Heart Disease Community
20.1k Members
Avatar universal

Tetralogy of Fallot (TOF) Life expectancy

Tetralogy of Fallot (TOF) Life expectancy... I've been searching for an hour and can't find a strait answer on the subject.  I'm 32 years old with Tetralogy of Fallot (TOF), I've had a two corrective surgeries and just found out another procedure is on the way.  The first was to shore up the hole between ventricles and open the pulmonary valve (when I was two years old).  Unfortunate the doctor I was seeing from the ages of 18-25 never mentioned that I would need additional surgeries or that my right vertical was growing do to blood draining back through the valve.  I finally went to a new doctor who told me I'd need a replacement valve surgery ASAP.  My right ventricle did reduce in size after the valve replacement surgery.  Here I am 7 years later and needing a new one.  My new doctor is looking into getting me approved for the new procedure of replacing the valve no-evasively with a heart catheter.  I've been lucky with my procedures so far, my first one by all acounts was done very well and my second went smoothly at the Cleveland clinic.

So as a new father I'd like to have some answers as far as life expectancy.  Even if the answer is - we don't know for sure.  I get different feelings about the subject every time I see my doctor.  Worst case and best case would be nice.  I know that there aren't very many examples since it's only been so long since we've been doing these procedures but how about an estimation?  A best guess?  Anything would help.  I'm going to live with a large right ventricle and a valve replacement every 5-10 years.  OK, great, can I keep it up for thirty years?? Any info would be appreciated.      
17 Responses
995271 tn?1463927859
From my quick read on the subject, it sounds like as long as you stay on top of your checkups and deal with new issues the outcome is excellent.  I also read it's very common to need the valve(s) revised as you grow.

Some of the newer valves can last 20 plus years.  Do you know why the newer adult valve started leaking?  

There are 3 or 4 options one the valve replacement.  If it were me I'd seek a couple opinions on them and choose the one you like best.  The least invasive (cath) might not be expected to last as long as traditional.
Avatar universal
hi dr aejaz malik responding . t.o f corrective surgery if done by expert and skill full surgeon , gives  as good life expectancy as a normal healthy  one has provided u check ur heart parameters on regular basis and if they r correct and optimum. ur case seems to be messed up .
Avatar universal
I am a 41 year old male and was born with TOF in 1971. I was operated by Dr. Zerbini in Brazil when I was 2 and have lived a normal life since. However when I had my first kid at the age of 30 my wife told me to go check my heart just in case.
I have exaclty what you have a leaking right pulmonary valve and a bigger muscle on my right ventricule.
My doctors perfomed a procedure in 2007 to alieviate the leaking by placing a pulmonary STENT on my pulmonary artery. This was done without heart surgery but by catheter. It was a 3 hour procedure and I was just slept throught it and was out the next day. The difference was amazing. I felt young again. Since then I do follow ups every 2 years (ultrasounds, stress tests, etc.) they told me that later in life I may need a valve replacement but not for another 10 to 15 years. the leakage is very low now.
I am being followed at the Cardiology institut of Montreal Canada. I don't know if the STENT was the best long term solution but from hwat I have read so far this was the best for my case. I would suggest that you seek the advice of a heart specialist. Let me know if you need any more info. I just can't imagine going throught valve replacements every few years.
Avatar universal
I am now 54 y/o with some problems like associated with TOF.  I usually go into a strange rhythm once a year for as short as one day to as long as 1 month. It has not put me in the hospital but I did come close in 09.  I have some scoliosis and 5 congitally fused  vertebrae among other things. I was one of the first 30 complete heart stops at Stanford in California by Dr. Shumway in 1966 before he started doing the heart lung transfers.  I was just turning 6 Y/O. One suture did not hold and you can hear that on auscultation. I finally found an adult congenital heart defect specialist so I am learning a lot now.  I just found out that ADHD is very previlent in this group of people.  Anybody else have trouble in school and have hearing difficulties like Tinnitus?
Avatar universal
Holy smokes!!!, I'am a 33 male from North Dakota, USA, with TOF and you pretty much described me and my body to a tee!, right now to the 5 fused vertebra and ADHD!!!.... I don't have scoliosis but I do have hip dysplasia.... How did you discover about the ADHD and hearing in TOF patients???
212161 tn?1537898045
Question I to have spine fused all the way down only 3 on bottom not fused do ya have chest pain from it being fused, my chest ackes a lot and I feel it's from my back, had heart check up and always good,
Have an Answer?
Top Heart Disease Answerers
159619 tn?1538184537
Salt Lake City, UT
11548417 tn?1506084164
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Is a low-fat diet really that heart healthy after all? James D. Nicolantonio, PharmD, urges us to reconsider decades-long dietary guidelines.
Can depression and anxiety cause heart disease? Get the facts in this Missouri Medicine report.
Fish oil, folic acid, vitamin C. Find out if these supplements are heart-healthy or overhyped.
Learn what happens before, during and after a heart attack occurs.
What are the pros and cons of taking fish oil for heart health? Find out in this article from Missouri Medicine.
How to lower your heart attack risk.