Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Hi Marilyn, I'm not a nurse but yes, valve abnormalities cause heart murmurs. I know this because Jack has pulmonary & tricuspid regurgitation following his repair. It's like a pay off---they fix the defects but you're left with other smaller problems He also still has some pulmonary stenosis and this causes a murmur as well. Jack's heart has " whooshing " sounds but I can't remember if this is the leaky valves or the stenosis-- I think it's the leaky valves. He also has what they call a " thrill " . This is where you can feel his heart vibrating when you put your hand on his chest and you can actually see his heart beating beneath his chest at times. His murmur is described as 3/6 systolic and 2/4 diastolic. This was a year ago at his last cardiac check-up. I hope you get some answers really soon. It's such a worry. I'll be thinking of you all. Take care Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 You know Marilyn, Roy has a similar attitude before a diagnosis. I think and ponder and research. It is not that he is not worried, it is that it is another one of those things that he can't fix for his kid and he will not allow himself to even think of a bad possibility. He doesn't want to talk about options with me or anything. Then when a definite dx is made, he is great. Accepts it and moves on to what can we do now. Here's praying for your peace of mind. Kim ---------- > >To: <CHARGE > >Subject: heart question >Date: Tue, Jun 4, 2002, 7:46 PM > > Any of our list nurses out there trained in heart sounds? Would there be > any recognizable " sound " associated with blood " backflowing " through > valves? Or does something like that go undetected until an echo is done, > because it i just the valves closing too slow? (If that is what causes > it.) I know that doctors always noted had a murmur until the ASD > and PDA closed, so I know an actual opening between chambers, etc. results > in the murmur. (In fact a home nurse, who said she wasn't technically > trained in heart sounds, could tell 's ASD was fairly large because > she could identify it!) Do valve problems create similar sounds? No one > has every said anything about strange heart sounds since she was cleared by > cardiology - and she's seen plenty of doctors since then, God knows. > Whew, am I worried now! I keep thinking we - and the doctors - have been > missing a major problem all along. Just when we thought things were about > as resolved as things could get for 's health problems - whammo! > Pray for my peace of mind and nerves to make it until that report arrives. > (Rick, of course, is fatalistic: " Can't do anything about it by worrying > yourself to death. " ) I just want to know one way or the other. I HATE > suspecting something but not knowing. > > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of the Rarely Rattled Rick! > Indianapolis, IN > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Marilyn when had her repair did they remove a value or did they tell you that a specific value was not fully functioning? My Vicky had tetrology of Fallot repaired and at the time of surgery they removed her pulmonary value because it was essential useless. Since she does not have that value she continues to have a significant murmur because the value's job is to prevent backflow. Murmurs are heard anytime the blood is not flowing " correctly " ie when a value is missing or is not closing all of the way. This is a fairly common occurance and the doctor's may not have said anything figuring that you already knew of this murmur. The sound that is heard with ASD and/or VSD sounds like a train, it is easily audible. Value murmurs are not as easily audible but can still be heard even by a nurse who is not trained on various heart sounds. Please let us know what happens, and I will definately keep you and your family in my thoughts and prayers. Chris mother to Vicky (CHARGEr 2 3/4 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Marilyn when had her repair did they remove a value or did they tell you that a specific value was not fully functioning? My Vicky had tetrology of Fallot repaired and at the time of surgery they removed her pulmonary value because it was essential useless. Since she does not have that value she continues to have a significant murmur because the value's job is to prevent backflow. Murmurs are heard anytime the blood is not flowing " correctly " ie when a value is missing or is not closing all of the way. This is a fairly common occurance and the doctor's may not have said anything figuring that you already knew of this murmur. The sound that is heard with ASD and/or VSD sounds like a train, it is easily audible. Value murmurs are not as easily audible but can still be heard even by a nurse who is not trained on various heart sounds. Please let us know what happens, and I will definately keep you and your family in my thoughts and prayers. Chris mother to Vicky (CHARGEr 2 3/4 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Marilyn when had her repair did they remove a value or did they tell you that a specific value was not fully functioning? My Vicky had tetrology of Fallot repaired and at the time of surgery they removed her pulmonary value because it was essential useless. Since she does not have that value she continues to have a significant murmur because the value's job is to prevent backflow. Murmurs are heard anytime the blood is not flowing " correctly " ie when a value is missing or is not closing all of the way. This is a fairly common occurance and the doctor's may not have said anything figuring that you already knew of this murmur. The sound that is heard with ASD and/or VSD sounds like a train, it is easily audible. Value murmurs are not as easily audible but can still be heard even by a nurse who is not trained on various heart sounds. Please let us know what happens, and I will definately keep you and your family in my thoughts and prayers. Chris mother to Vicky (CHARGEr 2 3/4 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 I am not a nurse either, but just came from Katelyn's cardiology apt on the 15th of May. I had that exact same question for her cardiologist. Katelyn had a VSD repaired and a muscle mass that closing off flow of the blood removed and one of her openings with the valves was to small, so they enlarged it. At her apts in the past they have told me that she has a heart murmur but it keeps gets better, that they can hardly hear it anymore. So, of course the first question was what is causing it, why is it there now and will it cause her problems all in one breath. I'm not sure if it is the same thing as 's, but the murmur in Katelyn is caused by the backwashing of blood. It is because one of her valves is too small for the opening and her cardiologist told me that 5-10% of the blood flowing from the heart to the lungs is not getting to the lungs, but is being backwashed back into the heart. So, 90-95% is getting there to the lungs. But it is the backwashing that is causing the murmur and told me that this will not cause her any ill effects. He told me that he has some patients that don't have a valve at all and do fine, so Katelyn is way ahead! They still keep an eye on it and making sure that the muscle mass is not growing back every couple years with an echo. Katelyn will have to have first echo in three years next year before her apt. I hope that I helped a little. Roxanne mother to Katelyn 5(CHaRgEr), Kristopher 3 and wife to Don. > Any of our list nurses out there trained in heart sounds? Would there be any recognizable " sound " associated with blood " backflowing " through valves? Or does something like that go undetected until an echo is done, because it i just the valves closing too slow? (If that is what causes it.) I know that doctors always noted had a murmur until the ASD and PDA closed, so I know an actual opening between chambers, etc. results in the murmur. (In fact a home nurse, who said she wasn't technically trained in heart sounds, could tell 's ASD was fairly large because she could identify it!) Do valve problems create similar sounds? No one has every said anything about strange heart sounds since she was cleared by cardiology - and she's seen plenty of doctors since then, God knows. > Whew, am I worried now! I keep thinking we - and the doctors - have been missing a major problem all along. Just when we thought things were about as resolved as things could get for 's health problems - whammo! > Pray for my peace of mind and nerves to make it until that report arrives. (Rick, of course, is fatalistic: " Can't do anything about it by worrying yourself to death. " ) I just want to know one way or the other. I HATE suspecting something but not knowing. > > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of the Rarely Rattled Rick! > Indianapolis, IN > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Chris: never had any repair surgeries, thank goodness. We got blessed that her ASD and PDA both closed on their own. Once those were resolved, we've never had another cardiology appointment, and no one ever mentioned any other murmurs or possible valve problems. Thanks for the sound info. I never really took time to learn to listen to her heart. We always had so much else to keep on top of (choanal atresia, renal - resulting in blood pressure regulation problems, GI reflux, nasopharyngeal reflux, food/formula intolerance/allergies, trach, g-tube/stoma problems, ears/tubes/fluid/hearing, swallow/secretions, multiple pneumonias, temp. regulation, weight gain - you know the list!); and the docs weren't worried about the ASD/PDA until they proved those would or would not close on their own. So that was one area I left pretty much alone and didn't learn as much about. Of course now I am kicking myself for not paying more attention and at least asking for follow-up, at least occassionally. I'm hoping today to contact the pulmonologist who ordered the echo and see if he can hurry the report. (He's pretty good about getting what he wants, when he wants it! Most people say he's arrogant, but that gets us results and we have a great relationship with him.) And thank you everyone for all the good thoughts and encouragement. Friends in CHARGE, Marilyn Ogan Mom of Kenny (12, ADD) and (9, CHARGE+) Re: heart question > Marilyn when had her repair did they remove a value or did they tell you that a specific value was not fully functioning? My Vicky had tetrology of Fallot repaired and at the time of surgery they removed her pulmonary value because it was essential useless. Since she does not have that value she continues to have a significant murmur because the value's job is to prevent backflow. Murmurs are heard anytime the blood is not flowing " correctly " ie when a value is missing or is not closing all of the way. This is a fairly common occurance and the doctor's may not have said anything figuring that you already knew of this murmur. The sound that is heard with ASD and/or VSD sounds like a train, it is easily audible. Value murmurs are not as easily audible but can still be heard even by a nurse who is not trained on various heart sounds. > Please let us know what happens, and I will definately keep you and your family in my thoughts and prayers. > > Chris > mother to Vicky (CHARGEr 2 3/4 yrs) > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Chris: never had any repair surgeries, thank goodness. We got blessed that her ASD and PDA both closed on their own. Once those were resolved, we've never had another cardiology appointment, and no one ever mentioned any other murmurs or possible valve problems. Thanks for the sound info. I never really took time to learn to listen to her heart. We always had so much else to keep on top of (choanal atresia, renal - resulting in blood pressure regulation problems, GI reflux, nasopharyngeal reflux, food/formula intolerance/allergies, trach, g-tube/stoma problems, ears/tubes/fluid/hearing, swallow/secretions, multiple pneumonias, temp. regulation, weight gain - you know the list!); and the docs weren't worried about the ASD/PDA until they proved those would or would not close on their own. So that was one area I left pretty much alone and didn't learn as much about. Of course now I am kicking myself for not paying more attention and at least asking for follow-up, at least occassionally. I'm hoping today to contact the pulmonologist who ordered the echo and see if he can hurry the report. (He's pretty good about getting what he wants, when he wants it! Most people say he's arrogant, but that gets us results and we have a great relationship with him.) And thank you everyone for all the good thoughts and encouragement. Friends in CHARGE, Marilyn Ogan Mom of Kenny (12, ADD) and (9, CHARGE+) Re: heart question > Marilyn when had her repair did they remove a value or did they tell you that a specific value was not fully functioning? My Vicky had tetrology of Fallot repaired and at the time of surgery they removed her pulmonary value because it was essential useless. Since she does not have that value she continues to have a significant murmur because the value's job is to prevent backflow. Murmurs are heard anytime the blood is not flowing " correctly " ie when a value is missing or is not closing all of the way. This is a fairly common occurance and the doctor's may not have said anything figuring that you already knew of this murmur. The sound that is heard with ASD and/or VSD sounds like a train, it is easily audible. Value murmurs are not as easily audible but can still be heard even by a nurse who is not trained on various heart sounds. > Please let us know what happens, and I will definately keep you and your family in my thoughts and prayers. > > Chris > mother to Vicky (CHARGEr 2 3/4 yrs) > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Chris: never had any repair surgeries, thank goodness. We got blessed that her ASD and PDA both closed on their own. Once those were resolved, we've never had another cardiology appointment, and no one ever mentioned any other murmurs or possible valve problems. Thanks for the sound info. I never really took time to learn to listen to her heart. We always had so much else to keep on top of (choanal atresia, renal - resulting in blood pressure regulation problems, GI reflux, nasopharyngeal reflux, food/formula intolerance/allergies, trach, g-tube/stoma problems, ears/tubes/fluid/hearing, swallow/secretions, multiple pneumonias, temp. regulation, weight gain - you know the list!); and the docs weren't worried about the ASD/PDA until they proved those would or would not close on their own. So that was one area I left pretty much alone and didn't learn as much about. Of course now I am kicking myself for not paying more attention and at least asking for follow-up, at least occassionally. I'm hoping today to contact the pulmonologist who ordered the echo and see if he can hurry the report. (He's pretty good about getting what he wants, when he wants it! Most people say he's arrogant, but that gets us results and we have a great relationship with him.) And thank you everyone for all the good thoughts and encouragement. Friends in CHARGE, Marilyn Ogan Mom of Kenny (12, ADD) and (9, CHARGE+) Re: heart question > Marilyn when had her repair did they remove a value or did they tell you that a specific value was not fully functioning? My Vicky had tetrology of Fallot repaired and at the time of surgery they removed her pulmonary value because it was essential useless. Since she does not have that value she continues to have a significant murmur because the value's job is to prevent backflow. Murmurs are heard anytime the blood is not flowing " correctly " ie when a value is missing or is not closing all of the way. This is a fairly common occurance and the doctor's may not have said anything figuring that you already knew of this murmur. The sound that is heard with ASD and/or VSD sounds like a train, it is easily audible. Value murmurs are not as easily audible but can still be heard even by a nurse who is not trained on various heart sounds. > Please let us know what happens, and I will definately keep you and your family in my thoughts and prayers. > > Chris > mother to Vicky (CHARGEr 2 3/4 yrs) > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
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