Posts Tagged ‘Emory’

Got what you need?

November 2, 2010

They had two walking routes at the Atlanta Heart Walk: a 6 Kilometer (3.7 mile) route and a 1 mile “Survivor’s Walk”. Several times, one of the other Adult CHDers stated that she was going on the Survivor’s Walk. Then suddenly she was looking for Dr. McConnell. “What would you think if I tried the long walk?”

“Do you feel up to it?” he asked.

She nodded. “I’ll do the three and a half mile walk if you’ll walk it with me.”

“I’m game,” Dr. McConnell said, and they moved off to the area where people were gathering for the longer walk.

I left not long after the walkers started – it was cold, and I am Cyanotic. A couple of my friends had the telltale blue tinge, and I am sure I resembled a grape! With me changing colors and shivering in my shoes, and 60% of the attendees out on the Walk, it seemed the perfect time to take off. But I had to laugh at the “preparations” we make before going on a 3.5 mile hike:

Got your water bottle? Check!

Wearing comfortable shoes? Check!

Got your Cardiologist? CHECK!

Epilogue: The walk went really well, and no one – Heart Warrior or doctor – suffered any ill effects!

2010 Atlanta Heart Walk: The big kids!

October 31, 2010

Here’s a few of the Adults with Congenital Heart Defects at the 2010 Atlanta Heart Walk! All of us are patients at Emory University Hospital’s Adult Congenital Cardiology program! (Add one to the total – I’m holding the camera!)

And these are only a few – I filmed this not long after the event officially started and things began to pick up. I think that in total, 30 to 40 Adult CHDer’s were there! An entire group came storming in together (reminded me of the US Calvary coming to the rescue!) and I quickly lost count.

Just in case…

August 26, 2010

I was very pleased – to say the least! – about my exam at the Emory Adult Congenital Heart Center yesterday. An Echocardiogram showed that my Left Ventricle is 6 Millimeters smaller than the original Echo done there in 2002. It was 82 Millimeters across in 2002; it is now 76. And in my case, a shrinking heart is a 100% Official Certified GOOD THING!

If there is trouble in the future, if my PulseOx numbers were to start dropping and I was feeling worn out all the time, there are a few options that we could try to help get me back on an even keel. A couple of them are invasive but do not involve heart surgery… surgery can be a risky (and quite possibly fatal) proposition for me.

First things first, remember that 1) I am not a doctor; I’m just trying to explain it to you as it was explained to me. 2) This applies only to my heart and my health situation. Every heart defect is different, and what works for me may not be such a good thing for you… and vice versa.

The general plan for me would be to increase the blood oxygenation… but when you do that, the heart is naturally going to work harder. The trick is to find a happy balance between a decently high PulseOx and the amount of work that the heart can do. Right now my PulseOx is in the low 80% range and I have that happy balance.

The first option I would have (and all this is way in the future, if at all!) is based on my unusual anatomy. Like many reading, I have the Glenn Shunt. But mine was done in 1967, and is a completely different operation. Let’s review the difference:

The Bi-directional Glenn Shunt, the operation usually performed today: The Superior Vena Cava is cut where it joins the heart and is sewn into the Pulmonary Artery. They usually try to sew it as close to the T formed by the Pulmonary Artery to deliver an equal amount of blood to both lungs.

The Classic Glenn Shunt, performed on me in 1967: The Superior Vena Cava stays where it is. Instead of being cut, it is sewn closed. The right branch of the Pulmonary Artery is cut and sewn into the side of the Superior Vena Cava, which means that all of the blood from the Superior Vena Cava is sent into the right lung.

Now in my case, the Vena Cava wasn’t sewn completely closed. I don’t know if that was an error or if a small opening was left to relieve pressure that got too high, but a small amount of blood gets through the chokepoint and into the Right Atrium. If I were to start having problems they could use a Catheter to plug that small hole. That would cause my PulseOx to climb but shouldn’t increase the heart’s workload too much, and would probably be my best option.

The second thing they could do would be to create a fistula in my right arm. Basically, they would “short-circuit” the circulatory system by connecting an artery directly to a vein. My blood would head down my right arm as usual, but would “turn around” and head back toward the heart before it normally would. (Don’t worry,there are lots of of arterial branches and veins…. my arm wouldn’t rot and fall off!) That would increase the PulseOx numbers… but would also increase the heart’s work load. It is probably my second best option.

The third option would be a combination of medications that could reduce the natural resistance inside my body. Part of the heart’s work comes from how far the blood travels – if you could take all of the blood vessels out of an average human child and place them end to end, you’d have about 60,000 miles of blood vessels! Part of the heart’s work is because of resistance – your blood also has to turn corners and flow through organs (“Scuse me! Comin’ through!”). The medication would “grease” my blood vessels and make the blood flow through them easier. This would cause my PulseOx to rise… but not as much as any other option. My heart would also work harder. With more effort but not as many benefits, this is my third and least attractive option.

But getting a good report now gives me something better than all three of these possibilities: time. Nothing has to be done now, nor for the foreseeable future. And if I do reach the point where something needs to be done, delaying it now means that another option  could be developed that might be even better than the three ideas currently on the table.

All part of the master plan to keep pushing that final day back!

UPDATE: See Heather’s comment below for a good laugh! 🙂  Thanks, Heather!

Swine Flu Update: October 10

October 9, 2009

The H1N1 Swine Flu Vaccine is starting to be distributed nationwide, and just in time, it seems. Pregnant women have been hit especially hard by this bug and they are one of the priority groups that the Centers for Disease Control (CDC) recommends receive the vaccine as soon as possible. Children are also being hit hard – 19 have died this week.

Do you have the Swine Flu? Microsoft and Emory University have teamed up to create an online Flu Quiz – answer a series of questions, and your computer will compare your answers to a list of known symptoms and then inform you of the possibility that you have the flu. I answered the questions last night and the computerized doctor told me I was OK! But if someone in your home does have the Flu, here is the CDC’s informational guide for taking care of them while hopefully avoiding catching it yourself.  (If you live with someone who has the Flu and you are in a high risk group, you need to stay six feet away from the patient. Sounds like a good time to hire a Home Health Nurse.)

There have been questions raised about the safety of the vaccine, and here is the CDC’s web page addressing those issues. Also, there has been no link shown between vaccine and Autism. There was a research report from England published 10 years ago that seemingly linked the Mumps, Measles, and Rubella (MMR) vaccine with increased occurrences of Autism; but further research call those results into question. Most of the authors of that original research have since said that their research didn’t seem to hold up.

I can’t speak for anyone else, but I have taken the vaccinations that have been recommended to me over the years, and there have been no side effects other than occasional soreness at the injection site. And with my heart defect, I feel that I would have been more suceptable to any adverse reaction.

Swine Flu Update: September 8

September 8, 2009

We can be pretty stupid at times.

The Centers for Disease Control H1N1 Flu website states, “Influenza is thought to spread mainly person-to-person through coughing or sneezing of infected people.” Yet where will a good number of Americans be this fall? Here, or someplace similar.

Don’t fool yourself, this isn’t a healthy place to be. Washington State University has 2,000 students down with H1N1. Emory University has 50 students sick; they have re-opened a closed dorm and reassigning sick students there until they feel better. They are getting delivered meals, Tamiflu twice a day, and not allowed to go to class. Washington State has no Quarantine procedure in place… so the Swine Flu may be three seats to your left at the football game next Saturday.

Communicable diseases like the flu love crowds. The United States Department of Defense plans to inoculate the entire military and airlines are hiding the pillows and blankets they usually distribute to customers. The last time I flew, First Class passengers found a shrink wrapped blanket waiting in their seat. Those of us in the back of the cabin had to make do with four inches less legroom and only one package of pretzels.

I’m going to be getting my flu shots this fall, that’s for certain. And I think I’ll watch all of my football on TV!

The 50,000 mile tune up!

August 27, 2009

Things went great at my Adult Congenital Heart Defect examination at Emory University Hospital in Atlanta – they were very through. Pacemaker check, Echocardiogram, bloodwork, finger stick to check my anticoagulation (bloodthinner) level, and the Cardiology exam. Five different doctors were in the room with me, discussing my health at one point!

I’m doing well, my Cardiovascular system is “balanced.” The Echocardiogram shows no major changes from my last one – nothing different or alarming. My Mitral Valve has a small leak and my liver is slightly swollen; but I’ve had both of those problems for years. That’s pretty much my version of normal; the Cardiologist I’ve seen for 21 years didn’t even raise an eyebrow. The only “bad news” I got was that my pacemaker battery would probably need to be replaced in 16 to 21 months.

So I guess you’re just going to have to get used to having me around – I’m not going anywhere!

Hey, I know that guy!

February 26, 2009

Dr. Jennifer Shu, who appears on XM Radio‘s Reach MD, has an interview with Dr. Mike McConnell. Dr. McConnell is co-director of the Adult Congenital Heart Disease clinic at Sibley Heart Center in Atlanta and Associate Professor of Pediatrics and Medicine at Emory University School of Medicine. He’s also on the Adult Congenital Heart Association‘s (ACHA) Medical Advisory Board. AND…he’s the Funky Heart’s cardiologist!

I’ve been his patient forever, it seems, and always seek him out when I’m in the middle of a health crisis. (I keep my regular “Nothing unusual is going on” appointments, too! That’s one of the most important parts of good medical care: routine monitoring and examinations.)

Dr. McConnell and Dr. Shu discuss transitioning a Pediatric cardiac patient to Adult care. The broadcast schedule (and a link to the podcast) can be found here.

Not on MY life!!!

October 9, 2008

This is unreal.

My hospital is not going to be doing the prothrombin test anymore: That’s the test of the Warfarin level in my blood that gives me my INR number. And it isn’t really their fault — their accreditation agency told them to stop offering the test. Apparently, if your Hemocrit is above 55%, they have to hand-calculate the results to determine the correct INR. The hand calculation means they can not guarantee the accuracy of the results, and so they ordered the hospital lab not to offer that test anymore.

I’m not mad at the lab techs. They are some of the nicest people I’ve met, and always bend over backwards to help me out or to hurry up the process if I ever need a test rushed. And they can still do the CBC test for me. But I’d really like to talk to someone from the accreditation agency. if you aren’t offering this test to people with a Hemocrit over 55%, what about the patients in the hospital? And if you suddenly can’t speak for the accuracy of the results, then what about all my previous results? I’ve had that test done once a month for SIX YEARS; are those results suddenly no good?

But like I said, I’m not mad at the hospital lab. I’m not mad at the accreditation agency, though if I sat down and asked them some questions, I’d probably be steaming before we were through. You are about to meet the people I am really mad at.

Before I even knew there was a problem, my doctors and nurses in Atlanta learned about it and were trying to work out the problem. One of my Nurses Googled my area and found this group of doctors, who have an office about half a mile from the hospital. She called them, explained the situation, and asked if they would be willing to do the prothrombin test for me.

Now don’t let the fancy name fool you. They aren’t a state agency, what they are is a group of 24 cardiologists who, along with their Nurses and Nurse Practitioners, work at five offices spread throughout the middle part of the state.  So my Nurse asks if they are set up to do a prothrombin test on a patient with a Hemocrit above 55%.

Certainly! came the answer.

Can you do it for a local patient of ours, and forward the results?

Absolutely not.

Before they will do a lab test for me, I would have to transfer all of my cardiac care to them. Look down their list of doctors — there is not a Pediatric Cardiologist in the entire group, much less an Adult Congenital Heart Specialist. But they are arrogant enough to demand that I leave the doctors and nurses that I trust, and who specialize in care for my heart, before they would stick a needle in my arm.

I’ll answer them with the same answer they gave my nurse: Absolutely not.

South Carolina has the highest death rate from heart disease in the country. Heart disease – the problems you have when you age, nasty stuff builds up in your arteries, and you have heart problems because of that. If you have a heart attack followed by a bypass, these are the guys for you. Congenital Heart Defects are pretty consistent throughout the population: 1 in every 125 people have a CHD; slightly more in some areas; slightly less in others. The composition of their staff shows that they are not interested in dealing with Congenital Heart Defects; I guess it just isn’t a “growth industry.”

And that is why I am miffed. They have offices in the larger cities, but they also have some offices in smaller areas. It would be the perfect situation for them to hire a Pediatric Cardiologist and move him/her between these smaller offices, providing good health care to sick kids (and adults) in the rural parts of the state. But it seems that they are chasing the dollar bill. Maybe that heart on their sign should be green, not red.