Help with a speech?

[RossGurlie]

Hey you guys! I wanted to come here to ask for help. I'm part of the speech and debate team at my school. Well, I participate in an event called 'Original Oratory', or OO as we speech nerds say. :] It's an event where you're encouraged to talk about something that you feel strongly about. Most people choose a cliche topic such as first impressions or materialism. Last year my OO was about younger siblings being held to the same standard as their older brother or sister (my eldest brother is a super genius). This year I have decided to talk about congenital heart disease. After all, it is very important to me! I'm mainly going to be focusing on the lack of funding for research and the potential lives we could save if we only knew more. Throughout the speech, I was wanting to add quotes of people (you guys) and your thoughts on this issue. I've started my speech already and have the intro mostly done, but still need to do a lot of work on it. Our first speech tournament is September 7-8, so I still have time. If any of you guys would be willing to type a sentence or short paragraph (there's a limit to how many words I can quote) about your view on this topic, that would be so great! Thanks!

 

[hensylee]

what a great idea! I can't help because mine is not from birth but we have lots of members who have congenital issues with heart and they can give you a mountain of quotes - lots of them have quotes under their names,. Come on, members, lets give Rossgurlie as much info as she needs/wants and then we can all share her winning the tournament. Good luck.

 

[tobagotwo]

Please use the Advanced Search feature of this site to look up relevant threads and information. Also page through the Reference Sources forum, and New Advances.

Heart Research is actually pretty well funded, whether we all agree where the funds should go or not. There's money in drugs, medical devices (like stents, heart wall patches), and new procedures. That generates research.

You might consider something that is very often overlooked, and that is the aftercare of heart patients. For that, you may want to look at the Anti-Coagulation forum and the Post-Surgery forum.

There are many issues in the types and amounts of prescriptions, and the resultant, rampant quality of life issues that are swept under the rug, as well as the medical community's general nonchalance about these issues.

Then there's the criminal lack of general knowledge about anticoagulation (Coumadin, warfarin). The lack of attention by physicians to women's heart complaints, and the unconscionable delay in determing the critical differences in female and male heart disease and symptoms.

There's always the prescribing of off-label prescriptions that make heart patients medical guinea pigs (such as prescribing statins to tissue valve owners to extend the valve life, which has since been shown to be entirely ineffective). When is it a genuine attempt to help the patient, and when is it from being led down the garden path by people who appear credible, but may have other motivations, such as increased sales of Lipitor or similar?

Or you could write about insurance companies that declare that all heart valve patients are unisurable, although the AHA has published followup results saying their lifespans are not affected by it. (By the way, be sure that you are never uninsured for even a day. When you must transfer off of your parents' insurance due to age and completion of college, COBRA it until you can get insured elsewhere - both life and health.)

Best wishes,

Best wishes,

 

[Lynlw]

Actually Congenital Heart Defect Research is VERY underfunded. for example twice as many children die from CHDs as ALL forms of pediatric cancers COMBINED,yet funding for ped cancer research is FIVE times that as CHD researchfunding. I don't know if you've checked wwww.childrensheartfoundation.org but all they raise money for is CHD research, actually We are doing a walk in Sept in Philly that the money is split between the CHF and another CHD org www.tchin.org
Their site has alot of info. I don't know if you belong to the forums at the adults w/CHD org but they could probably gve you lots of quotes http://www.achaheart.org/ I Think I've seen you there, but if it hasn't been since they redid the site, you may have to reregister.
THIS is one of my passions, The American Heart Association has alot of CHD families raisng tons of money for them, in hopes it will help their child or other kids in the future, BUT according to their own reports less than 1 penny out of every dollar raised goes to CHD research. Actually 21 percent of their budget goes to research and of that 21%, 8% goes to CHD BUt even that is misleading since they "count' sickle cell research, obese children, the affects of chemo on the heart as "CHD research" which are all important , BUT NOT CHD.
Good Luck, let us know how it goes. Lyn
PS another BIG problem, is Doctors and everyone else thought many CHDs were 'cured' after surgeries and released the patients from their care, well they are finding out that CHD people have other problems that come up as they get older because of their CHD so everyone should continue to go to their ped card then move on to doctors that specialize in adults w/ CHD,but most people don;t know they should be going to specialized doctors and their doctors don't tell them.So by the time they to get to a Adult w/CHD doc or even a heart doc at all, their hearts are pretty bad because things weren't caught early. TheACHA has been lobbying congress for a CHD registry to see eactly how many people have CHD and what thelong term effects are and other things like that

 

[Arlyss]

The bicuspid aortic valve, the most common congenital heart defect, has received little/no attention from the congenital heart community, which until quite recently focused on those requiring surgery in infancy and childhood. No doubt that is because even when found in infancy or child hood, BAVD may not require any intervention. It can, however, take young lives due to endocarditis. BAVD seems to masquerade as a deceptively simple condition, which it is not. Here is a link regarding that http://bicuspidfoundation.com/The_View_From_Here_-_May_2007.html

At times BAV and associated complications such as the stenosis that RossGurlie had may force intervention at a young age. But rarely are the consequences of BAVD appreciated. In some individuals it can have severe consequences over a life time, which we are discovering with my husband. While we are very grateful for surgery, it does not "fix" a genetic deficiency that progressively expresses itself over time. BAVD has seriously threatened my husband's life 5 separate times up to this point, and no one can tell what may be ahead for him.

Here are papers that may be of interest

http://www.ncbi.nlm.nih.gov/sites/e...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=12922988

Best wishes,
Arlyss

 

[Lynlw]

The bicuspid aortic valve, the most common congenital heart defect, has received little/no attention from the congenital heart community. It can masquerade as a deceptively simple condition, which it is not.

At times BAV and associated complications such as the stenosis that RossGurlie had may force intervention at a young age. But rarely are the consequences of BAVD appreciated. In some individuals it can have severe consequences over a life time, which we are discovering with my husband. While we are very grateful for surgery, it does not "fix" a genetic deficiency that progressively expresses itself over time. BAVD has seriously threatened my husband's life 5 separate times up to this point, and no one can tell what may be ahead for him.

Here are papers that may be of interest

http://www.ncbi.nlm.nih.gov/sites/e...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=12922988

Best wishes,
Arlyss

You know I bring up BAV often when we are talking about stats on CHD groups. The most used number is 1/100 have CHD,which makes absolutely NO sense when 2% of the pop has BAV. But for some reason the powers that decide these things, only count CHD in the stats that were found in the first month of life OR if something is found in the first year that requires intervention that is counted.
Many of the CHDs aren't detected for years, just here how many people didn't know they had a problem until they were adults? I would LOVE if they would count ALL CHDs I think maybe that would help alot with funding if people realized how many people have CHD.
ok off my soapbox.I'll stop before i get heated lol

 

[Arlyss]

We live in a medical world of classifications and groupings that may not work well in relationship to what families and individuals actually experience. I hope it will continue to evolve to better meet the needs of individuals and families.

I was surprised when I read in the medical literature that until recently those who had surgery as infants/children were considered "fixed" by surgery and not followed. That is not true, as Lyn has mentioned - those with congenital heart conditions are "repaired" but not "cured" by surgery. So, there are a few programs called Adult Congenital Heart Disease specialties now - but the focus remains on these individuals who had surgery in infancy/child hood.

It is quite amazing that the most common congenital heart condition, BAV and its associated aortic aneurysm, aortic coarctation, and other complications in the body, including increased risk for brain aneurysm - which is now being more widely recognized as a complex condition - still is largely unaccounted for when it comes to subspecialization.

Best wishes,
Arlyss

 

[Lynlw]

Arlyss, I know you are incrediabley busy, but have you ever thought about joining the ACHA forums? I think your knowledge could be very helpful to some of the members there.Lyn

 

[briansmom]

My son had an aortic dissection, probably caused by a connective tissue disorder. Pediatric cards completely dismissed his chest pain. His dissection caused a massive MI and permanent heart damage. He had the Thoratec Heartmate II LVAD (left ventricular assist device) for 9 months. This heart pump saved his life. He may well need a heart transplant at some point. All damage could have been avoided if they had caught the dissection in time.

 

[Lynlw]

My son had an aortic dissection, probably caused by a connective tissue disorder. Pediatric cards completely dismissed his chest pain. His dissection caused a massive MI and permanent heart damage. He had the Thoratec Heartmate II LVAD (left ventricular assist device) for 9 months. This heart pump saved his life. He may well need a heart transplant at some point. All damage could have been avoided if they had caught the dissection in time.

Wow I never realize before the docs were ped cards, that is really scarey.Didn't they even do an echo?

 

[blessed1416]

Rossgurlie,
The teacher in me just had to respond to your post. Let me give you a few of our family's statistics and let you decide if our heart disease is congenital or not. I am one of 12 first cousins. One died at the age of 26 while undergoing a minor surgery - heart attack (female). One is blessed to have a transplanted heart of a 17 year old girl - his new heart is now 6 years old. Four other cousins (1 female, 3 males) have had 1-2 bypass surgeries.
Our grandmother and grandfather both died of heard disease and all of their 6 children (our mothers or fathers) died of heart problems. Then, there is me. So out of the 12 cousins, 7 lives have been greatly altered because of our weak hearts. We all have a special bond with each other. We do not take life for granted and we try to live each day as if it were our last. So, we actually see our inherited diease as a blessing. If our grandparents and parents had lived in the day and time that we do, they would have had a better chance at survival. We are indeed very thankful to have wonderful doctors and modern technology. However, the one blessing that all of our family has(had) is a God who has control over every detail of our lives- especially our hearts. God bless you and good luck with your speech!! Gail

 

[gijanet]

Hi, RG!

Hi, RG!

I'm not sure exactly what you are looking for. Is CHD research seriously underfunded? Yes, it is. This repeatedly comes up on the ped heart groups (naturally!) and many of us are extremely frustrated at how little of the collected monies for the AHA's Jump Rope for Heart event actually goes to CHD research, yet they often feature children in much of their literature. A bit hypocritical, I'd say. AS an offshoot of this, data is often lacking or very outdated - studies, too, of course - on many of the syndromes that also encompass heart defects. Take my daughter's heterotaxy syndrome, for example. Try googling that, or left atrial isomerism (also known as polysplenia) or right atrial isomerism (also known as asplenia or Ivemark's after the guy who discovered it). Statistics are outdated and very dreary. In one Canadian study, there was only a 49% survival rate at age 15. Pretty disturbing, huh? EVen our first cath doctor (jerk!) told us that Katie would be lucky to make it to age 5. Well, despite five surgeries by age four and one-half, Katie is quite alive and driving me insane. She is creative, funny, cute, and very active. People are amazed when they find out that this little girl's innards are so messed up. No one can tell us what the long term effects of having two bi-lobed lungs will have. No one can tell us how long Katie's heart can continue to exert the extra energy required in a fontan circulation. There is a study out of Baylor and Texas Children's studying laterality defects, but more funds are needed. I would do anything to keep a child and her parents from going through this. If research could indicate what couples are at risk for having a child with CHD or if they could somehow alter the genetic code causing CHD slightly to where it didn't produce a defective heart, that would be money well spent, don't you think? Just think how much money (and pain and lives) could be saved if scientists could identify exactly what causes congenital heart defects and find a cure!!! And again, as an offshoot, right now there are experimental surgeries to correct HLHS while in the womb, and some have been successful. Pretty amazing, huh? Funding for this comes from somewhere...........

Bob is right. Do an advanced search and you will come up with several theads that might help you. Here is one, but there are many more.http://www.valvereplacement.com/for...21502&highlight=common+atrioventricular+valve

Hope you get what you need for your report. If not, give us a shout and we can help further. Hugs. J.

 

[RossGurlie]

Thanks!

Thanks!

Thanks so much for all of the responses! I'm taking in all of this info and trying to sort out what exactly I want to use in my speech. I have emailed my cardiologist and she forwarded my email to the head of all Pediatric Cardiology and head chair of CHD Research for Texas Children's Hospital! Needless to say, that was so me GREAT information! :] Do any of you guys mind if I quote you?

Cailey

 

[BDMc]

Our Future Champion?

Our Future Champion?

Cailey, What a great thread you got going here! My surgeon told me he thought my heart troubles were congenital, but was unable to give a clear diagnosis. Nobody noticed more than a murmur until I was 29. He said it might have been Marfans syndrome. I mention this because the doctors were all (about 50) mystified, and to this day nobody knows what the source of my heart problems were! So I am thrilled by your speech topic! You are doing us all a great service! While I'm late getting on board, I want to thank, and encourage you! I think you will do a great job championing a cause close to all our hearts! All the best, Brian