I'm getting an Aortic Valve Replacement at the end of February. I'm only 25 and scared beyond words. It's something that has to be done though. I've met with Dr. Burkhart in person, he's extremely knowledgeable and even more confident, so I feel as if I'm in the right hands. I've seen some comments about being embarrassed about your scar, but you should embrace it. I mean how can you not? After a surgery you've become what I've been told as part of the zipper club.
I'm a nursing student and I have TOF. It was corrected when I was 11 months old. I'm 22 now - It hasn't limited me in any way (except for being self-conscious about the scar...but I got over that). I went about 10 years without seeing a cardiologist (woops) because I had no symptoms. I went for a checkup recently and I seem to be doing fine but have heart murmur. The cardiologist ordered a holter monitor (ECG for 2 days) and an echocardiogram - hopefully everything's okay!
I was born with TOF and i'm proud of my scar on my chest "My friends call it the scar of survival" and you can too ;p I had the shunt 9 days after i was born and the full operation at 2. now at 16 i see my cardiologist every 6 months and he's always very pleased to tell me i'm doing ok! Personally i've never met someone with this condition and my cardio. told me when i was 12 only 3 other childern had it so it's nice to read some positive coments
@Lucasblake90 They don't give you enough space to comment but if you want to learn about someone else me I have TOF and I have survived to ripe old age of 41. I have a blog check it out. my tofcondition .dinstudio. com I talk about what I have been through. It is a bit rough at times but remember everyone is different. I am just starting my blog and am getting educational stuff together now.
I am 45 yrs.old. I had 2 caths. one in 1965 when I was born, and the second in 1999 @ the UCSF by Dr. Frank Hanley- and was deemed inoperable . I have lived a fairly active & normal life. I have three children ages : 23,20, 6. I have recently experienced SVT'S but I am still functioning well. I live by faith , and docotors who have been knowledgable ,direct,and honest have been helpful.
i and my groupmates will report about tetralogy of fallot tomorrow. we are nursing students. actually, i am searching for explanations about this topic because we can't fully understand it. good thing i found this video. this really helps. thanks =)
@SarahBerah120 I have too Sarah if you want to see my story I have a blog. my tof condition . dinstudio . com but squish the lettering together this wont let me actually make it a website link ugh.
estoloy, Im not yet a physician, however statistically, there is a 5% survival rate of completely untreated ToF, I would highly suggest seeing a cardiologist as well as planning for lifetime cardiac management aside from surgical intervention with your respected cardiologist. God Bless and I hope all works out.
@estoloy well honey I just talked to my surgeon yesterday and its not a normal life span he said you are correct in thinking that you wont live to 78 for a women lifespan. I have been wondering the same thing I hope you find some peace with this. I have a blog I am trying to let people know what I have been thur. I am now 41 I am in congestive heart failure and have a defribulator pacemaker combo. ck out my blog my tof condition. dinstudio. com you have to squish the letters together
i had this disease when i was 6 months and now i have a shunt, and the long term affects for me is high blood pressure. also i take 5 heart medications; one for high blood pressure of course.
My daughter now 12 yrs old underwent b-t shunt at 2yrs of age.The corrective surgery was postponed because it is too complicated and will be done at later a stage if required.now she is having clubbing/central cyanosis/sometimes breathlessness while going in to sleep.Her physical activities not restricted too much and can take care of her own.Now can she undergo final corrective surgery now ? please reply.
It's good to hear that you're doing well. I'm also a cardiac patient. I have the same type of condition that you have. I had my first surgery at the age of 5 and second surgery at the age 13. Just recently, I had a pacemaker implanted in me due to my abnormal heart beating. I'm 20 years old now and will have another surgery to replace my pulmonary heart valve.
@sactownism wow did they say why they just wouldn't do the valve? I had the valve replaced and it helped so much with the missed beating for awhile then I went into heart block several years later and had to get the defribulator/pacemaker combo.
Hello mrstmk13, it's been a year and I still haven't had my pulmonary heart valve replaced and I'm thinking it's a good thing for me.
I'm just wondering, what is a heart block? It's a good thing that you had a defribulator/pacemaker combo implanted in you. Us, heart patients are very lucky to have a second chance of life.
@sactownism A heart block is when your lower part of your heart quivers instead of pumps and doesn't pump blood up to the upper chambers while the upper half of the heart is still beating but not getting blood flow. SO the defibrulator/pacemaker is then put in because it can regulate the pumping by pacing the heart but if that pacing speeds up and it still goes in to heart block it can then shock it back to rhythm and you wont have such a bad effect from it to my understanding.
@mrstmk13 so far I have only been shocked once and that was a testing shock. I haven't had an episode since the machine was placed. Yes I agree we do get a second third chance at life. Its wonderful the way medicine has grown to help us and others with these congential diseases. God has definately blessed us all.
I was born in 81 with ToF and stenosis of the lungs. I have had no corrective surgery at all but i have been closely monitored by cardiologist. when i was younger I was limited with what i could do, but so long as i did not over-do it I was fine, my condition has been deteriorating over that past 5-6 years so it has been decided something needs to be done! I have a meeting with a a cardiac surgeon tomorrow to discuss possibilities! Il keep you posted for those interested in a non-corrected FoT
I was born with TOF in 1985, had surgery at 9 months, was told I wouldn't be able to play sports because of it and that I would someday need my pulmonary valve replaced. I grew up playing every sport possible basketball, baseball, soccer, track, everything (and at a very high level too). I had my valve replaced when I was 15, I had the surgery in november and by january I was back on my basketball team. I'm 24 now, 6-1 190lbs healthy and athletic. Your child can grow up normal if you let them!!!
My baby (three and a half months old) has TOF. He is getting a balloon next Tuesday, his pulmonary valve is getting very narrow (5 meters per sec.) and we are trying to buy some time.
Additionaly he has a supraventricular tachycardia, he is on Propafenon (15 mg per kilo). Do you have experience with patients with such a combination?
@GrudgeQueen you have one of those moms too. lol shes just trying to protect you as mine did me. But you do need to know your condition and what your limitations are. I have had three open heart surgeries and have a defribulator/pacemaker combo it shocks the heart if it gets out of rythm.
I had TOF. I had a total repair at the Mayo Clinic in 1963 which, I think, was before this lovely doctor was even born! I have had a healthy life so far and intend to be really really old when I do die.
Thanks to all the great docs and nurses at the Mayo.
You made my day! My baby has TOF and I wonder what kind life is he going to have. Thank you and all TOFs for posting about your experience, it helps desperate moms a lot.
To TheEvaki: I work in Public Affairs at Mayo Clinic and would like you to know that you can contact Dr. Burkhart or any of our cardiovascular surgeons at 507-255-2000. Thank you, Julie Moenck
I was just reading your post and my grandson was told the same thing. He's 6 days old today. were you able to find the help you needed? Can you share the out come please.
This is the most thorough explanation of TOF we've heard. My daughter had TOF repair at age 1 in 1990 and Dr Burkhart put in a pulmonary valve in 2009. I highly recommend his practice as well as Mayo.
i have this condition and even though i had a really difficult childhood, 5 surgeries and probably more than 8 cardiac cath, i live a normal life, i got married, i have a daughter that was born naturally, and i feel great now!
I was born with this condition too. I have been absolutely lucky to have excellent care and a wonderful doctor. This video actually helped me understand my condition more. Good video.
i hae this health defect right nowad i have a lungthat dosnt work but live a pretty healthy normal life i thank god for thi but dose anyone have any storys they would like to share with me ore any questions you would like to ask because i would love to answer
The technology he is talking about here is far more advanced than it was when I had it. done in 1973. The shunt was done on me at 3 years old which left me disfigured on the left. because the insertion was done far too high. The major corrective surgery wasn't done until I was 8 years old . I have been told from my consultant that I may need the Pulmonary Valve corrected or replaced in 10-15 years time (i'm 43). I have irreguar heart rythms which leave me feeling unwell from time to time.
@wakkiJ me too. I am 41. I have a defribulator/pacemaker and there are days I just can't get out of bed. I had the pulmonary valve a pig valve I will have to replace if I don't get the transplant first. I wish these doctors would offer up all this information to let you know whats ahead of you. I always kinda known though. I had my first surgery in 1970 8days after birth. I was born blue. This condition is no ride in the park. For us older folks. lol
@mrstmk13 the thing that gets me, is now i know why Ive been having probs since i hit my 40's but why didn't they tell my mum this that it affects us later on in our years .. not only that the UK Disability System will not recognise this condition as a Disability where in America they do. We were fine after we had our corrective surgery and lead a realitively normal life but now we are older and things are showing themselves that restrict us do they not aknowledge the years.
@wakkiJ I am so sorry your having issues now. I don't think the doctors do this one purpose though I have asked myself the same exact question. Why didn't they tell me I would have issues later. And the answer I keep hearing is that even though this has been around many years, not many of us survived to adulthood and so the few of us that have have either passed away in there twenty or thirtys a few past that but not enough of us to really get any data from
@mrstmk13 to see if we would have any major complications you got to remember they discovered this condition in the 1800's were the mortality rate was so low. That only since the 60-70's were we started to live past expectations. We have come along way in medicine since then and just not enough of us to really study long term effects yet to my knowledge. I also started having complications in my mid twenties. I now am 41 with a defibrulator/pacemaker combo and waiting on a new heart.
My VSD patch has always been a time bomb it has already shown signs of a bulge, cant do certain jobs or do silly things to put too much pressure on it incase it bursts it and cannot work more than 16 hrs a week now and one day will probably have to give up work a lot earlier than retirement age. Not wanting to give faulse hope to those who are having their surgeries I survived and lived a great life but they should explain that in later years it wears itself out lol.. and the
@wakkiJ I don't understand why the UK don't notice it as a disability, I am on disability from this condition here in the US. I can't work cause I don't have enough oxygenated blood and I some times pass out. plus the misbeats the heart has is so dangerous and if your working and have one its not at all good. I right now am having a horrible day because I feel week and just can't motivate myself to do much other then go down stairs to eat lunch other then that I am done. u have good days
@mrstmk13 and bad days sometimes more bad then good. They should reconize it as a disability because it really is one. I just pray your not working doing something dangerous where you can get harmed if you have a spell. May God Bless you honey and take care of you
Comment removed
spatemdim 1 week ago
I'm getting an Aortic Valve Replacement at the end of February. I'm only 25 and scared beyond words. It's something that has to be done though. I've met with Dr. Burkhart in person, he's extremely knowledgeable and even more confident, so I feel as if I'm in the right hands. I've seen some comments about being embarrassed about your scar, but you should embrace it. I mean how can you not? After a surgery you've become what I've been told as part of the zipper club.
FarewellFix 2 months ago
I'm a nursing student and I have TOF. It was corrected when I was 11 months old. I'm 22 now - It hasn't limited me in any way (except for being self-conscious about the scar...but I got over that). I went about 10 years without seeing a cardiologist (woops) because I had no symptoms. I went for a checkup recently and I seem to be doing fine but have heart murmur. The cardiologist ordered a holter monitor (ECG for 2 days) and an echocardiogram - hopefully everything's okay!
angelicharmony 2 months ago
I was born with TOF and i'm proud of my scar on my chest "My friends call it the scar of survival" and you can too ;p I had the shunt 9 days after i was born and the full operation at 2. now at 16 i see my cardiologist every 6 months and he's always very pleased to tell me i'm doing ok! Personally i've never met someone with this condition and my cardio. told me when i was 12 only 3 other childern had it so it's nice to read some positive coments
Lucasblake90 9 months ago 2
@Lucasblake90 They don't give you enough space to comment but if you want to learn about someone else me I have TOF and I have survived to ripe old age of 41. I have a blog check it out. my tofcondition .dinstudio. com I talk about what I have been through. It is a bit rough at times but remember everyone is different. I am just starting my blog and am getting educational stuff together now.
mrstmk13 1 month ago
This video saved me a lot of confusion. He explains very well. Will come in so handy for my finals. Thankss!
TheAnaRayAna 9 months ago
thanks for giving such a nice and precious informations.....
creamyization 9 months ago
I am 45 yrs.old. I had 2 caths. one in 1965 when I was born, and the second in 1999 @ the UCSF by Dr. Frank Hanley- and was deemed inoperable . I have lived a fairly active & normal life. I have three children ages : 23,20, 6. I have recently experienced SVT'S but I am still functioning well. I live by faith , and docotors who have been knowledgable ,direct,and honest have been helpful.
QueenKimella 10 months ago
thanx alot
rehany86 10 months ago
i and my groupmates will report about tetralogy of fallot tomorrow. we are nursing students. actually, i am searching for explanations about this topic because we can't fully understand it. good thing i found this video. this really helps. thanks =)
dothYuexy 1 year ago
I have this condition...I have had three open heart surgries :(
SarahBerah120 1 year ago
@SarahBerah120 I have too Sarah if you want to see my story I have a blog. my tof condition . dinstudio . com but squish the lettering together this wont let me actually make it a website link ugh.
mrstmk13 1 month ago
estoloy, Im not yet a physician, however statistically, there is a 5% survival rate of completely untreated ToF, I would highly suggest seeing a cardiologist as well as planning for lifetime cardiac management aside from surgical intervention with your respected cardiologist. God Bless and I hope all works out.
mubball1 1 year ago
:.hello ..i have a ToF..
Ive never done in a surgery..since i was
born..i am 20 yrs.of age now by Gods grace..
i just want to ask what usually the lifespan in having this kind of disease pls respond pls...
estoloy 1 year ago
@estoloy well honey I just talked to my surgeon yesterday and its not a normal life span he said you are correct in thinking that you wont live to 78 for a women lifespan. I have been wondering the same thing I hope you find some peace with this. I have a blog I am trying to let people know what I have been thur. I am now 41 I am in congestive heart failure and have a defribulator pacemaker combo. ck out my blog my tof condition. dinstudio. com you have to squish the letters together
mrstmk13 1 month ago
i had this disease when i was 6 months and now i have a shunt, and the long term affects for me is high blood pressure. also i take 5 heart medications; one for high blood pressure of course.
fantasticanime2010 1 year ago
My daughter now 12 yrs old underwent b-t shunt at 2yrs of age.The corrective surgery was postponed because it is too complicated and will be done at later a stage if required.now she is having clubbing/central cyanosis/sometimes breathlessness while going in to sleep.Her physical activities not restricted too much and can take care of her own.Now can she undergo final corrective surgery now ? please reply.
NAYARFM 1 year ago
Thank you for this great information. I'm a nursing student and it helps a lot to see such a great adio/visual explanation of TOF! Thanks again!
MendingTheHurts 1 year ago
It's good to hear that you're doing well. I'm also a cardiac patient. I have the same type of condition that you have. I had my first surgery at the age of 5 and second surgery at the age 13. Just recently, I had a pacemaker implanted in me due to my abnormal heart beating. I'm 20 years old now and will have another surgery to replace my pulmonary heart valve.
sactownism 1 year ago
@sactownism wow did they say why they just wouldn't do the valve? I had the valve replaced and it helped so much with the missed beating for awhile then I went into heart block several years later and had to get the defribulator/pacemaker combo.
mrstmk13 1 month ago
@mrstmk13
Hello mrstmk13, it's been a year and I still haven't had my pulmonary heart valve replaced and I'm thinking it's a good thing for me.
I'm just wondering, what is a heart block? It's a good thing that you had a defribulator/pacemaker combo implanted in you. Us, heart patients are very lucky to have a second chance of life.
sactownism 1 month ago
@sactownism A heart block is when your lower part of your heart quivers instead of pumps and doesn't pump blood up to the upper chambers while the upper half of the heart is still beating but not getting blood flow. SO the defibrulator/pacemaker is then put in because it can regulate the pumping by pacing the heart but if that pacing speeds up and it still goes in to heart block it can then shock it back to rhythm and you wont have such a bad effect from it to my understanding.
mrstmk13 1 month ago
@mrstmk13 so far I have only been shocked once and that was a testing shock. I haven't had an episode since the machine was placed. Yes I agree we do get a second third chance at life. Its wonderful the way medicine has grown to help us and others with these congential diseases. God has definately blessed us all.
mrstmk13 1 month ago
I was born in 81 with ToF and stenosis of the lungs. I have had no corrective surgery at all but i have been closely monitored by cardiologist. when i was younger I was limited with what i could do, but so long as i did not over-do it I was fine, my condition has been deteriorating over that past 5-6 years so it has been decided something needs to be done! I have a meeting with a a cardiac surgeon tomorrow to discuss possibilities! Il keep you posted for those interested in a non-corrected FoT
Lachipoo 1 year ago
I was born with TOF in 1985, had surgery at 9 months, was told I wouldn't be able to play sports because of it and that I would someday need my pulmonary valve replaced. I grew up playing every sport possible basketball, baseball, soccer, track, everything (and at a very high level too). I had my valve replaced when I was 15, I had the surgery in november and by january I was back on my basketball team. I'm 24 now, 6-1 190lbs healthy and athletic. Your child can grow up normal if you let them!!!
musketeerswhat 1 year ago
Thank you so much for the information. It actually makes sense now
tucabuca2000 1 year ago
i when i was 1 year old, i have a operation beacous i also have a tetralogy of fallot and it is incredible to see the same operation they do to me
1892mateo 2 years ago
Dr. Burkhart,
My baby (three and a half months old) has TOF. He is getting a balloon next Tuesday, his pulmonary valve is getting very narrow (5 meters per sec.) and we are trying to buy some time.
Additionaly he has a supraventricular tachycardia, he is on Propafenon (15 mg per kilo). Do you have experience with patients with such a combination?
norabasualdo 2 years ago
I am a nursing student and we are studying congenital heart defects. This video really helped visualize the information we are reviewing. Thank you.
memphisn8 2 years ago
I have TOF to.
I actually have to go see my cardiologist next week.
This video explained alot of things my mom won't tell me. So thanks.
GrudgeQueen 2 years ago
@GrudgeQueen you have one of those moms too. lol shes just trying to protect you as mine did me. But you do need to know your condition and what your limitations are. I have had three open heart surgeries and have a defribulator/pacemaker combo it shocks the heart if it gets out of rythm.
mrstmk13 1 month ago
I had TOF. I had a total repair at the Mayo Clinic in 1963 which, I think, was before this lovely doctor was even born! I have had a healthy life so far and intend to be really really old when I do die.
Thanks to all the great docs and nurses at the Mayo.
CCMermaid53 2 years ago
You made my day! My baby has TOF and I wonder what kind life is he going to have. Thank you and all TOFs for posting about your experience, it helps desperate moms a lot.
norabasualdo 2 years ago
heeey im studying this :D rigt to left shunt causing..great vid. >>> 5 starts pal
9inzaghi9 2 years ago
To TheEvaki: I work in Public Affairs at Mayo Clinic and would like you to know that you can contact Dr. Burkhart or any of our cardiovascular surgeons at 507-255-2000. Thank you, Julie Moenck
juliemoenck 2 years ago
awesome information. this cardiologist is amazing. he really knows his stuff!
Norb1t9 2 years ago
my nephew is 2,5 months old his got o hole in his heart and has no artery going to his lungs doctors say theres nothing they can do, please help me!!
TheEvaki 2 years ago
@TheEvaki
I was just reading your post and my grandson was told the same thing. He's 6 days old today. were you able to find the help you needed? Can you share the out come please.
trinasgranny 2 years ago
This is the most thorough explanation of TOF we've heard. My daughter had TOF repair at age 1 in 1990 and Dr Burkhart put in a pulmonary valve in 2009. I highly recommend his practice as well as Mayo.
hattrick3for3 2 years ago 2
My son has TOF. This video is very helpful. thank you
cosita0503 2 years ago
i have this condition and even though i had a really difficult childhood, 5 surgeries and probably more than 8 cardiac cath, i live a normal life, i got married, i have a daughter that was born naturally, and i feel great now!
hmaniely 2 years ago
Comment removed
biblefarce 2 years ago
I was born with this condition too. I have been absolutely lucky to have excellent care and a wonderful doctor. This video actually helped me understand my condition more. Good video.
LizVlogs 2 years ago
i hae this health defect right nowad i have a lungthat dosnt work but live a pretty healthy normal life i thank god for thi but dose anyone have any storys they would like to share with me ore any questions you would like to ask because i would love to answer
reidgarwinfan28 2 years ago
Great video, I was born with this condition and although I have been given excellent care any information is really useful.
clairewdg 2 years ago
Thank you very much for this. This gives me a much better understanding than I got from just reading the book.
nursewretched 2 years ago
The technology he is talking about here is far more advanced than it was when I had it. done in 1973. The shunt was done on me at 3 years old which left me disfigured on the left. because the insertion was done far too high. The major corrective surgery wasn't done until I was 8 years old . I have been told from my consultant that I may need the Pulmonary Valve corrected or replaced in 10-15 years time (i'm 43). I have irreguar heart rythms which leave me feeling unwell from time to time.
wakkiJ 2 years ago
@wakkiJ me too. I am 41. I have a defribulator/pacemaker and there are days I just can't get out of bed. I had the pulmonary valve a pig valve I will have to replace if I don't get the transplant first. I wish these doctors would offer up all this information to let you know whats ahead of you. I always kinda known though. I had my first surgery in 1970 8days after birth. I was born blue. This condition is no ride in the park. For us older folks. lol
mrstmk13 1 month ago
@mrstmk13 the thing that gets me, is now i know why Ive been having probs since i hit my 40's but why didn't they tell my mum this that it affects us later on in our years .. not only that the UK Disability System will not recognise this condition as a Disability where in America they do. We were fine after we had our corrective surgery and lead a realitively normal life but now we are older and things are showing themselves that restrict us do they not aknowledge the years.
wakkiJ 1 month ago
@wakkiJ I am so sorry your having issues now. I don't think the doctors do this one purpose though I have asked myself the same exact question. Why didn't they tell me I would have issues later. And the answer I keep hearing is that even though this has been around many years, not many of us survived to adulthood and so the few of us that have have either passed away in there twenty or thirtys a few past that but not enough of us to really get any data from
mrstmk13 1 month ago
@mrstmk13 to see if we would have any major complications you got to remember they discovered this condition in the 1800's were the mortality rate was so low. That only since the 60-70's were we started to live past expectations. We have come along way in medicine since then and just not enough of us to really study long term effects yet to my knowledge. I also started having complications in my mid twenties. I now am 41 with a defibrulator/pacemaker combo and waiting on a new heart.
mrstmk13 1 month ago
My VSD patch has always been a time bomb it has already shown signs of a bulge, cant do certain jobs or do silly things to put too much pressure on it incase it bursts it and cannot work more than 16 hrs a week now and one day will probably have to give up work a lot earlier than retirement age. Not wanting to give faulse hope to those who are having their surgeries I survived and lived a great life but they should explain that in later years it wears itself out lol.. and the
wakkiJ 1 month ago
and the government and medical profession should recognise it as a disability in the adult years.
wakkiJ 1 month ago
@wakkiJ I don't understand why the UK don't notice it as a disability, I am on disability from this condition here in the US. I can't work cause I don't have enough oxygenated blood and I some times pass out. plus the misbeats the heart has is so dangerous and if your working and have one its not at all good. I right now am having a horrible day because I feel week and just can't motivate myself to do much other then go down stairs to eat lunch other then that I am done. u have good days
mrstmk13 1 month ago
@mrstmk13 and bad days sometimes more bad then good. They should reconize it as a disability because it really is one. I just pray your not working doing something dangerous where you can get harmed if you have a spell. May God Bless you honey and take care of you
mrstmk13 1 month ago