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Webinar Topic: Congenital Heart Disease – What Patients Need to Know

Fri. Feb 13, 2015 at 12:00 pm CST

During this one-hour interactive webinar, Drs. Joseph Dearani and Carole Warnes will provide an overview of congenital heart disease, including transition of care into adulthood, pregnancy, surgical risks, valve repair or replacement, innovation, and lifelong follow-up. A question and answer period will follow the presentation. Speakers Include Mayo Clinic Physicians: - Joseph A. Dearani, M.D. - Carole A. Warnes, M.D. Would you like to: Request An Appointment Learn More About Congenital Heart Disease


Tags: webinar, Congenital Heart Disease, heart

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michelle39

Michelle39 wrote:

My 15 yr old son has Ebstein's Anomaly. He is 10 months post cone and maze procedure, and doing very well. We had his last appointment with his cardiologist a week ago, echo was all good, ECG not even as [...] View full text  

Posted Sat, Feb 14 at 6:55am CST

lauragreyna

lauragreyna replied:

Hello



İ am a woman 52 years old with EA 

İ understand, your worries about a bew cardiology but, as your son is turning yo be an adult, He needs a Dr. who is specilized in adults.

 

Do not worry, life with EA is different than the others life! But let me tell you, we enjoy and appreciate every moment as a gift from Heaven.

 

You have to tell your son that He has to attend school! That one day He will have a family, and He will need a good job! 

 so school has to be important for him, maybe  we can not do many things as we get tired!  but our brain is perfect.



Tell your Son that we people with EA are winners!  and yes we can not do many things, as others can do.

 

 thanks  Laura

Enviado desde Samsung Mobile

Posted Sat, Feb 14 at 8:06am CST

jbell22

Jackie Bell wrote:

I am a 54 year old female who has just been diagnosed with a right-sided aorta and Kommerelis Diverticulum. I have been a very high functioning athletic woman but now cannot do very much. My symptoms are breathlessness, body tingling, [...] View full text  

Posted Fri, Feb 13 at 2:39pm CST

acarling

Andon Carling replied:

From Dr. Joseph Dearani: Surgery is usually recommended for this, particularly if there is an aneurysm at the base of the duct of K. Imaging needs to be reviewed to know what would be best. Risk of surgery is low and results are very good.

Posted Fri, Feb 27 at 9:18am CST

somerg

somerg wrote:

The melody valve for pulmonary valve replacement only has a limited range of sizes available. What is the likelihood that more sizes will be available for patients who need a broader range of sizes, such as those who currently have [...] View full text  

Posted Fri, Feb 13 at 1:12pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: I think it is possible with all of these transcatheter valves that different sizes and improved technology will allow the valves to be more broadly applicable within the next three to five years.

Posted Fri, Feb 20 at 9:14pm CST

If a patient has a malfunctioning mechanic valve what is likelyhood, you would replace it with another type of mechanical valve or would you put in a different type of valve ?

Posted Fri, Feb 13 at 1:03pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: If a patient has a malfunctioning mechanical valve which does not respond to appropriate anticoagulation therapy, then it may need to be replaced. Depending on why the mechanical valve was malfunctioning, it is possible to replace the valve with a tissue prosthesis and if you are in normal rhythm, it may be that you might not require anticoagulation. The decision needs to be made on things like how many operations you had in the past, whether this was an old type of valve more prone to dysfunction, or whether there was an issue with maintaining optimum anticoagulation that caused the mechanical valve to malfunction.

Posted Fri, Feb 20 at 9:13pm CST

pattys

pattys wrote:

For ACHD patients,VSD, Eisenmenger's, PH: I question other routine screenings such as Colonoscopy etc, going under anesthesia is something my Congenital heart cardiologist(Dr. Warnes) warns me about. Do we still do these? And under the supervision of who present? Thank [...] View full text  

Posted Fri, Feb 13 at 1:01pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: For congenital heart patients with Eisenmenger syndrome, yes it certainly is possible to do screening such as colonoscopy. Depending on how blue or “cyanotic” you are, however, having an anesthetic can be problematic and we usually recommend that the procedure is done with very careful sedation, sometimes using our cardiac anesthesia colleagues to make sure you do not drop your oxygen saturation and to make sure the procedure is a safe as possible. This is not a procedure we recommend doing in a center where congenital cardiac expertise is not available.

Posted Fri, Feb 20 at 9:13pm CST

I have the genetics for a high risk of Hemochromatosis, my sister has already overloaded with iron, and mine is at the high end of normal. As you know the treatment is bloodletting. Do I have to worry about clots [...] View full text  

Posted Fri, Feb 13 at 1:01pm CST

janetbauer

Janet wrote:

Thank you Doctors. You are wonderful!

Posted Fri, Feb 13 at 1:01pm CST

sagebrush83328

Faye Lewis wrote:

Thank you for time. Dr Warnes saved my life.

Posted Fri, Feb 13 at 1:00pm CST

Anonymous wrote:

I have moderate to severe aortic stenosis and an ascending aortic aneurysm at 4.4 cm. Would it be possible to repair the valve and the aneurysm during the same surgery?

Posted Fri, Feb 13 at 12:58pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: With aortic stenosis and an ascending aortic aneurysm, yes it is certainly very possible (and frequently done) to replace the valve and the dilated part of the aorta during the same surgery. This may not be necessary now if the aortic stenosis is not severe, but generally if the valve is being operated upon and the ascending aorta is 4.5 cm or larger, the aorta would be replaced at the same time.

Posted Fri, Feb 20 at 9:12pm CST

macman1425

BOSC wrote:

my chd was diagnosed late in life - I have now been told I have what is called eisenmengers syndrome. can you explain exactly what this is

Posted Fri, Feb 13 at 12:57pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: Eisenmenger syndrome is a condition named after Viktor Eisenmenger who first described it many years ago. Your congenital heart specialist should explain this to you carefully. Basically it usually involves being born with a hole in the heart connecting the left and right circulations. This may be an atrial septal defect or a ventricular septal defect and it allows blood from the high pressure side (the left ventricle) to enter the right sided circulation and raise the pressure in the right ventricle and the lungs. When the pressure in the lungs goes up, this is called “pulmonary hypertension” and this then reverses the shunt so that blue blood is shunted backwards into the left side of the circulation produces “cyanotic heart disease” meaning that the skin gets a dusky blue color.

Many therapies are now available to treat this condition to help to lower the pulmonary pressure which improves exercise capacity and quality of life. There are many important issues related to the “syndrome” which you should completely understand. Your congenital cardiologist should explain all of them to you so you have a comprehensive understanding what the situation is.

Posted Fri, Feb 20 at 9:11pm CST

Anonymous wrote:

Is there a limit to the amount of homografts you can receive in a lifetime, or is it more dangerous the more you have? My 29yo son (DORV, Taussig Bing anomaly) is due for 3rd pulmonary homograft. Has had 6 [...] View full text  

Posted Fri, Feb 13 at 12:55pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: There is not an absolute limit to the number of homografts you can have in a lifetime but every kind of open heart surgery carries a slightly increased risk. Homografts may not last long as other kinds of tissue prostheses and it may be that a different kind of biological valve could be considered. Sometimes in an effort to avoid another operation if there have been many, in the future, a mechanical pulmonary valve may be considered but this requires lifelong anticoagulation (blood thinners) so the risks and benefits have to be considered in each individual case.

Posted Fri, Feb 20 at 9:10pm CST

acarling

Andon Carling replied:

From Dr. Joseph Dearani: While there is no limit per se, the risk generally goes up quite a bit when you are at the 5th sternotomy and beyond. It depends what valve(s) need attention and what the function of the heart is.

Posted Fri, Feb 27 at 9:17am CST

Thank you for answering my question regarding possible surgery for a Left Circumflex Anomalous Artery, Mycomatous Mitral Valve, etc. issues...my research also tells me that Dr. Dearani, who answered my question, is a congenital cardiac surgeon. What is the process [...] View full text  

Posted Fri, Feb 13 at 12:52pm CST

alexsimon

Alex Simon replied:

HI Cynthia -
You can make an appointment by clicking on the Request An Appointment link under the video player on this page. Please let us know if you have any questions. Thank you, Alex

Posted Mon, Feb 16 at 8:36am CST

judytru

JudyTru wrote:

My daughter was born with coarctation of the aorta and aortic stenosis. She is now 26 years old. At 3 months, correction of the coarc as well as an aortic valve repair was done by Dr. Perryman at Jackson Memorial [...] View full text  

Posted Fri, Feb 13 at 12:51pm CST

acarling

Andon Carling replied:

From Dr. Joseph Dearani: It is not clear to me what valves are dysfunctional right now. In general, this is a complex situation and probably an open procedure will be necessary. With that said, there are some problems that can be managed with a catheter valve. The data would need to be reviewed to know for sure. If you are interested in further discussing, please call 507-255-2034.

Posted Fri, Feb 27 at 9:16am CST

deborapetersson

Debora Siart wrote:

My husband is 32 years old and was operated in Mayo Clinic at the age of 13 because of Ebstein anomaly. We live in Germany and his cardiologist is planning a catheter operation to replace his biological porcine prothesis because [...] View full text  

Posted Fri, Feb 13 at 12:49pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: The biological valves in the tricuspid position do degenerate with time, usually after about 15 or 18 years and it may be that this has happened in your husband with his tissue prosthesis. The valves can be replaced using a catheter procedure but alternatively another operation to put in another valve could be performed. The decision about one intervention versus another has to be individualized. The long term durability of tissue prostheses (about 15-18 years on average) versus the new catheter valve have to be considered. Certainly we have many patients who have had a reoperation to replace the tricuspid valve for a second time and this is an alternative which could be considered versus a catheter procedure.

Posted Fri, Feb 20 at 9:09pm CST

kelovich

Kelly wrote:

My 5 year old adopted daughter was diagnosed with a PDA after birth, which we were told had closed on it's own by the time she turned one (she was followed with ECHO's every 3 months until it showed that [...] View full text  

Posted Fri, Feb 13 at 12:48pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: If the PDA really closed and there are no residual problems, i.e. the heart function is normal and there are no residual murmurs, then she may be in the happy situation of never having to think about it again. A PDA is one lesion that, when it is closed, if there are no residual problems, it can be forgotten about.

Posted Fri, Feb 20 at 9:08pm CST

Anonymous wrote:

With regard to 3 month old with right anomolous artery will she have to also go through CS during pregnancy

Posted Fri, Feb 13 at 12:47pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: Most patients with an anomalous right coronary artery never require surgery. Frequently it is found incidentally because a CT scan has been performed for another reason. It is only when patients have symptoms or high risk features that surgery is necessary.

Indeed it has been estimated that there may be more than half a million Americans with an anomalous right coronary and so generally, for the majority the prognosis is excellent.

Posted Fri, Feb 20 at 9:07pm CST

kwittich

Kelly W. wrote:

Do you have an opinion about whether the Fontan should be delayed as long as tolerated post Glenn to delay the "clock" on the inevitable end-organ complications or done as early as possible to improve oxygen saturation as soon as [...] View full text  

Posted Fri, Feb 13 at 12:46pm CST

nataliebushaw

NatalieBushaw replied:

Kelly, our son had his Glenn at 4 months and his Fontan (fenestrated) at 3 1/2. His sats were then and have always remained 78-84 due to some pressures and other barriers with his anatomy but he has done very well (nearly 12 now).

Posted Fri, Feb 13 at 12:52pm CST

acarling

Andon Carling replied:

From Dr. Joseph Dearani: I think anytime between 2 and 4 years of age is ideal. The oxygen saturation is usually the driver in terms of timing. Most like the extra-cardiac conduit technique so doing it closer to 3-4 usually allows an adult size tube graft to be utilized.

Posted Fri, Feb 27 at 9:14am CST

Anonymous wrote:

9 month old diagnosed with TAPVR, surgery done but now has artery narrowing, will be having surgery at the end of the month in Boston to open the narrowed artery. What is the probability of an occlusion or re-narrowing after [...] View full text  

Posted Fri, Feb 13 at 12:45pm CST

acarling

Andon Carling replied:

From Dr. Joseph Dearani: It sounds like the problem is pulmonary vein stenosis. This can be a difficult problem. There are some surgical procedures that can be very effective in relieving the problem. However, there can also be recurrences. Boston is quite experienced and will be able to comment on these questions more specifically around the time of surgery.

Posted Fri, Feb 27 at 9:13am CST

Anonymous wrote:

I am 33 and I was diagnosed with a vascular ring and had the "repair" surgery when I was 29. I have had little to no relief since the surgery. (I had no symptoms until I was 28). There is [...] View full text  

Posted Fri, Feb 13 at 12:44pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: I think it should be determined why you have residual symptoms and if there is residual airway obstruction and how severe it is. Usually one surgery is sufficient to relieve the symptoms. Only if your airway is severely obstructed is it likely to affect the baby but all of this should be discussed with your adult congenital heart specialist.

Posted Fri, Feb 20 at 9:03pm CST

caleynkids

caleynkids wrote:

My 1 1/2 year old son has Ebstiens Anomally of the tricuspid valve and WPW. He has been on Propanolol since 2 months after birth. When should we be looking at ablation? He also has an atrial septal defect. Will [...] View full text  

Posted Fri, Feb 13 at 12:43pm CST

acarling

Andon Carling replied:

From Dr. Carole Warnes: The decision about surgery on Ebstein’s anomaly is based on a number of things, particularly on the degree of tricuspid regurgitation (leaky tricuspid valve) and how big the right ventricle is and whether or not it is dysfunctional. Symptoms also have to be considered. The atrial septal defect typically does not get larger but at 11 ½, it is very unlikely to close on its own. Patients with an atrial septal defect tend to have more limitation than those without since they may shunt blue blood back into the left side of the heart with exercise and the lack of oxygen in the body circulation usually is associated with more symptoms. If there is WPW, this can be addressed with an ablation procedure before surgery, sometimes it is dealt with at the time of surgery.

Strokes are not very likely to happen in Ebstein’s patients, but when there is an atrial septal defect, there is always a chance that a clot in the right-sided circulation (for example in the leg veins) could cross the atrial septal defect and get into the body circulation and go to the head and cause a stroke. Would recommend that he be seen in a center where there is considerable expertise in Ebstein’s anomaly.

Posted Fri, Feb 20 at 9:05pm CST