Posts Tagged ‘Doctor’

Not for me!

January 19, 2010

I love innovative heart surgeons and techniques, but I’m not so sure about this one. Dr. Wes has blogged about a surgeon who is performing…

Hold your breath….

WIDE AWAKE Open Heart Surgery!

The mere thought of it sends chills down my spine! Let me go on the record right now, if/when I ever have another operation, I want to be OUT. I want to be so far out that I am practically in the next county. Not because of the possibility of pain, but because there are sounds in an operating room that the patient just isn’t meant to hear.

Bone Saw, anyone? I didn’t think so! Maybe this is not such a great idea after all.

With Special Guest Star….

December 11, 2009

Coming up on Adventures of a Funky Heart!….

On Sunday, December 13, 2010, Funky Heart! will host SurgeXperiences, THE premier Surgical Blog Carnival! Be sure to stop in and read the very best writing by Bloggers who really know how to make a cutting remark! As far as I know, this will be the first time that someone with no medical training hosts SurgeXperiences!

And on Tuesday, December 15, 2010, we’ll feature an interview with Heart Warrior and award-winning musician Paul Cardall! Paul is recovering from a recent heart transplant and writes the blog Living for Eden. His latest album, Sacred Piano,  recently spent 20 weeks on the Billboard New Age Music charts and reached #5!

All that and more, so stay tuned!

Computer Assisted Fontan Surgery

December 4, 2009

I just don’t “get” the Fontan. At all.

I was recently asked by a CHD organization to write an article about the Fontan Procedure for their newsletter. I had to turn them down; I had to say that no matter how many diagrams I studied, and how many textbooks I have read, I just don’t see how that operation works. Thankfully there are people who are a lot smarter than I am who know how to explain it, and a few of them understand how to surgically alter a defective heart to make the Fontan work. Thank goodness for that, because if they didn’t, there would be a lot fewer of us around.

I was scheduled for a Fontan in 1988; that surgery went completely wrong and they barely got me off the table. I never got the Fontan, but many others from that time period have needed a Fontan Revision or Fontan Conversion. (After clicking the link, pay close attention to Section V.)

One of the difficulties in understanding lies in the fact that the Fontan has several variations, and is almost “customized” for the patient. Now there is a new computer simulation available to test various versions of the Fontan on a defective heart. The simulation will help determine blood flow patterns to help surgeons choose which variation of the Fontan works best for that patient.

The two researchers who developed the computer simulation have also designed a Y-shaped graft to be used as part of the Fontan. The Y connected will be used to join the Inferior Vena Cava (The major blood vessel leading to the heart from the lower part of the body) to both branches of the Pulmonary Artery, not just the single connection that is used now. According to the Abstract, the Y graft “is expected to be put into clinical use within a few months.” I am not sure if that means it is ready for clinical trials or has passed the trials and is ready for real world use.

Either way, these developments look promising!

Trust me, this won’t hurt a bit!

November 23, 2009

Here’s an excellent article from Harvard Health Publications about do it yourself heart surgery! No medical school education needed and no experience required!
Try it! It’s fun!

You need a buddy!

November 16, 2009

Here’s a good post by The Happy Hospitalist about the mental checklist a doctor goes through whenever a patient is examined. In this case, however, the doctor misread an important sign and decided to send the child home.  Happy describes what happened next:

Several hours later the child was complaining of a mild headache, was having a bout of diarrhea and was not interested in moving or eating or drinking.  He was still wheezing and he was still having fevers… When I heard about how the child was acting, how his oxygen saturations left no wiggle room for safety, how he was complaining of a headache (which could be a sign of low oxygen levels), how he sounded lethargic, how he had a history of asthma and SVT, and how the H1N1 virus was disproportionately affecting the young in adverse ways, Mrs Happy and I recommended that she ignore her physician’s advice for watchful waiting and take her child in for an emergency assessment and emergency medical care.

This is a situation in which a parent excels – watch your child closely when he/she is sick. No one knows them better than you do; often you are the first person to detect that something just isn’t right. You may not have the medical education, and you may be following a gut feeling, but if that alarm bell starts going off in your head, act on it. Many a CHDer was first diagnosed by “Dr. Mom”… who may have had no idea what was going on, but they realized that something was wrong.

As the mother, you have to do what you think is right.  That means if you think your child is in danger, you take them in for an emergency assessment and emergency medical care, regardless of what anyone else says, including the physician.

PalMD of the blog The White Coat Underground continues the theme as he discusses the best thing you can bring to the hospital with you: an advocate. Going in to the hospital doesn’t automatically make you an idiot, but it can be extremely difficult to keep your head in the game:

Even minor illnesses change the way we think, not just about mortality and finances, and other “big things”, but it changes our ability to think…Trying to parse through this complex information when in pain and stoned on Dilaudid is a challenge.

So plan to be out of it – and if you aren’t coherent, you need someone to look after you. Perhaps not 24/7 but as often as possible. A perfectly healthy friend of mine lost all the feeling in her right side and collapsed one Friday afternoon, and was rushed to the ER of a “Regional Hospital”. After some tests were run, the doctor came in, sat down, and announced that she has suffered a stroke… and that they would do an MRI first thing Monday morning to determine the damage and start treatment.

I was sitting on my couch 35 miles away; yet I clearly heard her husband scream “The hell you say!”

Take a friend to the hospital – or be a friend and go with someone you know.

Mark and the Cardiac Kids!

November 5, 2009

“How long has it been since you posted those cool videos?” a friend asked me. “You ought to post them again. When you showed them the first time there were about five people reading Funky Heart. You’ve got lots of new readers since then.”

She could be right… I can’t recall when I posted them. And trust me, if you’re having a bad day, this will cheer you up. And another video will follow on Friday!

Put on your headphones and turn the volume UP; here is Mark O’Shea and the staff of the Pediatric Cardiology department of Vanderbilt Children’s Hospital with the song, Look at You Now!.

What I learned at the doctor’s office

October 26, 2009

Tuesday’s task is going to be to try to update Funky Heart readers on Chloe’s surgery, but I learned something very important at the doctor’s office Monday. Something I had never thought about: You need to take your own reading material to the doctor’s office.

As you may remember, it was time for my INR test, so I got checked in at the desk and had a seat. They usually take the patients who just need bloodwork pretty quickly, so I only had to wait about 15 minutes. But during that time I saw the lady across from me put down her magazine, sneeze into her hands….

… and pick the magazine back up and continue reading.

Take your own book/magazine/newspaper – you never know where the ones in the waiting room have been.

New Adult Congenital Heart Defect book from Emory!

August 28, 2009

By now I think you know how much I appreciate the Adult Congenital Heart Defect (ACHD) group at Emory University Hospital. They aren’t just a group of doctors and nurses, they’re a team, and I’m glad to have them on my side. If my heart defect ever wants to cause trouble, I’m bringing them to the fight with me. I want every advantage I can get, and I do not plan to fight fair!

Emory’s ACHD group has produced a new 64 page book for Adults with a Congenital Heart Defect! Although the printed version won’t be out until next week, it is already available online! Author Teresa Lyle (my nurse practitioner!) says that the online copy is not the final version, but the changes are minor and mainly involve artwork.

This book can be especially useful  to older teens with a heart defect. Pretty soon you will transition into the adult world, where a lot of Heart Defect patients get “lost” – they fall away from care and stop going to see their cardiologist. This booklet can help you find a good doctor and keep you in the loop. Modern CHDers tend to do well, but things go a lot better if we have good doctors and nurses that understand our defects. It can also help you take control of some aspects of your life that you may not have even realized are affected by your heart problem. We need to make sure we take antibiotics before dental appointments, for example.

This is going to be a valuable resourse both for older teens, and also for us older Heart Warriors who may be moving on in life: it will help keep us on the straight and narrow if we decide to move, start a family, or change jobs. And I highly recommend it!

Help yourself

August 17, 2009

Have you ever heard of the Index Medicus?

You probably haven’t, but it’s very important. The Index Medicus is a very large  series of books that contain an index of medical journal articles. If you have a problem that your doctor needs to research, the Index Medicus is the first place for him to look.

They stopped publishing the Index in 2004. It was just getting too big – all the volumes combined weighed an amazing 152 pounds! PubMed, an electronic database, could do the same job that the printed version did, without all the bulk.  So now instead of heading for the medical library to look up some information, your doctor sits down at his computer.

With all this information available, there is no way that your doctor can even hope to keep track of it all. And remember, you aren’t his only patient – he’s got dozens more, just like you. Unless he is specifically researching your medical condition at the moment, he’s probably not going to stumble across a journal entry and think “Hey! I really need to discuss this with Steve!”

This is part of the reason that you need to take control of your own healthcare needs. The only person you can rely on 100% of the time to watch out for you is… YOU.

So get involved. Learn your defect, top to bottom. Know what medications you are taking and what they are supposed to do. Read the medical journals (you can use PubMed, too) and keep up on the newest research. Read, read, read, and learn. Only use reputable sources – if you see something on the evening news, check it out. Those reports almost always present bad information, but learning how to detect bad information will keep you away from quacks who HAVE THE CURE!

But don’t walk into your doctor’s office waving a fistful of printouts. That’s an insult: He’s spent years in medical school, you’ve spent half an hour on the Internet. I bet that he knows more than you do! A better way to present your findings to him is to say “Doctor, I have been reading about ______, what’s your opinion?”

Most doctors appreciate active, engaged patients. Some don’t – they would prefer you sit quietly, do as your told, and if you are good, he’ll give you a lollipop when you leave. If you have a doctor like that, it’s time to find another doctor.

And those lollipops are bad for your teeth, anyway!

REPAIRED, not fixed

August 7, 2009

“We are home from the hospital! Our daughter’s heart is fixed,” the blog post says.

While I am glad that the child has been released from the hospital and is on the way to recovery, you need to understand something: A heart defect is never completely “fixed.” It requires lifelong care – even if you have a “minor” defect, such as an Atrial Septal Defect (ASD).

Even if a defective heart can function correctly through surgery, it is still defective – it is not the same as a normal cardiac organ. It’s not as strong, blood flows in strange directions, and there are probably structural problems. Even with a heart transplant, the patient still has to take anti-rejection medication.

As the person grows and ages, so does their heart. Repairs done at an early age can wear out and need to be done again. Here’s an article about a Ventricular Septal Defect (VSD) repair done by catheter rather than traditional surgery, but that isn’t what I want you to see. Read the fourth paragraph:

After many years, the patch that was used to correct the defect began to tear and needed to be repaired.

Ut-oh. So if you have a heart defect, you need to take care of yourself – forever. The first thing you should do is read the Bethesda 32 Report. Every year, the American College of Cardiology (ACC) holds a meeting in Bethesda, Maryland, to focus on one important issue. The discussion of the 32nd meeting was centered on the care of adults with heart defects. The Adult Congenital Heart Association (ACHA) has an information page here; the full text can be found here. The full text link has an option to print the report as a .pdf file (It’s long!) or page down a little for a phone number to order a copy from the American College of Cardiology. I don’t know if there is a cost; I downloaded and printed the .pdf.

The ACC has classed all heart defects into one of three groups: Simple, Moderate, and Complex. Those of us with Simple defects can usually be cared for in the general medical community; Moderate and Complex defects need to be seen at an Adult Congenital Heart Defect clinic periodically. (My defect, Tricuspid Atresia, is considered Complex.) We could also need to take special precautions during non-cardiac surgery and dental appointments, and make various other adjustments to our lives.

90%+ of all children having Congenital Heart Surgery will live to adulthood, and there is no reason they can’t have full lives. But we need to realize that we have to take extra steps to take care of ourselves.

Then we can go conquer the world!