Posts Tagged ‘Doctor’


September 29, 2010

One of my earliest memories is getting up very early in the morning and loading into the car for the long drive to see the doctors at Johns Hopkins. My parents were younger back then; with a little luck we could make the trip in one day. Just about sunrise we’d encounter a Stuckey’s Restaurant close to the North Carolina – Virgina state line. That was where we always stopped for breakfast, and the light blue roof became one of our landmarks. I looked forward to the restaurant, and the folks did too. Then one day…

…. one day, we came around the corner to find our favorite restaurant was now a pile of ashes! The only thing left, somehow, was the roof. It was pretty much intact, as if someone or something had gently removed it and set it aside before the restaurant burned, then returned it to its proper place.

Well, that’s not good. So we found breakfast somewhere else, and didn’t think anything about it until we got to Hopkins. There, we found out that my Cardiologist – arguably the best Cardiologist in the world – had left. Dr. Richard Rowe was now Head of Cardiology at a hospital in Canada.

No Stuckey’s, no doctor… these two events must be connected in some way, correct? And by the way, I am not superstitious!

I wear a pair of lucky socks whenever I have a doctor’s appointment. One day they’ll wear out, and I’ll rescue them from the trashcan. If I have to cut a small section out of the toe and stick it in my pocket, I will.

Why? At one appointment my doc looked at the EKG and his eyebrows shot up. That is never a good sign.

“You’ve developed an Atrial Fibrillation since your last appointment,” he said. Not good – A-Fib can lead to fainting or a stroke. And I was already taking Amiodarone to combat A-Fib, so apparently the Fibrillation had broken through.

“Double your Amiodarone and have an EKG test in two weeks. Have them fax us a copy. You may eventually have to have an ablation to try to knock that A-Fib down.”

Ablation – a catheter maneuvered inside of the heart with a probe on the end, designed to burn away the areas causing the out of sync heartbeats. Wonderful.

So two weeks passed, and I had the EKG done and faxed. Naturally, the EKG tech won’t even tell you the time of day, no matter how much you beg. But I got my answer that evening, when they called and told me I needed to come to the hospital for an appointment with the Electrophysiologist.

So the next week I was back, being examined by the specialist – wearing a new pair of socks. Didn’t bring that pair intentionally, just needed an extra pair and tossed them into my carry bag.

The doc hooked me up to a 12 lead EKG (the first one I had ever seen), listened with his stethoscope, and asked me several questions.

“So, how do you feel?”

“Worried about what you are going to find, but other than that, pretty good.”

“Tell me how you feel when you are having an episode.”

“Actually Doc, I can’t tell you. I don’t feel them.”

“Not at all?”

“No sir.”

He put the stethoscope back on my chest. “You are in A-Fib right now. Do you feel any different? Anything at all?”

“No sir,” I said.

He listened some more, and run another EKG. “I’m going to discuss this with your Cardiologist,” he said as he excused himself from the room.

In a few minutes he was back. “Since you don’t even feel it, and it doesn’t seem to be bothering you, I’m going to discontinue the Amiodarone. Get an EKG faxed to my office in two weeks. And if you feel light headed or more tired than usual, call me ASAP. But if it doesn’t bother you, I’m not going to medicate you for it.”

And with that we were out the door. The two-week EKG was acceptable and I felt fine, so all he told me to do was to discontinue the medication and come back for a routine checkup in one year. And ever since then, I walk into a doctor’s office wearing my lucky socks.

But I’m not superstitious…. what makes you think that? 🙂

What you need in a hospital

September 16, 2010

In an earlier post I discussed what we need in a Congenital Heart Surgeon. Reader Heather let the cat out of the bag by mentioning that wasn’t all you needed… you need a good hospital, too.

How true, how true. As I have said many times before, the doctor you need does not practice in a town of 5,000 people. There aren’t enough patients in the community to allow him or her to sharpen their skills. Skill partially depends on volume – you do something often, you do it right, and you evaluate your results (and you keep evaluating them, constantly). That’s the only way to improve. You learn from someone who is experienced, then you do it yourself, knowing that anything less than 100% is unacceptable. As you gain skill, you learn how to do it better and faster.

That same fact applies to the hospital. You can have the best surgeon that ever put on a mask; but if the hospital you are in has very little experience with caring for post surgical patients, there could be problems. That applies to the type of surgery you are having, not to all surgeries. Caring for someone who just had heart bypass surgery and someone who just had congenital heart surgery is a lot different. Studies prove that the more experience a facility has, the better the outcome.

I love my community hospital. We have about 150 beds and I’m on a first name basis with a lot of the people there. I know the doctors and the nurses not only from the hospital, but I see them in the community. I saw one of my favorite nurses in the grocery store just last week. But that doesn’t mean I’m going to let them do heart surgery on me – they don’t have the skills. They are well-meaning people and I am sure they would do their best, but if I had surgery there, I’d probably come home in a box. We can’t have that, I’m claustrophobic!

A few months ago there was a plan being considered by England’s National Health Service to consolidate the number of Pediatric Heart Hospitals. A good number of people were understandably upset but the reasoning is logical: some of the units performed a relatively small number of surgeries. Consolidating the number of centers may make it inconvenient for some, but it will make the overall results better.

For us here in the States, that probably means a trip to a large city hospital. There are exceptions – Durham, North Carolina  (the home of Duke University Hospitals) is fairly small and Rochester, Minnesota (Home of the Mayo Clinic) is also a small city. But in most cases, we’re heading to The Big City – New York, Los Angeles, Nashville, Boston, Birmingham, Kansas City, Denver, Atlanta. These are only some of the destinations whenever the Heart Warriors I know head to the doctor. “Medical Tourism” is all the rage right now, but to us its old news. The average Heart Warrior is also a Road Warrior; we’ll go to where the best hospitals and doctors are.

And in the words of that great philosopher, Bruce Hornsby – That’s just the way it is.

Action This Day!

July 30, 2010

More bloodwork today, and a doctor’s appointment later this week. As I have said before, I don’t just have a doctor, I have a medical team! They really come in handy until something unusual happens. Then it seem that every last one of them wants to schedule a follow-up appointment! I have seen my primary care doctor (his stand-in, actually, as this past week was his vacation) and my newest doctor, an Orthopedic specialist. I’ve been in contact with my Cardiologist’s office by e-mail and checked my pacemaker by telephone. When I fell I landed on that section of my abdomen so I scheduled a pacemaker check to see if there had been any damage – thankfully it is responding just fine. So I think I have checked in with just about everyone!

I’m ready for the wrist to be better, for all these bruises to heal, and to put this behind me. I haven’t walked in two weeks, and patience is not always one of my virtues! British Prime Minister Winston Churchill would often write the phrase Action This Day when he wanted something done NOW, and eventually he started using large red stickers with the phrase.

I’m like that, too – I haven’t walked since my fall (July 22) and I can feel it. I want my knees to get better right now so I can walk instead of waddle. They’re coming along, slowly…. not nearly as fast as I would like! Exercise of any kind does my weak heart good, but right now I’m on the sidelines and I hate it!

Churchill also did most of his work at a stand-up desk, perhaps I need one of those, too!

Action This Day;

Don’t trust me

June 6, 2010

Google Alerts is pretty cool. I can set up a search for a phrase, and whenever Google Alerts finds that phrase on a new (to them) webpage it will send me a link to it. I have several Google Alerts, and one of them searches for the phrase “Congenital Heart Disease”.

I got a link from Google Alerts over the weekend that almost caused me to jump through the roof. I’m not going to give you a link – no need for this idiot to exist, much less get a link from me – but I will quote from his webpage:

Some of our friends/patients have congenital heart disease, meaning genetically they have high cholesterol despite avid exercise, diet, and supplements. However, for those of us who may not have a specific history of heart disease, yet want to prevent it , we should consider what is best for us to do – regardless of our family history. It’s not all about fat and salt, contrary to public opinion and the words of associations such as the American Heart Association.

SAY WHAT? I’ve been living with a heart defect for 43 years and writing this blog for two years. No one has ever said to me (and I have never found in any research) that Congenital Heart Disease causes high cholesterol. But wait, it gets even better!

However, speaking of salt, most people are sodium deficient. There is absolutely nothing wrong (and it actually should be encouraged) with adding salt during your cooking.

WHOA! Anyone been following the news lately? Salt isn’t your friend – especially if you have Congestive Heart Failure (CHF).

You could shake your head and say that the writer just doesn’t know the facts. But that’s not it. A little further down the page, our writer provides the answer to all your health concerns:

You’d be amazed at how a diet and lifestyle change can get you off cholesterol-lowering and high blood pressure medications. Adding natural nutriceuticals/supplements can add even more help.  If you have never received (our services), give us a call at (XXX) XXX XXXX. We would love to help you get on the road to eating healthy for life.

It seems that he isn’t just incorrect, he’s intentionally misleading you in order to sell his product. Here’s the truth of the matter: If you try to “cure” or control a Congenital Heart Defect with a diet plan or nutritional supplements alone, you will die. It can’t be done – heart defects require constant attention and lifelong care. Even those of us with a “simple” Atrial Septal Defect are recommended to get a periodic Cardiology exam.

So here’s what I want you to do – don’t trust me. Assume that I am just some idiot with a keyboard and an Internet connection. Obviously you have a computer; Google your CHD and look up the research for yourself. Learn how to read it (not so hard these days, you can just Google what you don’t understand) and learn, learn, learn! Talk to your doctor at length, pick his/her brain for all the information you can find. Ask questions. Take the answers and use them to think of even more questions to ask.

Remember that the person who is going to be most affected by your health is… you. The doctor is looking out for you, but at the same time, he has other patients to worry about. You probably aren’t in the forefront of their mind. So learn all you can about your health, and get involved in your own care. Take a hands-on approach.

It’s your body, learn how it works and how to take care of it!

Feed medical information to the GATOR!

May 26, 2010


My cousin and her husband just stood up and cheered – both of them went to the University of Florida! This has nothing to do with UF… but in a way, it does.

Recent research done at the University of Florida shows that 86% of adult patients use the internet to find answers to health related questions. Yet, only 28 to 41 percent of those patients discuss the information they find with their doctors.

And as much as we’d like to think that people know enough to toss aside bad information, we all know people who think “It must be true; I read it on the internet!” As one of the researchers delicately put it,

“This discrepancy suggests that the majority of users accept web-based health recommendations in lieu of professional advice.”

Oh, boy. You know, you really don’t need that much to post something on the internet: A screen, keyboard, and internet connection will get the job done. You don’t need a degree or even a high school education.

So the good folks at Florida developed a five step system to evaluate the authenticity of health information you find on the internet. Naturally, they gave their system a memorable name – GATOR. (What did you expect? The University of Florida developed the first Sports Drink… and named it Gatorade!)

GATOR stands for Genuine, Accurate, Trustworthy, Origin and Readability – the five qualities you should look for when searching for medical information online.

Genuine: Is it a legitimate health website? For example, see THIS ARTICLE about Heart Defects and a common antidepressant. But also look at the URL and the owners of this website: are they trying to give medical information, or sell you their legal services?

Accurate: How correct is the information? This one can be a little harder to answer, as you need to know at least a little something about the information you are looking for. Chances are you do – so does any new information you learn seem logical and reasonable?

Trustworthy: This is very closely related to Accuracy, as accuracy usually builds trust. Does the information seem correct? Is the information linked, and do those links lead to legitimate sources that back up the information? Will another source give you the same information?

Origin: Where did the information come from? Google the author and see what you learn. Does he/she seem to know what they are talking about? If the website is formatted as questions and answers, look for questions that aren’t answered. It doesn’t matter how much you know, sooner or later someone’s going to hit you with a strange question. How you react to it is very telling. Obviously, if the majority of questions are answered with the phrase “I’ll get back to you on that!” then maybe the writer doesn’t know that much about the subject after all! Questions can be badly worded; does the writer ask for a clarification or attempt to interpret what the questioner wants to know? Or does he/she just dismiss them out of hand?

Readability: Can you understand it? Medical information that you can’t understand has no use. A link may take you to the original research (which will more than likely be written in “Doctor Talk) but can the writer rephrase it so that you can understand it? And when he/she does, is the information still accurate?

After going over the GATOR plan I think Adventures of a Funky Heart! stands up pretty well. I write about my life with a Congenital Heart Defect; I do my best to be accurate in what I say (I have links to the research that I post, you can read it and draw your own conclusions!) and I tell you many times to get a good doctor, and don’t do anything based on my advice without checking with your own doctor first. And I try to write in everyday language.

I think I would survive a GATOR Attack!

The wrong question

April 29, 2010

The question we should be asking isn’t “Is it right to consolidate centers that offer Congenital Heart Defect (CHD) surgery in favor of larger centers?” but rather, “How do we get a CHD patient that presents at a non-surgical facility to one of the large surgical centers?” This question really has no good answers.

At 11:21 PM last night, a mother delivered a child at a smaller facility that does not offer Congenital Heart Surgery. The child, a five-pound, six-ounce boy, appeared to be showing the signs of Cyanosis. There has been no indication of any potential for cardiac problems noted in the medical records, and the child was immediately evaluated by the Cardiologist on staff.

The Cardiologist noted the presence of several unusual heart sounds, which along with the Cyanosis, lead him to believe that the child may very well have a Congenital Heart Defect. However, he is not sure of the exact diagnosis. For further testing the child needs to go to a facility with advanced imaging equipment, and there are two hospitals that can provide this service: Hospitals A and B. Hospital A has imaging equipment but no Congenital Heart surgeons; Hospital B (304 miles away) has both. The Cardiologist chooses Hospital B – perhaps the easiest decision that will be made all night.

Meanwhile, the parents have been informed that there may be a health issue with their child, and they may need to travel to a larger facility. In a small room with a Hospital Counselor, they discuss their options, which at the moment are largely unknown. In a few moments the Cardiologist enters the room and states that their child may have a serious heart problem but he is not sure. He recommends the child be taken immediately to Hospital B and possible surgery.

Now our questions multiply: Is the infant stable enough to fly? If yes, is the weather suitable for helicopter transport? Is a helicopter available? What kind of medical skills will be needed for the journey? Does the hospital have someone who is qualified to provide that level of care? If not, can someone be found quickly?

Is the mother able to travel? If not, how will the mother travel to Hospital B when she is well enough to travel?

These are the medical questions that need to be answered. Non medical questions could include anything from how will the family arrange for their clothing to be delivered to them at Hospital B, where will they stay, do they require any financial assistance, and what will happen to their vehicle? After all, when they arrived at this hospital, they never expected anything but the miracle of childbirth. Now they have been thrown into a world they do not want to visit, but have been informed that this will be their permanent home.

At 2:13 AM the phone rings in an office of Hospital B. The person who answers the phone knows that the Cardiologist on Call has been discussing a case with a fellow doctor at a small facility and that the child in question is being transported by helicopter. The phone call informs him that the helicopter about fifteen minutes from landing.

In turn, this person calls the Catherization Lab, Hospital Social Services, and Cardiology to relay the news. With great reluctance he calls the number of a home near Hospital B. Apologizing again for waking the family, he tells the woman who answers the phone that the helicopter is near.

The woman represents the local Congenital Heart Defect support group and is a Heart Mom herself, and has volunteered to work with new parents and try to guide them through their first journey into the CHD world. Just before leaving the house she looks into the room where her young daughter sleeps, her personal reminder of why she answers the phone in the middle of the night.

Obviously, this story is fiction – or it may not be, as 1 out of every 125 children are born with a Congenital Heart Defect. Many of them are born at smaller facilities that offer little to no Open Heart Surgery experience, and need to be relocated to “Hospital B” for evaluation and possible surgery. In my opinion, asking if closing smaller facilities in favor of larger, more experienced hospitals is the wrong question. We need to concentrate on smoothing the transition from smaller hospitals to the larger centers where help is more readily available.

The Other Side of the Coin

April 7, 2010

Despite the fact that the overall time doctors and patients spend discussing medication is going down, there are still doctors out there that will go to bat for their patients. When you find one, grab on and don’t let go… an intelligent, proactive patient coupled with a doctor who goes above and beyond the call of duty are hard to beat!

That’s one reason I love my Adult Congenital Cardiologist and his team at Emory University Hospital. There have been some changes recently that make it a little harder to get in touch with them than in the past, but these all seem to be because more and more patients are being seen. (That’s great news! More and more of us CHDers are hanging around!) But they will get back in touch with you, especially if it seems that a problem is developing. I’ve had the Nurse practitioner that works with my doc to call me at 8:00 PM at night – say, don’t you people ever go home?!?!

Laurie Edwards knows just how important it is to have a doctor who is on your side, and she give us a good example – not by bragging on a good doctor, but by showing us the exact opposite. In this case, Laurie has to hold her tongue while a friend lives the nightmare.

The Professional Patient has a good post titled Accepting that you might be like this forever. “Congenital” means occurring at birth, so someone with any kind of congenital problem needs to drop the word “might” from that statement. Even if you have a corrective procedure, you’ll probably have residual effects and need to be monitored all your life. A doctor/advocate can help you not only with your general health and medications, he can go to bat for you when questions arise about your health status. For example, try to apply for any kind of medical coverage with a pre-existing condition! Even if you are successful, there are going to be forms to fill out and examinations, and someone is going to want to look at your medical records. It is going to be a pain in the *ahem* – but having a medical professional who will handle their part of the paperwork quickly and efficiently will make the road a little smoother.

When you find a good doctor – grab him and don’t let go!

Ask Questions!

April 6, 2010

Here’s a scary report, courtesy of Kevin, MD: Patients don’t ask questions of their doctors.

While there are a precious few patients who are totally involved in their health care, the vast majority just take their doctor’s advice at face value. A 2008 study found that when 181 people were prescribed a new medication, they asked a total of 199 questions (or made a comment) about the new drug. That’s an average of 1.09 questions/comments per patient!

What’s worse, the same study showed that the doctors didn’t talk, either. The average office visit was 15.9 minutes, and the patient and doctor spent an average of 49 seconds discussing the medication. The length of discussion ranged from a high of 351 seconds (5.85 minutes) to an amazing 1.9 seconds! (What can you say in 1.9 seconds?!?!)

As noted before, patients who are more involved in their own health care ask more questions. That’s you. Having a Congenital Heart Defect means that you are, for all intents and purposes, a patient pool of ONE. Others may have the same defect that you do, but no CHD ever treats its owner like everyone else.

As I’ve written before, I have a hernia. It’s usually well-behaved, but occasionally it will get pretty angry with me. A hernia repair is a fairly simple operation these days, and usually doesn’t even require an overnight stay… except for me. My Cardiologist does not want to authorize the operation, instead asking me to just fight through the bad times by prescribing couch time and TV. “I could spend a day explaining your anatomy to the surgical team,” he has said. “And they still wouldn’t understand it.” It’s not that he can’t, my doc has a couple of teaching awards to his credit. I’m complicated.

So if you don’t know what’s going on with your body, it is time to learn. And ask questions – what is this medicine supposed to do? What are some of the side effects? What do you think would happen if I decided not to take this drug? Are there any other options available? All of these are legitimate questions – and if your doctor gives you an answer in 1.9 seconds, ask another question. You can control how long he talks to you. Conversely, you can find a doctor who will spend the time needed to help you make a good decision.

It’s your body, and the medical decisions you make affect you, and rarely anyone else.

What’s your guess?

March 29, 2010

From Dr. Wes:

“We’ve got a 40-year-old male with a pacemaker and a strange X-Ray down in Radiology. One of the interns said`Whoa!’ when he saw this but I don’t think that’s his official diagnosis. What do you make of it?”

(Hold your arrow pointer over the X-Ray for the answer.)

Change of Heart

March 26, 2010

“You can  settle for less – an ordinary life – or do you feel that you were meant for something better? Something special?”

I used to have a T-shirt that read “Change of Heart at UAB”. UAB is the University of Alabama at Birmingham, and in the late 1970’s it was THE place for Cardiac surgery in the Southeast. After my second heart surgery the staff expected you to get up and get around, and one day my “travels” took me into the hospital gift shop, where I bought my shirt. My dad contended that had to be the most expensive shirt I had ever bought (Buy a T-shirt, get a FREE Heart Operation!) but I was proud of it.

But right now, I’m going to send you on a trip. You’ll be visiting my friend Sharon, who is going to tell you the story of an event that happened last year – one year ago exactly, March 26, 2009.

“Pack a suitcase for 3 days and get here as soon as possible,” he said. I started to cry and scream all at the same time. “You’re kidding? Thank G-d!!! We have it! You’re getting the heart!!!” I still get tears when I think of this moment.

You’ve guessed it – you are going to ride along with Sharon as her husband gets a desperately needed heart transplant. You won’t find the entire story – Sharon says she was in tears as she wrote it and had to take a break. But you will see the next part when she posts it.

And I bet you’ll be in tears, also.

But for right now, GO! I told Sharon that she’s have some company today!

Click here to read Sharon and Anthony’s story!