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Tetralogy Of Fallot

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  • Please help!!! TOF repair in 1986, pulmonary valve replacement?

    Im a 30 year old male, had a TOF repair in 1986. LPA Stent at age 15. Ive been symptom free for the most part, except when I run a lot then I do get a bit of SOB. But other than that Ive been symptom free. I went into a Cardio consult, and based on my EKG and ECHO, they said I need to get a open heart...

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  • Concentration Issues at School

    my child is 12½ and had corrective surgery at 1½.  He has been told he will be getting a valve replacement sometime and was just recently told to come back for a check up in 2 years.    (usually we have check ups yearly)  re schooling - we have always had issues with him...

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  • Long term outlook

    I have only recently found out (4 series ago)that I had Tof when I was born in 1956. The operation was in 1972 age 7 years. It now looks like I was one of the first people to have the surgery as it was only about then they had the echo units sorted to see what was going on I livde with it till then....

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  • Brain Development of ToF fetus/baby

    All, we just learned that our baby (22 gestational weeks) has ToF and is also showing delayed brain development with accompanying reduction in head circumference.  After doing exhaustive research on white papers regarding cognitive outcomes for ToF children, Im wondering if this delayed development...

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  • My daughter was born with tetralogy of fallot, i know wh...

    My daughter was born with tetralogy of fallot, i know what to look for to keep her safe. but i would really like to know what i'am in for. what the surgery is going to be like and what will she be like after. i have never met anyone who has had a child with this condidtion. everything that iam being...

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  • My life with TOF...now another surgery.

    Hi I'm currently 38 years old. I had TOF repaired when I was 2 in 1980...I got lost in the system after moving out of my parents house. Well in October I finally decided to go to the doctors after having two almost fainting spells and lots of palpitations. After having an echo done it was determined...

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  • TOF and ear piercings

    My daughter has tof which will get repaired when she is around 6 months old. Was spending another afternoon here doing research and saw someone say they couldn't get their ears pierced with TOF? Curious if she would be able to after repair and if anyone has any insight on that subject?

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  • Need help and clarity

    My baby girl was diagnosed with TOF at 25 weeks old. I'm currently 30 weeks. We have know since 20 weeks that something is wrong with her heart. I have been such a wreck because everyday I fear that when she is born, that there will be other issues that I'm unaware off (i.e. Downs or digeorge)....

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  • Please help... need support.

    We found out the day after my son was born that he has TOF. He is 2 weeks old yesterday. He has a 5.5mm hole and his valve is becoming increasingly more tightened by the day it seems. He had an echo in the hospital and another yesterday that revealed the pressure has nearly doubled in the last 2 weeks....

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  • Adult experience living with ToF

    A little back story of my life I guess. I was born in 1974 and had my first heart surgery when I was 9 months old.(went undetected until I was 6 months old). Surgery was successful, but when I read posts from others, I seem to have had more difficulty breathing than what others have experienced. I...

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  • Adult experience living with ToF

    A little back story of my life I guess. I was born in 1974 and had my first heart surgery when I was 9 months old.(went undetected until I was 6 months old). Surgery was successful, but when I read posts from others, I seem to have had more breathing than others experienced. I had continuous shortness...

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  • 17 year old son needs pulmonary valve replacement

    My son was born with TOF.He is 17 years old now,does not have any symptoms.He had TOF surgery at 2 years of age.Recently Cardiologist has suggested to go for an eletive open heart surgery for pulmonary valve replacement.If any one has similar experience please share with me.Thanks.

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  • hi,it upsets me that you think you may not have your dau...

    hi,it upsets me that you think you may not have your daughter for much longer,my son was born with fallots 19 years ago,he had surgery at 18months old and will be having a valve replacement on the 16th or next month.he is fine he plays football 4 times a week and you wouldnt know anything was ever wrong...

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  • ToF & drug-induced qtP

    Hi all - just wondering if anyone has any experience with Tetralogy and QT prolongation. I am 32 and I have ToF (open heart repair 1986, currently no restrictions) and suddenly it seems that any medications coming across my path carry the potential for QT prolongation. Has anyone heard whether or not...

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  • digeorges syndrome/tof

    My son is 11 years old. he has digeorges syndrome which led him to have TOF,. We have had a lot of ups and downs over the years. He was 7months old when he started to have blue spells, in which he ended up having the shunt op when he was 9 months old. i dont know how i got through this period, but i...

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  • TOf planning for IVF

    Friends I am new here, I got my TOF repaired in 2002. Had a great life after that, I am so lucky that I got married 6yrs ago but came to know that I had a tumour in one ovary so in 2014 I went thru one more surgery and got it removed. Now doctor has suggested that only ivf would me to conceive. I am...

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  • Soft and monotone voice

    Can anyone relate to this? I'm a 19 y/o male Aside from all the worried parents hanging around there.. Are there any relatable people around here of my age?  So i got tetralogy of fallot and my voice is very soft and often monotone depending on my mood/tiredness aswel. People often joke that...

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  • New to TOF

    I'm 51 and only found out a couple of months ago that I was born with a TOF. I knew I had heart surgery but my parents told me it was a hole in the heart. I had surgery at 6 years old and follow ups until I was 16. I have had 3 healthy strapping lads and have enjoyed a full and happy life. Started...

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  • 'Sometimes im so afraid'

    Hi, I was born in 1966 and had my surgery when I was 4 years old, in 1970 I got married when I was 20, and had my first stroke aged just 21 then another when I was 28. then i was fine until i started getting out of breath and had to have my pulmonary valve replaced, and another hole repaired in 2003...

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  • My Son has TOF

    My son was born on April and shortly after we found out he had tetralogy of fallot. He looks healthy and at 5months no problems so far! i just worry about the unknown, theres lots of questions i want to ask our cardiologist but im afraid of the answers. Id love to hear from anyone who has had a child...

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  • fallots tetrology

    HI HAD MY FOT OP IN 1974 .FEELING FIT BUT AFTER A ROUTINE MEDICAL HAVE BEEN TOLD I HAVE A MODERATE LEAK ON MY AORTIC VALVE AND A SEVERE LEAK ON MY TRICUSPID VALVE,OVER THE NEXT 10-20 YRS IT IS HIGHLY LIKELY THAT I WILL NEED THE VALVES REPLACING!!!I AM IN TOTAL SHOCK,AFTER HAVING 3 CHILDREN AND LEADING...

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  • What 2expect

    My son was 4 months wen he was diagnosed wiv fallows he had his op at 11mths he's now turning 11yrs in 2 weeks he's dew 2 go back next yr 2hav a balloon put in any advise on wot 2 expect would b very much appreciated 

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  • my daughteris 18 weeks old and has tetralogy of fallots....

    Doctors and surgeons are now beginning to discuss her surgery and im terrified... im just so scared of my baby going through this! I dont know anyone with this condition etc and although my partners a great man and dad, he wont speak about stuff and im just hoping someone with experience in this condition...

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  • need to talk to people going through the same!

    Our son was diagnosed with Tetralogy of fallot 6 weeks ago at 3 and a half months after a trip to the GP with a bad cough and chest infection. We were sent to our local hospital from the GP surgery and then sent to Alder Hey the next day where he was diagnosed after a scan. He hasn't had any blue...

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  • I Was Born With This Condition

    Hi my name is Diana Rose and right now I'm in school. I am 15 years old and attend Eastwood High School in El Paso, Texas. I was just board and decided to look at Tetralogy Of Fallot. I don't always like to look at stuff like that it freaks me out and after a while my heart beats a little more....

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  • tetralogy of fallot

    my 2 week old baby son has tetralogy of fallot..i cant stop crying and am so worried about how it will affect his life.can anyone in a similar situation email me at xxx and share their story with me and give me some positivity. he is not feeding well and is still in hospital and is due to meet...

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  • Feeling lots of things!

    Hi I'm a 26 year old girl who had a tetralogy of fallots when I was born and required 3 operations in my childhood the last one when I was 3 years old and I have been very lucky that I haven't had to be on medication and have led a really normal life. I have been treated in Great Ormand Street...

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