Hopkins, Mayo Clinic, the University of Virginia, and the Texas Heart Institute. Mayo and Texas he threw out because of the travel distance. Virginia, which was his own medical school, he eliminated because he didn’t think they had enough experience. That left us with Johns Hopkins. He called, and things were set up for that summer. My parents would take me to Baltimore, I would be evaluated, and if possible, the Hopkins surgeons would attempt the surgery.

That night all hell broke loose. I went into heart failure, my heart rate shot up to 200 beats per minute, and I was rushed to my local hospital. I was there a week while they tried to get me stabilized; in the meantime, my pediatrician was working the phones, relaying information about me to the Hopkins doctors. They were telling him that I needed to get there as soon as possible.

Dad picked me up at the hospital and drove home to pick up momma, and we immediately left for Baltimore. Remember this occurred in 1967; I-95 hadn’t been completed yet. After driving all day they needed a break, so they stopped at a hotel in Petersburg, Virginia.

They had been asleep about an hour when Momma got up to check on me. She happened to glance out the window and it was snowing as hard as she had ever seen it snow. She woke daddy up, and we were back in the car and moving within a few minutes.

Cars were stuck in the snow all along the roadway, and daddy was stopping every fifteen minutes to wipe the windshield off with an old rag. When they passed through Washington he actually thought about putting me and momma on a train to Baltimore and catching up to us later. It’s a good thing he didn’t, because he found out later that the snow was so bad that the railroad shut down their trains for the night.

Three families were expected by the Children’s Medical Center that day, but we were the only ones who made it. The doctors examined me and then asked my parents for permission to do a Catherization. After the Catherization, the head Cardiologist came out to talk to my parents.

“He is down to hours,” he said. “We need to operate right now.” He added that my odds of surviving the operation were 50-50 but without it I had no chance. My parents had about five minutes to discuss it before they had to decide to risk the surgery or just let me slip away.

I was taken into the operating room at 10:30 that night, and the operation ended about three in the morning. My folks didn’t leave the hospital until they saw me afterwards, so it was almost daybreak when they went to a boardinghouse about a block away.

I have to admit that I begged Karen and the organizing committee for a few moments to speak to you today, almost to the point of embarrassing myself. Because that surgery took place on the night of February 17, 1967 – almost 43 years ago. My parents are just ordinary people; but that night they turned into a Heart Mom and a Heart Dad just like you. And I’m here today because they have always been willing to ask one more question, explore one more option, and go one more mile.

So I wanted to take a few moments and tell you my story, encourage you to hang in there no matter what, and on behalf of all the Cardiac Kids and Heart Warriors, to just say Thank You.

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!

Awareness vs. Assistance

Every week is CHD Awareness Week for me. – Fellow Survivor on Twitter

Awareness of Congenital Heart Defects is the focus of the week, but what happens next? Hopefully we can convince mothers to be to give up any bad habit they may have and take better care of themselves, but too often there is no way to predict a Congenital Heart Defect (CHD). Most people feel genetics and environment combine to cause CHDs, but no one knows what the proper mixture is or what triggers them. It is so random that there is really no template – just a number. On average, 1 in 125 children are born with a heart defect.

And that’s when awareness isn’t what’s needed. We already know what a CHD is because the doctor just told us our unborn child has one, now the question in our minds is Oh God, what happens now?

That’s where groups like Broken Hearts of the Big Bend come in. They are the classic support group – folks who have been there before. They’ll be right there, holding your hand. Watching the clock with you during surgery. Another parent will be able to sit down with you and tell you what to expect, because someone in their family has the same type of problem with their heart. They know what it feels like to Walk the Hard Path, because they’ve all gone down that road themselves.

And they hold events like the Regional Forum, too;  so that their members can gather and talk to heart doctors over the course of a day, and not in the rushed environment of the doctor’s appointment. And they ask people like me to speak, because I’ve been there, too – but as a patient. I see things from a little bit different angle, and perhaps I can allow you to stand in my shoes for just a little while.

A support group is not a guarantee – no one can say “Do this, this, this, and the other thing and everything will be fine.” But they can help tip the odds in your favor. And you’ll have an advantage over my generation: we all thought that we were THE ONLY ONE. No support groups, no internet, and no clue that the CHD survivor family was slowly growing, because each one of us was in our own personal little hell. There is no one else like us – what did we do, God?

I hope you have made plans to attend. Because you aren’t alone. I plan to be liveblogging, so even if you don’t live in the Big Bend, just keep checking Adventures of a Funky Heart! on Saturday.

I don’t mind a bit if you look over my shoulder.

Taking Tallahassee by storm!

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!

Special People, Special Moments

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.