Posts Tagged ‘question’

Your Choice (My Answer)

October 14, 2010

Yesterday I asked Funky Heart! readers the question Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? To make it a little bit more difficult I added a stipulation: Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

The question generated a lot of debate and discussion (as I hoped it would). But what would I choose to do? The answer might surprise you: I’d choose to prevent Congenital Heart Defects.

Preventing all future heart defects would isolate those of us who already have them… the need for Pediatric Cardiologists would drop as would the need for surgeons with CHD repair skills. You can assume there would be the need for a number of surgeons as CHDers could easily need heart operations later in life, but perhaps not as many as before. The number of Cardiologists would also decline, slowly – there would be a need to serve the current number of patients but that would drop as the patients begin to age and no new cases occur.

Older Heart Warriors would have to increase their efforts to inform and educate younger patients and their families. Not being boastful, but this would be the perfect job for an organization that I am a member of, the Adult Congenital Heart Association (ACHA). We’re already working toward a similar goal: adolescents with a heart defect tend to fall away from good cardiac care as they reach adulthood. They no longer visit their Pediatric Cardiologist; nor have they found an Adult Congenital Cardiologist. A good percentage of them may not even realize that they need an Adult Congenital Cardiologist.

The ACHA is working to prevent this from happening, to makes sure CHDers get good care all of their lives. Currently the Bethesda 32  report outlines care guidelines for the Adult Congenital Heart Defect patient and the ACHA’s Vision 2020 Project is a program designed to provide a seamless transition path – from Pediatric Cardiologist to well-trained, competent Adult Congenital Care Cardiologist without a break in care.(Bethesda 32 may be a name you are not familiar with. Every year, experts from the American College of Cardiology meet in Bethesda, Maryland to devise proper care guidelines for a segment of cardiology. The 32nd time they met (the year 2000), they devised guidelines for the care of adults born with a Congenital Heart Defect. You may not be familiar with the name, but the Bethesda 32 Report is very important to the CHD Community. You can read a good summary by CLICKING HERE.)

In the fictitious world we’ve created – one in which all new CHDs can be prevented – older Heart Warriors would have to step forward. We’re the voice of experience, we’ve literally been there and done that. And in this brave new world, we’re a lot more important. Now, we’re going to have to be teachers – teaching the younger generation how to take care of themselves, what to do and what to avoid. And we’re going to have to help each other out, too… the number of Adult Congenital Cardiologists will also begin to drop. After all, in this world where CHDs can be prevented, why specialize in a field that in time, will no longer exist?

This will cause problems, but I believe they can be overcome. We’re all in this fight together, and as Benjamin Franklin said, “We must all hang together or surely we will hang separately.”

Your choice

October 13, 2010

It’s going to be a very busy day for me – I’ve got a therapy session and several other errands to run. I’m leaving early, and could be out late. So today’s post is a question:

Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

Give your choice and your reasoning in the comment section.

Houston, we have a problem!

January 20, 2009

I have a problem, and I need your help!

My hernia has really started acting up the last few days, and I’m worried that it may leave me on the sidelines for Lobby Day. If it does, I’ve got an alternate plan… I’ll stay at our co-ordination center and work with the ACHA office staff, doing whatever needs to be done there. I’ll still blog as we get reports back from the Capitol building and as our members return from their lobbying efforts. I’m also pretty sure that I can arrange a couple of interviews – you’ll read those after I have a chance to listen to the tape and type them up.

Would you rather hear from a CHD survivor? A Cardiologist? Or a Heart Parent?

Liveblog on Funky Heart or Twitter? Or both? (There might be some activity concerning Lobby Day on The CHD Blog; Kim and I haven’t put out heads together on that yet.)

My question is, what do you – the CHD community who reads this blog – want to read about from Lobby Day? I have a general plan, but I’d like your input… you could easily have a perspective that I haven’t thought of!

Have an idea? Leave a comment!

I was here as a Child…

August 17, 2008

Back when Adult CHD’ers were Cardiac Kids, doctors would often tell our parents that our operations had fixed our heart. Sure, we might have some limitations due to Cyanosis, but kids can learn to live with that. The important thing was that we were A-OK!

Time passed, and one fact become glaringly obvious: We weren’t A-OK.

No one had been lied to. Congenital Cardiac Surgery was a young field, and there were practically no older survivors to draw data from. Our doctors were sincere when they believed that our heart problems were in the past. Perhaps part of it was a feeling of relief that the immediate crisis had been dealt with. The patient was stable and should survive. Ergo, we were “fixed”.

But as someone with a Congenital Heart Defect ages, they can begin to to have some of the problems that heart-healthy people do. Granted, we probably won’t have the same problems, but age gets to all of us. And a good percentage of us may hear those dreaded words, “I think we’re going to have to operate…”

Often our first surgery was done as soon as it became apparent that we were sick. Lots of Adult CHD’ers have “We need to operate NOW!” stories from their early years. But if we are getting proper medical care, a good cardiologist can detect the subtle changes in our adult heart that are the first signs of trouble, and with luck we have a “heads up” and can prepare for surgery. When an Adult CHDer is facing a possible heart surgery, he or she needs to ask several specific questions.

“What kind of tests do we need to do before the operation?” A surgeon isn’t going to open you up just to look around and see if he can find the problem. You’ll certainly have to have some X-rays taken, and quite possibly a CAT scan or an MRI. Your Cardiologist may even order a Catherization to get a good look at the heart structure.

“What exactly do you plan to do to me?” The answer is going to be based on what the results of the various tests are, plus the Cardiologist’s report on what is going on inside of your heart. A good surgeon has the operation planned out in advance, and he has a back-up plan in case there is a problem.

“How much experience do you have doing this type of operation?” A poster on the Adult Congenital Heart Association message board once stated that he needed to have a valve replaced. His aunt had recommended the surgeon who had performed her husband’s bypass surgery, and he was going to meet with him.

He’s getting off on the wrong foot already. What he needs is a Congenital surgeon, someone who has experience cutting into the heart. A Bypass surgeon doesn’t normally do that, so he is not the right person for this operation. And even though she means well, the aunt needs to be told just to leave well enough alone. When it is her health, she can make the decisions. Until then, no dice.

And don’t be alarmed if you find that the best Congenital surgeon for you is a Pediatric surgeon with adult experience. Most of the Congenital Heart Surgeries being done today are performed when the patients are children, so the children’s surgeon could be just the person for you… even if you are in your 30’s.

“Which hospital are you planning to use? How much experience do they have with this type of operation?” You’ll probably have to contact the hospital or the state health department to learn how much experience the hospital has with your planned surgery. Having the best surgeon in the world won’t do you any good if the Recovery Room staff can’t start an IV correctly. Make sure that they know how to care for someone who has had your type of operation. And once again, Congenital surgery and Bypass surgery are not the same thing, and competence in one field doesn’t always translate into competence in the other.

“What can I do to assist in my recovery?” Moaning in your hospital bed isn’t helping, and it is probably driving your roommate batty. Do something that will help you heal faster.

“When can I go back to work?” That’s your ultimate goal: to get this behind you and get your life back on track. You’ll be released from the hospital first, with lots of limitations. You’ll also have some informal exercises or perhaps a formal Cardiac Rehab program. Follow the doctor’s instructions! You’ll be able to do more, do it quicker, and won’t hurt yourself. And soon the answer to the “go back to work” question will be “Next week should be fine, if you take it easy.”

You won’t mind the boredom of your job; you’ve had quite enough excitement for a while!