Archive for the ‘Congenital Heart Disease’ Category

Back to School

November 12, 2010

“Trouble is, there’s not enough of us to go around – we’re spread thin, so sometimes, important things get ignored or don’t get said.” – Judge Tolliver (John Goodman), The Jack Bull (1999)

Yesterday I had the chance to go back to school – I went back to my Alma Mater to our School of Nursing!

I asked for directions just to be sure – when I graduated the School of Nursing didn’t exist. And I didn’t want to assume I could find it only to discover that it was in a back corner of the campus. But it wasn’t a problem; as soon as I turned off of the main highway and scanned the campus, there it was. Everything was exactly as described, which usually doesn’t happen – more often than not, I get twisted up and turned around but everything went perfectly.

After meeting the instructor for the first time, we went upstairs and into a classroom where I met the students (about 30 of them) and talked about myself and my heart defect. If you’re a reader of this blog, you know I usually post the printed text of my presentation. Not the case this time – as I told the students, when I make a presentation to Heart Families, I’ve got a plan and am pretty sure what I will say. With them, I wasn’t sure what they wanted or needed to know, so I’d just talk about myself. If they had a question, feel free to break in.

Someone had a really good question about did I need oxygen. Technically no, I don’t need oxygen, but I sleep with a flow of four liters per hour. It was originally prescribed to keep my Hemoglobin down, and I can skip it for several days without problem. When I take a weekend trip, I don’t take it with me. But I’m like a rechargeable battery and the O2 is like my charger – after about 4 days of sleeping without oxygen, I feel run down.

After I talked about myself and the Question and Answer session, we moved over a larger room set up as a hospital ward. When I walked in there was a bed to my right with a medical mannequin in the bed, tucked under the covers neatly. I saw him/it out of the corner of my eye and for a moment there I thought it was a real person!

We didn’t bother Earl (or whatever the mannequin’s name was), he looked comfortable. I took another bed, and in pairs and threes the students came in and examined me. My heart was listened to more times than I can could count, and everyone took a close look at my blue fingernails. My right hand is a little more blue than usual because of the swelling associated with my wrist, but my left hand is better suited to observe Capillary Refill (press down on the fingernail until it turns white, then release. Observe how long it takes for the blood to flow back.)

More than one student seemed to be very interested in the fact that you can’t read my pulse in my left arm – a side effect of the Blalock-Taussig Shunt, the surgery I had in 1977. In the Blalock-Taussig, the Left Subclavian Artery is cut and sewn into the Pulmonary Artery. The Left Subclavian normally passes near the shoulderblade (the Clavicle), and down the left arm. Because it has been disconnected, you can’t get a pulse in my left arm, can’t take an accurate blood pressure reading, and blood draws and vaccine injections should be done in the right arm.

(NOTE: If you have the Modified Blalock-Taussig Shunt, a small artificial connection is used to connect the Subclavian Artery to the Pulmonary Artery and the Subclavian is left intact. You usually can feel the pulse bilaterally on a patient with the Modified Blalock-Taussig!)

When the students weren’t listening to my heart, the instructor was – with an electronic recording stethoscope. I’ve had this done before, back in 1977 at the University of Alabama at Birmingham (recounted in this post.) But back then it was a Stethoscope head connected to wires that ran to a machine the size of a toolbox, that recorded my heart on a cassette tape. This one looked like a regular Stethoscope, perhaps a little thicker around the head. It would record (sensitive enough that it recorded a cough!) and then transmit the recording to a laptop computer via Bluetooth! My Geek side started getting the best of me, and I was developing a very, very bad case of STEVE WANT! But I knew that if I asked how much it cost, the instructor would inject me with 1000 cc’s of reality. Reality is a difficult drug to take – it’s good for you, but can make you feel pretty lousy.

I enjoyed my visit to the Nursing School and I’d like to thank everyone for making me feel so welcome. Even if none of the students chose to work in Congenital Cardiology, they’ll bump into other patients like me – it’s estimated that in the United States, there are slightly more adults living with a Congenital Heart Defect than there are children. Adults with Heart Defects are living longer and better, and we’ll have “normal” medical problems in addition to our bad hearts. And today’s Cardiac Kids are growing into tomorrow’s Heart Warriors.

So its important for those of us with a heart defect to “meet the public” – and not just to raise awareness, but to educate. To guide new Heart Families through this scary world we never expected to enter, but also to give the professionals who will be taking care of us a chance to learn from us. it doesn’t matter if someone is the best Heart Surgeon, the best Cardiologist, or the very best Cardiac Care Nurse… sometime in the past, these people had no idea that Heart Defects even existed.

Someone had to teach them.

Good Nurses

November 10, 2010

NOTE TO READERS: We’re off on a Secret Mission tomorrow, so there may not be a post on Thursday. You’ll hear all about it later, though!

I was looking through my 1967 Johns Hopkins records and especially looking over the nurse reports. The nurse reports make up over half of my total file – neat sheets with handwritten measurements gathered at certain times. This was long before electronic records and most monitoring equipment. Nursing was really a hands on profession, not that it isn’t now. I’ve been cared for by some awesome people over the years, and a lot of them are nurses. You see and interact with the nurse a lot more than you do with the doctor, so when you are assigned a really good nurse it is a Great Thing and a Big Deal.

A big part of the job is observation and reporting, and in the ’60’s you were doing this constantly. There weren’t many automatic alarms that would go off when something was wrong; it was the nurse’s job to almost see problems coming. You were looking, observing, and making notes on every patient, so a good nurse had her head on a swivel. The nurses reports in my file I’ve nicknamed my “pee and poop sheets” because that was a major part of what was recorded: My temperature, amount taken in (input), amount expelled (output), and what I was doing at the time. Remember I was five months old; at any time of day I might be “playing”, “sleeping”, or more than likely, “crying”. Hey, I was a baby, and you people had just cut my chest open and tinkered around in there. You’d cry, too!

The order of the day was “Observe the patient.” You can almost hear the nursing department answer OK… what are we looking for? Trouble is, Cardiac Surgery was only about 25 years old then – they knew they had to prevent Pneumonia but after that, no one was really sure what to expect. So the Surgical Department just told them to observe the patient closely.

I had a fever on my 3rd day post-op. Hopkins called in a doctor who specialized in combating fever. “We see this a lot,” he told my parents. “Many patients spike a fever on the third day after their surgery, we don’t know why. If this is a 3 day fever, it will last about 24 hours and then it will disappear. We don’t know why that happens, either.” And he was correct – it was a 3 day fever, and it was gone 24 hours later. But he also told the nurses to keep a close eye on me, just in case it wasn’t a 3 day fever.

How do I know? The nurses report for that 24 hour period is crammed with notes. The best I can figure, they were checking on me every fifteen minutes for almost 30 hours.

Good nurses are lifesavers – literally!

 

 

 

From the outside in

November 9, 2010

There are several thousand worthwhile causes and just as many ways to advocate for them. But if you want to be effective, occasionally you have to turn things inside out. Look at what you are doing from the perspective of an outsider.

First, how would you describe what you do? Personally, I write about living with my heart defect, and occasionally I am asked to speak to others who are facing the same problem. You may notice that the letters CHD did not come out of my mouth. Because 85% of the general population does not know what those letters mean. So why confuse them? And the majority of people “switch off” when they hear jargon. Many a Heart Parent can tell you, when the doctor first described what was wrong with their child’s heart and he/she used “Doctor Talk”… they were more confused than informed. So to be a good advocate, you keep the jargon to a minimum.

Using jargon implies an extra level of knowledge – one that those new to your organization may not have.  We all know what a Left Subclavian to Left Pulmonary Artery anastomosis is (Hint: That is the medical description of a Blalock-Taussig Shunt) but others might not. And they might not know who Blalock or Taussig are, or what a shunt is. Some may see all this jargon as a secret handshake – you’ve got to be “in the club” to understand it. That’s a turnoff right there. But the Heart Defect world is full of medical language and jargon, so it could be very valuable for your organization to provide a list of acronyms to every new member or worker. Welcome to the club; here’s the secret handshake.

What’s your group doing? Defining the mission quickly and clearly are important points. And it needs to be a specific goal – “Fighting CHD!” is too vague to be a goal. You need a mission statement, something that can sum up your activities in one sentence. Everyone needs to know it, and everything done on behalf of the organization needs to be done to meet that goal. A good mission statement keeps you on target. Whenever your group does something that accomplishes your task, write about it and take photos. Video is even better – and a good compact video camera is pretty reasonable these days. Don’t let Earl write the story just because he’s been here since the organization started; hire a writer if you need to. And don’t take “Grip and Grin” photos – get photos of your people doing something to advance the cause. Photos are proof that you are actually doing what you are saying that you are doing.

What do you want from donors? If the answer is money, we’ve got a problem. Even the best organization can sully its good name if it seems that they always have their hand out. People will give to a cause they support, but not every single week. A better thing to do is to figure out how to involve the donors. If there is a donor who seems to have no connection to the Heart Defect Community that you can determine, why not ask him/her to be a part of the next hospital visit?  Odds are that you will not lose the next donation – and you could turn him or her into a full-time supporter, helping out as much as possible. Get the people out on the edges involved… they may be your next group of leaders!

Heart Defects and the 2010 Midterms

November 8, 2010

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

Grunt Work

November 7, 2010

I was in Philadelphia last April, helping out at the offices of the Adult Congenital Heart Association (ACHA) as they prepared for Lobby Day 2010.  On Lobby Day ACHA members – joined by members of the Children’s Heart Foundation and Mended Little Hearts – gathered in Washington, DC to visit the US Capitol. Our goal was not a sight-seeing trip, but to visit our legislators and convince them to fund Congenital Heart Defect provisions of the new healthcare law.

Knowing the ACHA office would be swamped with work (we had a total of four people in the office at that time) I volunteered to come to Philadelphia a few days early and help out any way I could. Unusually enough, “any way I could” turned out to be…

…. copying, sorting, and stapling.

Wow – that was a classy assignment there, Steve. They must not have needed that much help, after all!

Hardly. The ACHA staff was still setting up appointments with the legislators or their staff when I arrived. 48 hours until we left for DC; 72 hours to Lobby Day, and things hadn’t fallen into place yet. When we weren’t making appointments we were on the phone with our Advocacy Director working out final details. There was also a small crisis with the host hotel that wasn’t resolved until the last moment.

Making legislative appointments for 100+ attendees, smoothing things out with the hotel, working with the Advocacy Director to make sure things were just right… I don’t know how to do any of those things. So I was copying, and folding, and sorting, and stapling – so that the people who do know how to do those things didn’t have to worry about it. Or stop what they are doing to do it.

It’s “grunt work” – the repetitious, mindless type of job that no one wants to do. Everyone there could have done it, but they had skills that I don’t have, so I did the job. My best guess is that I handled 500+ separate sheets of paper. If you attended Lobby Day 2010, your informational sheets were assembled by me. (Don’t worry, I washed my hands!)

This is what advocacy for any worthwhile cause is – the willingness to do the little tasks, the grunt work, the behind the scenes activities that makes everything flow smoothly.

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.

Flu!

November 3, 2010

Doctor: “What’s wrong with you?”  Patient: “Flu.”  Doctor: “Looks like you crashed!” – Old Joke

Ready for Cold and Flu Season?

Colds and Flu can be rough on someone living with a Congenital Heart Defect. We tend to heal slower than others, and with our less than perfect Circulatory Systems, chest colds can be a nightmare. Whenever I catch a cold, it’s usually going to hit me harder than the next guy. The same cold that will keep him in the bed for a day could keep me in the bed for several days. That is, if I can lie down. It is liable to clog me up to the point that when I lie down, I feel as if I am drowning. Often I wind up sleeping upright in the big recliner in the living room, tucked under a blanket.

Heart parents today have a yearly debate, trying to decide how to care for their child during the winter months. Some parents just bundle them up tighter than usual, others decide that the best thing to do is to go into lockdown, rarely coming out during the winter months. My parents were of the “bundle him up” group. Not because of any instructions from my Cardiologists, but rather the lack of instructions. I was born in 1966 and most of my childhood that I can remember occurred during the 1970’s. The ’70’s were “back then” as far as Congenital Cardiology was concerned – no Pediatric Cardiologist had a good answer for most of my parent’s questions because there weren’t that many Cardiac Kids around. The usual answer was “I don’t know!” or something close to it.

I had a Cardiologist who wasn’t much on the bedside manner – a visit to his office was almost like playing hockey and continually being slammed into the walls – but he was pretty smart. He told my parents that “If you want him to be a normal child, you have to treat him as close to normal as possible.” So my folks just let me go – with limits. During winter I had on so many clothes I felt like a turtle; if I fell over there was no way I could get up. I’d just lie there and roll around on the ground. If someone at church was sick I had better not sit near them, or move as soon as I realized that they were ill. I missed a few services over the years when several people had colds, and even missed a few days of school for the same reason (which highly irritated one teacher!) But I muddled through. I caught the occasional cold and suffered through it, but that is a normal part of childhood.

I can’t say this is what you should do, only your Cardiologist can advise you on what to do during Cold and Flu Season. And be sure to ask your Cardiologist – your Primary Care doctor will have good advice, but you have a heart defect. Ask the doctor who specializes in hearts, he or she will have a better answer.

Most of the time – not always – the Flu Vaccine will be recommended for us. If you are in doubt, again – ask your Cardiologist. As a general rule we’re told to get “dead virus” vaccinations. At the current time vaccinations in the United States can be either “dead virus” or “live virus”. Live virus vaccinations have actual, living virus cells in them – they are weakened, but they are living. With a dead virus vaccination the virus has been deactivated. Even deactivated, the body still realizes that a case of the Flu is present and starts building antibodies to stop it. As far as I know, only the FluMist vaccination is a live virus formula.  Be certain to inform the person giving the vaccine that you have a chronic health condition and need the dead virus formula.

While you should always be cautious, you should never be scared to live your life!

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!

Field Trip!

November 1, 2010

“Any of you guys up for a field trip?” my Adult Congenital Cardiologist, Dr. Mike McConnell, asked at the Atlanta Heart Walk.

Most of the patients said yes. “Where we going?” I asked.

“Oh, we’re just heading over to the Sibley tent,” McConnell said, pointing. “Just over there.”

Our “field trip” was a short one, only about 100 feet away. We walked up to a tent about an equal number of adults and children with a couple of people in STAFF shirts. The sign read

Children’s Healthcare of Atlanta/Sibley Heart Center

“Hi, guys!” Dr. McConnell said. “I brought some of our Adult CHD patients over. We want you to grow up to be just like these people.”

I met three or four of the Cardiac Kids (I didn’t have any of my Lucky Coins to give away! What a let down!) and one young man who was really shy. He wouldn’t speak to me, he held on to his mother’s neck and hid his face.

“Do you have a special heart?” I asked, trying to draw him out. Very reluctantly he nodded yes.

“I do too! You wanna see?” I unbuttoned the top two buttons of my shirt – not going any further on a 42 degree morning – and bent over to show him my scar.

“He’s got a scar just like yours!” his mom said. But my man was still close-mouthed, he wouldn’t tell me his name… and he lied about his age!!

“How old are you?” I asked. “Six.”

“You aren’t six!” His mom laughed. “Try again!”

“Two.”  Mom rolled her eyes. “Noooooo! He’s four!” During our conversation I learned that the little fellow has Dextrocardia – his heart is “flipped” in the opposite direction. As I understood it, most of his other organs are flipped, also. But it was obvious that he was shy, and I was not someone he knew. So mom and I talked doctors for a moment and then I said goodbye.

I’m sorry I never got your name!

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.