Posts Tagged ‘Philadelphia’

Hearts on Ice

June 17, 2010

I’ve written before that I have had a bout with Endocarditis. That’s when I was introduced to the cooling blanket. Trust me, you don’t wanna meet the cooling blanket.

I had been feeling run down for several days but just couldn’t put my finger on it. It had been really busy lately and I figured I was just tired. It had been go, go go! for several days and my thinking was that my gas tank was just empty. But a quick glance in a mirror scared me – I was a lot bluer that I normally I. And I mean a lot bluer – my entire face seemed to be grey.

Down at the hospital they my temperature was still normal, so they did all the usual blood work. The tests came back funny – something was going on, but they weren’t sure what. So I’d be staying for a little while. It took them almost two days to figure things out, and only after they called in the state’s top Infective Disease doctor. I’ve never been easy to figure out – even he admitted I was “quite a challenge.” But he figured out that I had Endocarditis. And the next night, I spiked a fever.

Fevers (not just for me, but in general) seem to hit at night, I do not know why. The first and best clue that I am getting a fever is I suddenly get cold, and that is what happened this time. They ran some blood work and took my temperature. The temp must have really been something – it seemed everyone took a half step backward when they saw the readout. That’s when the doctor said “Let’s get this young man a cooling blanket.” A moment later the nurse came in with a large blanket and they kicked me out of bed long enough to set it up. It looked liked your standard electric blanket – but they did hook it into a fairly large box they placed at the foot of my bed.

Turned out that a cooling blanket has little tubes in it, and these tubes connect to a circulating pump (the box) that circulates very cold water through it. After they got the cooling blanket going, they turned the air conditioner on wide open and gave me orders not to get out of bed. Ok, I thought, this thing is going to chill me down a little. Just got to tough it out.

The only – and I do mean only – reason they call it a blanket is to fool the patient! It just kept getting colder and colder, and the air conditioner wasn’t helping. I didn’t sleep very much that night, obviously!

Cold has been used medically for quite some time, since lowering the body temperature also slows body functions. Every few years we hear a news story about someone who fell into a frozen lake and was in the cold water for a long time. When they come out it seems there can be no way that they survived. The water’s too cold, they’ve been in there too long, and/or they’ve been submerged. But somehow they are revived! The cold slows down their body systems enough that they can survive.

Here is a link to the April 20, 1953 issue of Life Magazine with an article on what seems to be an early cooling blanket. Young Maryann Ferrante had a Ventricular Septal Defect (VSD) present since birth, but doctors of the time had no good repair options. The Heart/Lung Bypass Machine was a recent invention and not very reliable. The only other option was to cut into the heart where the surgeon thought it might be, find it, and repair it – all the while with blood gushing out of the wound and blocking any view of the VSD. Nothing good could come from that.

So surgeons at Hahnemann University Hospital in Philadelphia came up with another plan. They would use a cooling blanket to chill Maryann down to 76 degrees before the operation. The lower temperature would cause her body to slow down enough to clamp the blood vessels and open up the heart. They would still have to work quickly, but the operative field would be clear enough to find the hole and do the repair. The operation was a success, as the article mentions her follow-up visit to the hospital.

Maryann was put to sleep before she went under the cooling blanket. If I had know what was coming, I would have told my doctors to knock me out, too!

Liberty!

April 20, 2010

Proclaim LIBERTY throughout all the land unto all the Inhabitants thereofInscription on the Liberty Bell

I am at the offices of the Adult Congenital Heart Association (ACHA) helping out during our preparations for Lobby Day 2010. We’ll be here all day, and tomorrow take a passenger train to Washington, DC. Lobby Day is Thursday.

The ACHA offices are located on the third floor, and there are no elevators. Even though I walk every day and do an exercise that involves step walking as fast as possible, I almost couldn’t handle it. Last night during a short tour of the city we visited the Philadelphia Museum of Art. If you don’t recall, this museum is the location of the famous steps from the movie Rocky, and also the location of the Rocky Statue featured in the movie Rocky III.

I’m pretty healthy, in average shape, but with my Congenital Heart Defect (CHD) I couldn’t run the Rocky Steps.

It is appropriate that the ACHA offices are in Philadelphia – the city where freedom began. The city where both our Declaration of Independence and the United States Constitution were signed. Because we are planning the best way to obtain funding for the Congenital Heart Futures Act – something that could set future generations free from the scourge of CHDs.

This fight will not be over in a week. We’ve been fighting Heart Defects for years, and we were only able to add surgical corrections to our arsenal sixty six years ago. One operation which relieved one defect at first – that’s it. Everyone else was still out in the cold. But over time our knowledge grew, and we learned how to stay in the fight longer.

And maybe we’re heading for the day when we know enough to get this disease under control – if we can’t stop it completely, at least learn how to keep it at bay. Because the Congenital Heart Futures Act is our Declaration of Independence –  but just like the document signed here in Philadelphia, we have to work hard to make it mean anything.

We’re going hopping…down Philadelphia way!

April 15, 2010

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!

The ACC… and Philadelphia!

March 14, 2010

No, not the Atlantic Coast Conference! (In that ACC’s Men’s Basketball Tournament, today’s championship game will feature Duke vs. Georgia Tech – a pretty good matchup!) I’m talking about ACC10, the American College of Cardiology’s annual scientific session being held in Atlanta, Georgia.  Atlanta’s not far away and I hoped to be able to actually attend it myself, but neither time nor money are on my side. But I have a couple of friends down there, and I’m keeping an eye on the Congenital Cardiology presentations. If there is anything that looks interesting I’ll pass it along. You can follow along yourself by searching for the #ACC10 hashtag on Twitter!

Also everything has fallen into place and I am off to Philadelphia in April! There aren’t any public appearances scheduled – I’m going the main office of the Adult Congenital Heart Association to help prepare for Lobby Day 2010; then take the train down to DC to actually be a part of Lobby Day myself!

My plan is to liveblog Lobby Day, just like I did last year. There is still time for you to be involved – click the Lobby Day 2010 link for information on registration and the host hotel!

Don’t Hide

June 11, 2009

Duncan Cross has a great post about chronic illness that he’s titled The stupid truth about nearly every disease that young people get. Duncan lists a laundry list of side effects and personal crises that sufferers of that illness could experience. And then he asks the Big Question: which Chronic Illness is this?

There is a correct answer, but that’s not the point. The list can easily apply to nearly every Chronic Illness out there – Heart Defects, Cancer, HIV, and so on. The point, as Duncan says, is “it sucks, but no illness has a monopoly on suck.”

Our worst trait – Duncan has picked up on this also – is our tendency to let our our illness define us. It doesn’t. Granted, we are shaped by our experiences, but in the end many of our experiences are common to just being human. And if we learn to deal with that, we’ll see that we are pretty much like everyone else.

I have a heart defect, and because of it I have a variety of unusual life experiences. But if you strip out everything in my life that is affected by my heart, there is still more than 90% of me left… and that part is boringly normal.  I eat, I sleep, I chase the ladies – occasionally they chase me, but not as often as they should –  and I even get frustrated and yell at the TV when the Atlanta Braves aren’t doing well. (I’ve been yelling a lot lately!) Oh, you do things like that too? It must not be that big of a deal, then.

I had some good luck while I was traveling to Philadelphia for the Adult Congenital Heart Association (ACHA) convention – I had to change planes in Memphis, but my flight was delayed and that would leave me with only ten minutes to change planes. When I pointed that out to the ticket agent, they shifted me to another flight – direct to Philadelphia!  But I arrived ninety minutes early and couldn’t check into the hotel, so I sat down and did a little people watching. I tried to guess who among those who passed by might also be an ACHA member. All my guesses were wrong – we don’t wear signs.

So even though some of us have to live with a different form of normal, we’re more alike than we are different. The goal of living with a heart defect is not to withdraw into our own world, but to live. And that is probably the most important piece of wisdom that I can pass on.

Why your Cardiologist is not my Cardiologist

October 1, 2008

I was at my church’s monthly Senior Citizens Fellowship today. (No, I’m not claiming to be a Senior Citizen; I was there because I’m in the group that prepares the food!) The Worship Service was over and we had moved into the Fellowship Hall for the meal.

In the course of the conversation the fact that next week I have a doctor’s appointment at Emory University Hospital in Atlanta was mentioned. Sitting at the table across from me was a distant relative of mine.

“You got a doctor’s appointment in Atlanta?!?!” he asked, in the same tone of voice you would use if I told you my doctor ran a clinic on the moon. Yes, I answered, I have local doctors but I go to Atlanta for major checkups.

“How often you go down there?”

“Usually every four months, more often if there is a problem.”

He shook his head slowly. “I don’t see why.”

“I need a specialist, and that’s the closest hospital that does what I need.”

Another head shake. “I don’t see why. When I had my heart attack, I had a doctor in Columbia. He did me right. I’ll give you his number if you want it.”

Thanks, but no thanks. Like a lot of people unfamiliar was Congenital Heart Defects, he believes that a heart is a heart is a heart. Despite what the Declaration of Independence states, all hearts are not created equal. Mine is different, and I need a whole different set of doctors.The doctors I need are Adult Congenital Heart Defect (ACHD) doctors. ACHD is not a recognized medical specialty; you can go to medical school to be a Orthopedist or a Proctologist, but not an ACHD Cardiologist.

Most of the original group of ACHD doctors (some of whom are still practicing medicine; the field is that young) started their careers as Pediatric Cardiologists. As time passed and their young patients began to see Adult Cardiologists, some of those patients started coming back to them. The adult Cardiologists seem to be lost, they complained. They didn’t understand a defective heart nearly as well as they understood clogged arteries and cholesterol, and these patients just felt more comfortable and “safer” with their childhood physicians.

Suddenly these doctors had a problem – their patients still had heart defects, but they were showing the usual signs of aging, in certain cases they needed more surgery or new medical procedures, and they were asking questions that Pediatric Cardiologists usually don’t have to answer. Hey doc, if I find the right person and we get married, should we have children? Doctor, can you call the HR department at my work? Because of my heart, they are giving me a hard time about insurance.

All of this was uncharted territory. But a trend quickly developed: this phenomena was happening more often in large urban areas than anywhere else. The reason was numbers: 1 out of every 125 people (0.008 of the population) are born with a heart defect. With the greater population of a city, the more people with a heart defect who are potentially living in the area.

So the first clinics set up to treat Adults with heart defects sprung up in major hospitals in cities. Johns Hopkins in Baltimore, UCLA in Los Angeles,  Philadelphia, and several programs in Boston are prime examples. The major exceptions to the “big city” rule are The Mayo Clinic in Rochester, Minnesota (population 100,000) and Duke Medical Center in Durham, North Carolina. (Population 220,000) – hospitals known for quality care long  before Adult Congenital Cardiac Care became an issue.

So for high quality medical care for my funky heart, I have to travel to a large medical center. I’m glad he was able to help my kin, but that heart doctor in Columbia is not the guy I need.

The Great Eight!

August 5, 2008

The Tricuspid Atresia Club!

This photo was taken May 3, 2008, at the Adult Congenital Heart Association‘s Bi-Annual Convention, held in Philadelphia. As you’ve probably guessed, all eight of us (I’m in the photo, too!) have heart defects. What is so unusual is that we all have the same heart defect. Eight adults, all living proof that Tricuspid Atresia (and heart defects in general) don’t have to hold you back.

Most of the enjoyment of the Convention was the opportunity to get together with people who understand. As I mentioned in an earlier post, almost everyone in attendance had “been there and done that”, and you didn’t have to explain things. For example, if you have a CHD, sometimes you just have a BAD DAY. Nothing is really wrong, you just feel as if your Get Up and Go actually got up and left. You can’t really describe it, other than to say you feel like a car with an almost empty gas tank. Your parents almost understand, since you’re their child and they can read you like a book; your Cardiologist probably understands, since he sees this sort of thing everyday. But to actually hang out with people who have been through the same thing… well, it’s a relief. They know exactly what you’re dealing with. Even though the convention lasted three days, friendships were made that will last a lifetime.

Have you figured out who I am yet? This photo leaves me scratching my head — all of us are survivors, obviously. And the Tricuspid Atresia Ladies are all beautiful. But the guy staning on the right got all the handsome DNA, all I got was a maroon jacket and a silly grin! 🙂