Posts Tagged ‘Cardiologist’

On the cutting edge

November 5, 2010

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.

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!

Trouble coming!

September 1, 2010

I love the idea of EchoJournal; if you find something unusual on an echocardiogram you can upload the visuals, and then everyone else can “look over your shoulder”, so to speak. They can learn from you, and you can learn from them. If I were an Echo Tech I think I’d be checking this site out every few days!

For example, take a look at these two links. (HERE and HERE) They are both Echocardiograms of someone’s Left Atrium, and they have a serious problem: It’s huge! In fact the doctor who submitted it notes that this Left Atrium is 6.5 centimeters by 9 centimeters. For a male, the average size of a Left Atrium is about 40 millimeters in diameter.

Holy cow! I hope that person got the underlying problem fixed and that Atrium back down to a smaller size. Having an Atrium blow out is not like having a tire blow, you don’t just pull off the road and change it!

TELL HIM WHAT HE’S WON!

August 30, 2010

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!

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!

GAMECHANGER

July 10, 2010

You won’t see many Saturday editions of Adventures of a Funky Heart! But then again, I don’t find important news like this every day:

…as the American Board of Internal Medicine voted unanimously for the Adult Congenital Heart Disease (ACHD) sub-specialty to be approved for board certification – the American Board of Pediatrics had previously signed-off on the new sub-specialty.

(Emphasis mine)

As I have mentioned before, seeing an Adult Congenital Cardiologist is critical to the care of a person with a Congenital Heart Defect. Adult Cardiologists, for the most part, aren’t very familiar with congenital defects. They are trained to deal with the problems that develop in a healthy heart as a person ages – clogged arteries, Cholesterol problems, and heart attacks. Adult CHDers won’t have those problems – or they will manifest themselves differently than would happen in a “normal” heart. So we need to be seen by an Adult Congenital Cardiologist.

But there are no Adult Congenital Cardiologists – not really. We do have a small group of people who have the experience needed to care for Heart Warriors, but there is nothing on paper. My doctor, for example, is Co-Director of the Adult Congenital Cardiology program at a major hospital…. but his license says he’s a Pediatric Cardiologist. And at one time he was; he just kept following his patients for as long as they needed him, and he’s “grown up” with the rest of us.

Since there are no “official” Adult Congenital Cardiologists, what does the approval for board certification mean? Simply put, there will be licenced, certified, diploma carrying doctors who can care for us in the future. Because now, it is going to be official.

There is going to be training for Adult Congenital Cardiology. (There already is at Mayo Clinic.)

There will be an oversight group.

And there’s going to be a test – a test you have to pass before you can legally claim to be an Adult Congenital Cardiologist. (I am not sure about what the plan is for the people already working in the field, such as my doctor. Usually there will be a way for them to be “grandfathered” in – have a certain amount of experience and pass the test, and you are board certified.)

Things won’t change overnight – Adult Congenital Cardiologists will still be few and far between, at least at first. If we’re getting good care now, it probably won’t pay for us to drop everything and go running off looking for a new doctor. But for the Cardiac Kids who are growing up, there will be more and more doctors able to take care of you after you become an adult. And hopefully along with the new certification program, doctors will work on a transition program. So Pediatric Cardiologists can help their older patients move on to adult oriented care. Because I’ve visited Pediatric Cardiologists before, even when I was in my 30’s. I’ve tried to get my adult body into those tiny chairs – the ones so low that your knees are level with your eyeballs.

It’s a great day – everybody wins. But the people who will benefit the most are the Cardiac Kids who aren’t quite here yet.


WOMB-too

July 1, 2010

The first time I heard my heart “speak” was in 1977. I figured that it couldn’t speak English, but I knew that it made some type of sound that an expert could understand. I mean, every time I had ever been to see a doctor, one or more people has placed a stethoscope against my chest. Something’s got to be ratting around in there, right?

On my first full day at the University of Alabama at Birmingham (UAB) Hospital my Cardiologist, Dr. Lionel Barjaron, asked if he could “tape” my heart. I was sort of expecting something to do with medical tape, but they lay me on a table and did the usual Stethoscope against the chest routine. But this stethoscope was attached to a microphone, and that was attached to a tape recorder. They thanked me half a dozen times, and told me that the tape would go to the medical school for the doctors-in-training to listen to. My strange plumbing gave off sounds that would tip a doctor to a problem, and obviously the vast majority of hearts are healthy and don’t produce the sounds they were looking for.

“You want to hear what it sounds like?” Dr. Barjaron asked, and turned on a speaker. “WOMB-too,” it kept repeating over and over, the first sound exactly like the word womb and the second sound like the word tooth with the th left off.

And though I hadn’t realized it, this was not the first time I had ever heard my heart speak. I was told that the heart beat – the “lub-dub” sound we are all familiar with – is caused by the valves slamming shut after the heart chambers fill with blood.

A week later it was the same room, and the same stethoscope/microphone.

“We have to do this again?” I asked. It hadn’t hurt, but I figured the recording had been a one time event.

“You’ve had surgery, and now your heart is making different sounds,” Dr. Barjaron responded. “We’d like to record those, too.” As proof he turned the speaker on again. “You hear the difference?”

“Not really,” I said. To me, it was the same “WOMB-too” as before.

“You just haven’t had any lessons on what to listen for, but to me it sounds a lot different from a week ago,” the Cardiologist assured me. “You’ll just have to trust me on that one.”

Maybe it picked up Dr. Pacifico’s  accent, I thought, thinking about my surgeon’s Brooklyn born voice.

So for a while my heart’s voice lived in my body, but also on a tape at the UAB Medical School. It’s probably gone now; that was 1977, after all. And while I own a stethoscope and have heard both healthy and sick hearts speak, I don’t know what they are saying. It’s a subtle language, the language of the heart, and can be easily misinterpreted.

But my heart can say whatever it wants, as long as it just keeps on talking.

Devil in the Slot

March 2, 2010

BONUS: 100 Karma Points to the first person who can leave a comment telling me where the title of this post originated!

You have a heart defect.

No, I’m not talking about the 1 in 125 of us who live with a Congenital Heart Defect, I’m talking about YOU. Mr. or Mrs. Average. You were born with a heart defect. Two of them, actually.

Obviously, you don’t need to breathe while you are still in your mother’s womb. You can’t breathe, unless you can somehow magically breathe fluid. So your lungs are “turned off” and you have two small defects that allow the heart to function but blood to bypass the lungs and pick up its oxygen from your mother. When you are born and you take your first breath, the body sends a signal to those two defects to shut down and for the lungs to take over.

(Pretty cool, huh?)

One of these small defects is called the foramen ovale and it is really a very small Atrial Septal Defect. In fact, it isn’t really a hole in the septum, it is two overlapping flaps. When you begin to breathe and blood begins to flow properly, these two flaps will eventually seal closed and everything will be great. In about 30% of people, however, it doesn’t close. When that happens, it is called a patent foramen ovale, sometimes called a PFO (“patent” means “stuck open”).

Many times this doesn’t cause much of a problem; sometimes it is even undetectable unless the patient coughs while having an ultrasound.

Now here is the problem: when a person has a PFO, or when it is slow to close, occasionally a small “pouch” forms in the wall of the Left Atrium. Doctors at the University of California at Irvine recently found that pouch while doing autopsy research, and it could be the source of several problems.

That little pouch is nice and quiet; any blood that gets in there settles down – it’s no longer part of the normal blood flow, and it is pretty calm in there. While the heart is pumping and blood is churning all around it, it’s a nice quiet little neighborhood… almost a gated community. (This Link has a good explanation and has a nice drawing of the pouch about halfway through the article. )

That’s not good. Blood can settle in the pouch and form a clot. And since it is on the left side of the heart, the clot skips the lungs (which not only add oxygen to the blood, but they also act as scrub brushes, too!) and then it is off on a tour of the body. Round and round she goes, where she stops nobody knows. But if it stops in the wrong place….

STROKE!

So if the doc tells us we have a PFO, we should get it closed, right? Perhaps, and perhaps not. The medical evidence isn’t in yet. We know what might happen, what could happen – but how many times is the pouch really the cause of a stroke? We don’t know yet. A clinical study (the RESPECT trial) is being conducted right now to determine if a PFO causes more strokes. At least one doctor isn’t waiting to find out – she’s full steam ahead. The Food and Drug Administration is saying wait a minute, slow down, catch your breath… let’s see what the evidence says. Then we can decide. (You really need to read what Isis has to say about PFOs, she gets the point across quite well, in simple English and with a lot of humor, too!)

So, is there really a devil hiding in that “slot” that could be in your heart? And if there is, what are the chances of him coming out? No one knows… yet.

HOME!

February 24, 2010

It always seems to take longer to come back home than it does to go to Altanta. The situation was aggrivated by the weather today – cold and windy with rain (and a snowflake or two spotted while passing through Monroe, Georgia!)

My appointment went very well! My pump is pumping, my pacemaker is pacing, and all is right in my world. Once again, it looks like the best thing that could have happened to me was not getting the Fontan. Everything is funtioning quite well without it.

We’ll talk more later, right now I am road weary. So I’m calling it a night!

Hospital confusion

February 23, 2010

What in the world is going on here?

The local weather report says that there may be snow in the Atlanta area tomorrow! I’ve been down here in broiling heat, in rain, in cold weather, but never snow… traffic tomorrow could be really interesting.

We’ll probably get an early start, earlier than usual. One of the (many) things I like about the Adult Congenital Heart Defect Clinic at Emory, if you arrive earlier than your appointment time they will probably take you a bit early. Schedules do get backed up, but I’ve walked in the door at 8:00 AM for an 8:45 appointment. and been taken back at 8:30.

Also, I need to have my pacemaker checked. The Pacemaker lab is in the rear of the clinic, and the pacer techs usually give you a test during that “down time” after the nurse takes your vital signs but before the doctor makes his/her appearance. If you live a distance away, the Emory staff have no problems making all of your appointments on the same day to save you a second trip. That is much appreciated!

It is good to see a hospital where the left hand knows what the right hand is doing. Years ago (the early 1970’s) I had follow-up appointments at a large hospital that was quite a distance from my home. Early in the morning on appointment day we would all pile into the car and drive several hours, but we would be turned away!

“Funky Heart, to see Dr. John Doe,” my parents would say.

After a few minutes of looking through the files, the receptionist would respond with “You don’t have an appointment today.”

“Yes we do! Today is the 30th, isn’t it?”

“Today is the 30th, but you aren’t on the schedule. You’ll have to come back when you have an appointment.”

The card in daddy’s hand said we were due at 10:00 AM on the 30th, but we weren’t on the schedule… needless to say, it didn’t take very long to get tired of that! But the kicker would come two weeks later, when the telephone rang.

“This is Nurse Jones at Doctor Doe’s office, we were expecting you today and were concerned when you didn’t make it.”

HUH?

Fast forward to today, that hospital has put all the pieces together and is a very good hospital, with a GOOD Pediatric Cardiology department. I have a lot of friends who have had successful treatments there. I just have to assume all the mix-up and mistakes from way back when were more than likely caused by the times. The early 1970’s saw a lot of advances in Pediatric Cardiology and a lot more hospitals were willing to tackle the problem. There were bound to be growing pains.

I can’t really say anything good about the hospital, because back then everything seemed to be so confused. But on the other hand, I can’t say anything bad about the hospital, because that occurred almost 40 years ago and they have since done some wonderful work with some really sick kids. So if I am ever asked, I usually respond with “I understand that there is a good heart program at that hospital.”

It seems to be the best answer.