Heart of a Father: Essays by Men Affected by Congenital Heart Defects has been released and is available from Baby Hearts Press (fourth book down) or Amazon!
July 25, 2009, Durham, North Carolina: Steve will be speaking at the Saving Little Hearts 3rd Annual CHD Symposium! It’s free, but they would like for you to register so they know how many are planning to attend. Register HERE!
On Disability Awareness Day 2007 at Boston’s Fenway Park, a young man with Autism was chosen to sing the National Anthem. (He’s standing at the microphone behind the catcher, the camera will focus on him in just a moment.) Halfway through the song, his nerves got the better of him and he broke out in a case of nervous laughter. Rather than boo him back to his seat, the 30,000 fans join in and help him finish the song!
When we all pull together, we can move the world.
It looks like they actually hit it.
Stem Cells have been discovered inside of embryonic hearts that may actually be the basis for all three kinds of heart tissue (the smooth muscle, the striated muscle, and the endothelial cells. (Cells that line the heart and all of the blood vessels). These cells contain a protien called Islet-1 that has been found before in embryonic mouse hearts, and recently researchers at Massachusetts General Hospital found them in human embryonic hearts. The initial hope is not that Islet-1 Stem Cells can be manipulated in to cures for various heart problems – you need a lot of Stem Cells to affect any portion of the body, more than the normal human usually has available – but that heart tissue can be grown as a template, and used to study the effects of various heart drugs.
An unexpected bonus is that these stem cells seem to be more prevalent in the areas of the heart that trigger Congenital Heart Defects. Obviously much more study is needed – researchers are years away from even a test of their theory – but this looks promising.
The news media, in case you ever wondered, rarely do a good job at reporting Medical News. Why? Several reasons.
The first reason is the average medical reporter is NOT a doctor. As an example, here’s a short article by WJRT-TV’s Leslie Toldo, titled “The Benefits of a Positive Attitude.” But this “health reporter” is really one of the station’s four meteorologists. The health and medical reporter for one of the popular TV stations in my area has a degree in Telecommunications.
Think about it: if medical reporters were actually medical professionals, they would probably be working in a medical field, correct? Often they just read a press release from a medical organization, re-write it in their voice, check to see if the organization can provide additional audio or visuals for the story (often they can offer an entire prepared package) and just run with it. No muss, no fuss… and very little fact checking.
That’s why a website named the Health News Review is so good. HNR takes stories that appear in the US National Media and analyzes them for accuracy. They applaud the good reporting and nail the bad reporting, such as this story which claims the three tests used – echograms, ultrasounds, and Cardiac CT scans – generate no radiation! That statement is completely untrue, as a CT scan zaps you with the radiation of 600 chest X-Rays!
So when you see or hear a medical report that you aren’t familiar with or just don’t understand, don’t take the report at face value. Check it out for yourself!
“NASA will never let you fly into space with a Heart Defect!”
Well, that’s what they think. Grab your helmet, we’re catching a ride on the Space Shuttle Discovery: STS-121, to be exact. Launched on July 4, 2006, we’re heading for the International Space Station!
We’re 3 minutes from launch, so lock that seatbelt down tight!
Yes it is!
I went to see the Dentist who specializes in Root Canals (Don’t ask me the medical name for that; some days I have difficulties remembering my own name!) and he examined me, took x-rays, talked to me about me heart and my general health. I was hopeful that with all those questions he’d say “We can get it done today if you wish!”
But what he said was “I’ll have my my staff schedule you in…” so I don’t get a fix until July 15! PHOOEY!
(Actually, I am very glad that he seems to be sure that he can save the tooth, I’m just not one to wait around – I want to get things done!)
The small, short item I posted yesterday (Overheard) led to a lot of comments and discussion on my Facebook page, much more than I ever anticipated. With that in mind, I did a little research to see if there were any studies of attitudes of Heart Surgery Survivors toward their scars.
Minimally invasive surgical techniques are still being developed, so the overwhelming majority of us have a scar. The two most common are the Sternotomy scar, which is the traditional scar in the center of the chest, and the other one is the Thoracotomy scar, which begins in the center of the chest, curves under one arm, and ends near the center of the back.
A 2005 study done in the United Kingdom asked patients with a Congenital Heart Defect (CHD) surgical scar to take part in a structured interview that would explore their attitude about their scars. 201 patients took part: 105 of them had a Sternotomy scar; 36 had a Thoracotomy scar; and 60 patients had both.
The study showed that roughly the same percentage in each group “reported that they did not like or hated their scar”: 22% disliked their Sternotomy scar, 25% their Thoracotomy scar, and 28% of those with both scars disliked them. 56% of the respondents said that their scars affected their choice of clothing but unusually enough, further study showed that a Thoracotomy scar was looked on less favorably by the patient. I found this unusual, as the Thoracotomy scars under my arms are easier to conceal. I rarely think about them – I am much more likely to button one more button of my shirt to hide the scar down the center of my chest. The study does not provide information about the male/female breakdown of the study, so I have no idea if that may be a factor. (UPDATE: A female survivor on Facebook commented that Thoracotomy scars affected her choice of bras. Obviously a male would never consider that!)
A 2006 Canadian study of adults with Congenital Heart Defects established a similar result. 58% of the respondents saw themselves as “disfigured,” but 60% said that the scarring did not bother them as much now (At the time of the study) as it had during their younger years. 19% felt negatively about their scar, 22% felt positive, and 58% were neutral. And 61% of the participants “reported a positive effect on appreciation of health.”
Heart Surgery survivors – and everyone else – fall into the “Beautiful = Better” trap when we are young. But as we age, we seem to be able to come to grips with what we’ve been through and what those gashes on our chests really mean. We may never have the attitude of the soldier mentioned in Shakespeare’s Henry V – “Then will he strip his sleeve and show his scars, and say ‘These wounds I had on Crispian’s day.’”
But we know who we are, and we understand what we’ve been through. We are, literally, a Band of Brothers and Sisters: “We few, we happy few, we band of brothers; for he to-day that sheds his blood with me shall be my brother.”
Person A: “She says she never noticed my scars.”
Person B: “She noticed. She just realizes that her Knight has had to fight a few dragons along the way.”
What follows was written by Stephanie to Heather Magee, before Heather underwent a surgical procedure last year. (If you missed it, Heather is recovering nicely. I saw her while in Colorado, she looks good but says she is still a little weak.)
Stephanie, also a Heart Warrior, sent this note to Heather about getting through an operation and what comes next. Heather wanted me to share it with Funky Heart readers:
I can understand the fear and doubt that races through your minds about the actual surgery. The surgery is not the problem. It’s the aftermath. It’s the emotional part of having Heart Disease. Be prepared to NOT be afraid to ask for professional help. Maybe before surgery reach out to others to see how they have gotten through it.
Be patient with your body. Your mind is always going to move faster and be ready for more than your body may be able to handle, which is beyond frustrating. However, you may discover a new hobby this way. Try to find a way to turn your negatives into positives. But please know that you are not alone if you are having suicidal thoughts, are extremely irritable, or have days where you see no point of getting out of bed. Do not be afraid to ask people to leave you alone, just to be nice. This is a time to heal physically, emotionally, and spiritually. Stress is harder on our hearts than we often think.
Be thankful you have had such a strong heart up to this point. After surgery, you will only be stronger. Never give up hope for tomorrow. Always be thankful for yesterday. Overall, please do one thing for me. Have a moment to yourself where you are standing in front of the mirror naked, with the lights on, and really look at your body. Even if you are crying, and your stomach is twisting, force a smile to your beautiful face, look into those survivor’s eyes and say “I am beautiful. I am in fact a Heart Disease Survivor.”
Smile.
Commonwealth Care, the grand experiment in Mandated Health Care administered by the Commonwealth of Massachusetts, isn’t doing so well. So the administrators of the plan are being forced to cut $115 million dollars from the plan. One of the ways they plan to “save money” is to slow enrollment. If you qualify for coverage but forget to choose a health plan, no longer will one be chosen for you. You’ll just be dropped. The Governor wanted to “help” by canceling dental coverage, but the legislature shoved that back in. They have a better plan: eliminate coverage for 28,000 legal Immigrants. Hey, why not, that’ll save $130 million dollars!
Limiting access and cutting benefits sounds a lot like healthcare rationing… rationing? Under the Massachusetts system, one of the nationalized healthcare plans that President Obama says could save us all by fixing our broken health care system? No way, the Ghost of Paul Revere would rise from his grave and ride again before that happened!
It happened… and there is a 25% sales tax increase, too. Welcome to Massachusetts!
Meanwhile, over at the local Veterans’ Administration (VA) hospital (another example of Universal Healthcare) no one seems to be really sure what is going on. Four hospitals seem to have forgotten how to sterilize their equipment, leading to 46 new cases of Hepatitis and six patients testing positive for HIV. Even after repeated alerts from the VA itself and numerous media reports, fewer than half of the VA’s facilities could produce evidence of proper sterilization procedures or training during the “surprise inspection” that a blind veteran could see coming. Ninety-two veterans at a VA Cancer Clinic in Philadelphia also received incorrect Cancer treatments over a space of six years.
And as already mentioned on Funky Heart, The Indian Health Service is another example of a failed government run healthcare system. Back in 1787, the United States Government promised to provide healthcare to Native Indians on their reservations, and current statistics show how well we’ve respected neglected our obligation: The 2nd lowest life expectancy in the Western Hemisphere is among men living on Indian Reservations in South Dakota.
So America, here are three examples of centrally administered healthcare, involving the Federal Government on a national scale (twice) and a state run mandated healthcare system. Are you sure this is what you want?
Make your decision carefully – because you can’t put this genie back in the bottle.
Duncan Cross’ new patient blog carnival, “Patients for a Moment #2” stops by Adventures of a Funky Heart! to read Heart of a Warrior. Duncan just got Patients for a Moment up and running a few weeks ago, and he’s hopeful it can become just as important and influential as Grand Rounds or Change of Shift. Swing by his blog and read some great blogging from the patient point of view.
I have to apologize to Duncan and all his readers, Funky Heart was included in Moment #1 but I didn’t even acknowledge it. It’s pretty easy to get distracted when your tooth is giving you fits! Sorry, Duncan!
