Exhausted

By now you have heard or read of the unusually high number of Congenital Heart Defect (CHD) deaths during the past week. There have been at least six (some have stated that at least ten have passed, but I personally know of six. I’m not certain of the others.)

I’ve become e-mail friends with Joshua’s mom. Joshua was born August 16, 2010 and departed October 6. His mother was by his side practically the entire time, but what’s more, Joshua was never stable enough to travel. He never saw the world outside of the hospital.

52 days of hospitalization, two major heart operations…. the costs are going to be enormous. Joshua’s family is certainly physically exhausted, and before all is said and done they’re going to be fiscally exhausted.

When I was in the Intensive Care Unit after my first surgery in 1967, the cost was $66 per day. After I had a stroke in 2002, Intensive Care was $2200 per day. Note that in both cases the price quoted is basically a “rental fee”. It pays for the right to lay in the ICU bed for 24 hours. It does not include the cost of seeing a doctor, specialized nursing staff, drugs, or monitoring devices. I’ve stayed in hotels that cost $66 per night, but I have never stayed in a $2200 per night hotel. I doubt that I ever will.

The “average” Congenital Heart Surgery and hospitalization could easily cost $100,000. Where is a young family supposed to get that kind of money?

Cheer Up!

It’s been a rough week for those of us with a Congenital Heart Defect, and things have been pretty gloomy here at Funky Heart Central. But a few days ago a friend took a photo and added some text. After it was printed, she and her husband signed it, slipped it into an envelope, and mailed it to me. It arrived today and things are beginning to look brighter! (Click Photo to Enlarge!)

Thank you, Amanda and Jim!!

 

Denver Congenital Heart Walk 2010

 

Saving Grace

To the tune of Saving Grace by Everlast:

Two days ago she gave birth
Momma’s little girl fighting for all she’s worth
Don’t say her child isn’t perfect

So pretty & oh so bold
Got a heart full of gold but her hands are so cold
She said “I don’t even think that God can save her.”

Are we gaining ground
Am I losing faith
Doc can you help save my little girl Grace
I’m so thankful for this gift my Angels gave me

Don’t wanna leave
Won’t go home
Worried her child will be so alone
Just waitin’ for a miracle

Street wise from the boulevard
Jesus only knows that she tries too hard
She’s only tryin’ to keep the sky from fallin’

Day sixteen in Intensive Care Hell
Day or night she can’t tell
You think she’s strong but she’s just surviving

Operating room like a gambling hall
Walk in and bet it all
Surgeon smiles and says “She’ll make it.”
Throw your hands up and scream hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Amen!

One time around the sun
Another year older and your work ain’t done
It’s time to write the final chapter

Tell your story and tell it true
Tell everyone what your Grace went through
Until this disease is no longer

Then we’ll all scream hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah…. Amen!

Three Ghosts

The Ghost of Heart Defects past….

I am beginning to feel a little better about him now, but he is still on the critical list….He will have to be operated on again, but unless it is a case of having to have the surgery as soon as possible, it should be several years. We have been here a long time and it seems like we have a long time to go. Keep writing when you get a chance because it does us good to get mail from home. (Copied from a letter to my grandparents from my parents, February, 1967)

The Ghost of Heart Defects present….

Things with Isaac’s recovery have gone very well. In April, his cardiologist told us that Isaac was doing great and for the first time he told us that Isaac had “no restrictions”. I couldn’t believe it… I could go on all night raving about how wonderful he is, but the real point of this is to let all of the other heart families out there know that there is hope for your child as well. Isaac only uses 1/2 of his heart since his Fontan and yet no one even knows he is sick. (Copied with permission from the blog of a Heart Mom, July 2010)

The Ghost of Heart Defects yet to come…

It was amazing, Dad. Little Freddy was so blue when he came out. They slapped him on the bottom and he didn’t really cry, he just gasped for breath. They strapped him down to this little board – strapped him down so tight that he couldn’t move – and the first thing they did was jab a needle right into his chest. That made him pretty mad, and it didn’t do me any good either. If that wasn’t bad enough, they followed that up with another injection, and they put Freddy’s umbilical cord in a sterile container and one doctor left the room with it. They told me later that the first injection was stem cells, and they injected them directly into the heart. The next injection was either genes or entire cells, I’m not sure which, but the doctor called it “NRG1″. They say that the stem cells will repair his heart very slowly, and the NRG1 will help speed things up. They say that Freddy is going to need a heart valve, so they took his umbilical cord. They will harvest the stem cells there and build one in the lab for him. And when they replace it, the doctors won’t cut him open – they will put the valve on the end of a little tube, and push that tube through his blood vessels to his heart. Then they will just pop it into place. (E-mail that will hopefully be sent at some time in the future; all of these technologies are being developed today.)

The Politician who studied CHD

Todd Caminish is a Democratic Candidate for the Arizona State Senate.

But in his non-political job, Todd is an Associate Professor at the University of Arizona College of Pharmacy. And right now, he’s part of a team that is studying the connection between Arsenic and Congenital Heart Defects (CHDs). The research is being conducted as part of the University of Arizona’s Superfund Research Program.

But why Superfund? Isn’t that the federal program designed for hazardous substance cleanup? The Superfund programs becomes involved because of Arizona’s mining history. Arizona’s been the home to lots of mining operations throughout the years. Many times, dangerous substances were used to separate the valuable ore from the regular rock. The end of the process resulted in ore that was being mined and the mine tailings – in other words, everything else. All that rock was discarded… and most of it was contaminated.

As a result, there are 350,000 acres of mine tailings in Arizona. A lot of mining companies used Arsenic as part of the separation process, and as a result, a lot of the mine tailings contain dangerous levels of Arsenic.  Some of the chemical seeps into the ground water; while some of it dries to a fine powder that is easily carried on the wind and breathed by anything with a lung.And research is showing that among other things, Arsenic can affect the cellular “triggers” that guide heart development.

Is there a connection? What does the statistics say? Each year, the Arizona Department of Health Services files the Arizona Birth Defects Monitoring Program Report. In the 1996  edition of the Report, (Read it by CLICKING HERE) Arizona reported 133 Cardiac Congenital Anomalies per 10,000 Live Births and Fetal Deaths. (See chart on page 9) How does that compare to the United States national average? According to the March of Dimes, the average number of babies born with a heart defect in the United States is 1 per every 125 births, or 8 in 1000. Arizona’s number works out to 13.3 children affected out of every 1000. The March of Dimes website doesn’t list information concerning CHD Fetal Deaths, but moving from 8 per 1000 to 13.3 per 1000 is a huge jump.Thats 1 CHD Birth per 75 total births, almost as high as the state of Wisconsin.

Bottom Line: Arizona has a Heart Defect problem, and it very well could be caused by the Arsenic left over from old mines.

Father’s Day 2010

I often write about Heart Moms, and how much they stand up for their Cardiac Kid. Mess with their child, and you’ve just unleashed a force you do not want to deal with.

Very few times do we hear about the other half of the equation: the Heart Dads. Heart Dads have to change their entire outlook on life, and it goes against everything that Dads stand for. A good dad wears many hats, but his main job is to protect and defend his family. He provides them with a stable home and makes sure everyone has their daily needs met.  And then the parents learn that their child has a major illness.

“Take care of the family”… how exactly do you fight something like a heart defect? “As best you can,” or “One day at a time,” are the usual answers, but those words don’t help. A Heart Dad may feel like a failure because this is something he can’t solve, a problem he can’t fix. Hitting the wall and shouting “I just don’t know what to do!” won’t help, so men bite it back and keep our frustrations inside. And it eats at us.

You have to trust people who you’ve probably just met with your child’s life, and for a father, that is very hard to do. Take my child away and do surgery? No way. That’s probably why men seem to have so much difficulty in the Surgical Waiting Rooms. Because real men take care of their own problems.

No… a real man understands that as much as he want to fix this problem himself, he can’t do it. So he does the only thing that he can do: he finds someone who can make everything better.

He gives his child a fighting chance.

Happy Father’s Day to the dads of sick kids everywhere

Perspective

I’ve worn my Kryptonian at Heart T-Shirt several times, but I have noticed that it has gotten different reactions from different people. In case you forgot, fellow CHDer Jason saw this shirt at a comic convention and just had to have one. When I saw it, I had to get one too.

The interesting thing about this shirt is the reaction you get. I wore it one day while hanging out with a group of heart-healthy friends.

Kryptonian at Heart

There were a couple of smirks and a little laughter, and one friend asked me “Superman fan, huh?” ( I prefer Batman. With no superpowers, Batman’s primary weapon is his brain. I have one of those, too!)

But I also wore it to an informal reception held just after Lobby Day. This reception took place the night after our Lobby Day effort and was a both a celebration of the day’s events and a preview of Vision 2020. A lot of the attendees were leaving in the morning, so it was also an unofficial good-bye party.

The reaction of my fellow CHDers was amazing. “I need a shirt like that!” More than one person said. Several people asked me where I got it – no problem remembering that; the name of the company is printed on the sleeve. I even got a couple of “threats” to literally peel my shirt off of my body! (At least, I think that they were joking!)

They took a look at Superman’s S shield hiding behind the human ribs and saw what I saw. Although all our stories are slightly different, we’ve all been cut on, knocked down, knocked out, too sick to move, poked, prodded, and connected to just about every monitor that there is, yet somehow we managed to fight back. They saw not a comic book hero, but themselves.

My buddies back home still think I’m a Superman fan. That’s fine, they are great people and I couldn’t make it without their friendship. But the Cardiac Kids and the Heart Warriors that I know see that shirt and they see their own heart – the heart of a true hero.

Five CHD Questions: Where?

Where do Congenital Heart Defect (CHD) Survivors live?

The answer to this question seems to be obvious – everywhere! If the disease does not discriminate about who it strikes (CHD affects 1 an average of every 125 live births in America) then it stands to reason it isn’t very particular about where it strikes, either. But that isn’t always true.

As I have mentioned before, there seems to be an area of Baltimore, Maryland that contains a “cluster” of CHD occurrences, most of them Hypoplastic Left Heart Syndrome (HLHS). And while the national incidence of CHD is 1 in 125 live births; in the state of Wisconsin the average is 1 in 74 live births.

The occurrence of CHDs in mainland China has quadrupled in the past 20 years, from 6.2 CHDs per 10,000 live births to 25.1 Heart Defects per 10,000 live births. They haven’t caught the United States, where the number of CHDs is 80 per 10,000, but China has so many people that approximately 1 million children per year are born with some type of birth defect. China has a growing pollution problem that is probably a major contributor to the number of birth defects that occur in that country.

Back home, an area of primary concern has to be Butte, Montana, home of the Berkeley Pit. The Pit is a former open-pit copper mine that was abandoned in 1982. Since then, water has seeped into the pit and is very toxic. The toxic brew is about a mile deep and can kill birds that stay too long. This area needs monitoring not only for CHDs, but for increased occurrences of all birth defects.

If you read the first link in this post (“an area of Baltimore, Maryland”) you’ll find that the researchers tried to determine exactly what in the area was causing HLHS in the cluster by finding the common thread that linked all of the events together. They found very little commonality. (One or both parents creating painted works of art seemed to be somewhat of a factor, but only in that one area.)

So what does trigger the occurrence of a Congenital Heart Defect? Most experts agree that it is an unknown combination of genetics and environment. But what combination is the proper mix? And what exactly happens to trigger a heart defect?

Answer these questions, and we’re on our way to beating CHDs.

Overheard at Lobby Day

This is a selection of phrases, sayings, quotes, and general conversations I overheard at the Lobby Day activities in Washington DC. “Lobby Day” is a bit of a misnomer, as events began Wednesday night and didn’t conclude until Saturday evening. (Since I wasn’t involved in the Saturday events I was not there.)

Sometimes I knew the person speaking, and sometimes I didn’t. But in either case, I have chosen to protect their privacy.

*

“I cut a photo of Jim Wong out of the newsletter and put it in my wallet. Where ever I go tomorrow, he’s going with me.”

*

“Did you ever think you’d be in a room full of people just like us?”

“No way. I didn’t even know anyone else with a heart defect until college.”

*

“The doctor told me `At my medical school, they taught us that people like you didn’t survive.’ I didn’t know what to say to that. A few moments later he asked `So, have you thought about the medical school you want to attend?’ I told him, `Not the one that you attended.’”

*

“One day people with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

*

“Don’t worry, it’s all going to fall into place tomorrow. We’ve got a good message. And if it doesn’t work, I’ll kick somebody in the knee.”

*

“Let’s win this for everyone who never had the chance to get here.”

*

(To US Capitol Police Officer:) “I have a pacemaker, I’d like a hand search rather than walk through the metal detector.”

“There seems to be an unusual number of people with pacemakers coming through today.”

*

Congressional Staffer: “Why aren’t there enough doctors trained to serve these adults with heart problems?”

Cardiologist: “Because twenty years ago, kids with heart defects usually didn’t live long enough to grow up.”

*

Cardiologist: “I told the Senator `Adults living with Congenital Heart Disease are receiving third world level care, right here in America. This law is the first step in doing something to fix that.’”

*

“Starting an Adult CHD Survellience System may sound strange, but it will help more in the end. We’ve already had the surgeries, taken the medications, and all that. If the people at CDC can gather data on us, analyze it, and figure out what works, and what doesn’t, it’ll save a lot of children from all the trial and error that we had to go through.”

*

“How far do you think you have walked today?”

“I don’t think my pedometer can count that high.”

*

“My feet are killing me. But I wouldn’t trade a moment of this for anything.”

We’re going hopping…down Philadelphia way!

“Live from Studio B of WFIL-TV, located in the heart of Philadelphia, Pennsylvania, this is American Bandstand!”  – 3:30 PM August 5, 1957

The schedule is set! I’ll be in Philadelphia April 19-21, helping the Adult Congenital Heart Association (ACHA) prepare for Lobby Day 2010. I won’t be speaking while in Philadelphia – this will mainly be “behind the scenes” work, setting up the meetings between our attendees and the members of Congress. No liveblogging is scheduled either, but I am planning to post regularly.

Then on April 21 we’ll start the day in Philadelphia, but we’ll ride the train down to Union Station in Washington DC. And Lobby Day is set for Thursday, April 22.  Feel free to surf to Adventures of a Funky Heart! on April 22 and look over my shoulder, so to speak!

The recently passed healthcare bill (known as The Patient Protection and Affordable Care Act) contains some exciting provisions for those of us with Congenital Heart Defects (CHDs). The law creates a Congenital Heart Defect Surveillance System – the CHD Registry that ACHA campaigned for at Lobby Day 2007 – to be maintained by the Centers for Disease Control (CDC). It will also give the Director of the National Institutes of Health (NIH) the authority to “expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease…”

But there is a catch – the programs are authorized, but not funded. So we’ll be heading to Capitol Hill to convince our elected officials to supply the funds. So keep us in your thoughts – this will affect every Congenital Heart Defect (CHD) patient, not just adults. So call or write your Representative, and ask him or her to fund the Congenital Heart Disease provisions of The Patient Protection and Affordable Care Act! (That’s Section 10411, Section 399-V2, and Section 425, should you be asked. )

This will be my third Lobby Day; I attended Lobby Day 2007 and 2009. In 2007 my Cardiologist and I teamed up to visit 12 different Senators and Representatives, all from the Carolinas and Georgia. In 2009 my hernia was acting up so I stayed at our HQ and blogged the event, you can read that account HERE. The blogging was fun and got our message out to the entire world, but I felt a little bit “out of the loop” so I think I am going to try to blog and lobby this year. You may have a “Guest Blogger” for an hour or so while I lobby my Congressman, but I think I have a workable plan. And don’t worry – I’ll leave you in good hands! If I have to use a Guest Blogger I’ll get a Champ, not a chump!

I will also have a small video camera with me! I’m not going to promise anything – you know how electronic gremlins like to crash this type of event – but I hope to get several short interviews during this upcoming week!