Tetralogy of Fallot (TOF) Life expectancy

[SFC146]

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.      

[Th3rdstrong]

My son Efrain III was born with TOF with four different complications and was not given more than a week to live! He has under gone 3 operation... 2 stents and one open heart surgery! Against all odds and everything Dr told us in God amazing grace and love My son is 2 yrs old now. Everything I have read thru your stories hits me straight to my heart knowing first hand what you have gone thru, and gives me hope for my son knowing Dr and medicine have come such a long way. Thank you God for giving them knowledge to help us all!

[AFeris]

Interesting question.   I had TOF repair in 1959 by Dr. John Kirklin, who wrote the book on cardiac surgery that is still in use today (according to a cardiac surgeon I had a discussion with), at the Mayo Clinic in Rochester, MN.  I'm 63 and will be celebrating 60 years post-surgery next year.  Pulmonary valve replacement in 2013.  Agreed with others, live life as you can, don't dwell on the TOF.  I'll talk with anyone who cares (and have, many, many times).

[JanelleK67]

I've asked the same question about life expectancy to my doctors at UCLA. They encouraged me to live a healthy lifestyle with regular followup. I have had a BT shunt (68 at 1 year old), full repair in 73, pulmonary valve replacement in 2006 and another pulmonary valve replacement a few weeks ago (August 2017). There are likely more valve replacements or maybe even more surgery in my future, but the doctors have assured me that I'm more likely to die from lifestyle induced heart issues than because of the tof. Taking care of yourself there's no reason to believe we can't live into our 80s or even older.

[2210485]

TOF is a lifetime of hassle, but I think as long as its repaired and the patient keeps doing what they need to do, follows up, watches their lifestyle etc, there's no reason they should live too much shorter then any normal john or jane.

The crazy thing is, we got folks on this forum that got tet repairs in the 60's and are still running around! Imagine how much the technology has advanced since then and how much better the prognosis is for the next generations that may be born with the tet conditions.

Its theoretically possible that future children with TOF may be more mindful of their lifestyles at an early age and outlive us all -_-

[yjoyce]

Hi all! It is great to see this! My S.O. has ToF and he is 35 years old. He is often normal but he seems to get tired easily.  He is also overweight, so he knows he has to lose weight.
Does anyone experience shortness of breath having this condition? He claims hr couldn't breathe when the weather is too hot (we live in Asia..) and when he climbs just one flight of stairs.  The doctor said he still needs to exercise buy he refuses because he said he "can't".
What kinds of exercises do you recommend? Do you experience such shortness of breath as well?
Thank you!

[JanelleK67]

I have tof. Born in 67, had a BT shunt in 68, and full repair in 73. In 2006 I started having issues being out of breathe with regular activity (showering, bringing in groceries etc). Little did I know, but it was full right sided heart failure. I had a valve replacement and within 2 months was back to a normal life.Shortness of breath should not be discounted. Your SO should see a doctor. He probably needs treatment. Last year I started having SOB and constant fatigue. I have had a valve replacement again (done via catherization) and within a week my symptoms are gone. I feel fantastic and can live my life again, including exercise. I encourage your SO to get a medical workup. With treatment he can feel so much better.

[1956stillgoing]

I am 61 years old, I was born with tof in 1956, had a b.t. shunt in 1958 and vsd repair, and pulmonary valve repair in 1967. Had a valve in 2004 and again in 2015. Worked 38 years raised 4 kids and still going storng traveling the country with my wife in my r.v.. Live, don't dwell on tof.

[Sdg0901]

Sure wish you could have a chat with my 17 (soon to be 18) year old son.  I love to see this! Hope!

[OrdinaryGirl97]

Wow! So many people with the same condition as myself, almost like a TOF community aha! I am 19 years old and I have my surgery at the age of 2. I have no needed any surgery since and the surgery I had couldn't have gone any better. I have a checkup with a cardiologist every three years. Unfortunately, having this conditions absoloutly terrifies me, so its comforting to see other women on here with it also who have children and a family. I know it sounds silly as I am only 19 but I am terrified of death because of my condition. I suppose there is not one simple answer for life expectancy which I nievely was hoping for. Does anyone else suffer from sharp pains on the left side of their chest? I get these daily usually and they only last for a split second but I'm not sure what this could mean. Any advice would be great. Thanks, Pippa.

[M_O_Ther]

I'm a 69 year old male, born with a Tetralogy in 1947. I had what I've been told was the 5th Potts procedure, done by Potts in Chicago in 1950 and a takedown of the Potts and repair done at the Mayo Clinic in 1972. In 1997, I was given a mechanical aortic valve, and my aortic arch was replaced with one of a gore-tex like material. Later that year an ICD/pacemaker  was implanted. I'm currently in the University of Michigan Health Center waiting to have my 4th ICD installed (the battery on the old one is at end of service) and a non functioning 3rd lead removed and replaced. I have some CHF, but am in good health generally. I still ride motorcycles. I hope to someday become the oldest living person born with a TOF, but I know my doctor has at least one TOF patient that's 72 or 73. .

[myafibheart]

Hallo.
It sounds like this is a TOF club.
My story is:
Born in1971 in South Africa, had an TOF repair done in Bloemfontein(One of the surgeons studied under Prof Christiaan Barnard). They did a very good job!! I am 45 now.

Had a few arrhythmias during my life but diagnosed with Atrial Fibrillation when I was about 23.
Since then had 7 cardioversions and one ablation. On 100mg Aspirin and 2,5mg bisoprolol.
Also had/have scoliosis but it did not bother me that much (I do situps almost every day and stay very healthy and fit)

Janco

[1980sarah]

Hi, I've just came across your question as I was looking for the same answer you asked. I to have TOF. I'm a 35 year old female with 3 children born 1980. I had my first TOF repair when I was 2 years old after it was missed by numerous doctors. When I was 12 I had my pulmonary valve replaced and something else done. Three years ago I had the pulmonary valve replaced again and a tricuspid repair, which wasn't fully successful. My aorta valve is also leaking. I've been told thathat I have heart failure and they can only pro long life now, which I fully accept, but I'd still like to know the rough answer to your question. After my last surgery I got afib which isn't helping me. I am slowly getting weaker, but to look at me you wouldn't know. Also until 4 years ago I worked full time. 60+ hours a week. Sarah.

[KAHMAH]

Kellyhue.com
I am 58 and was born with TOF in 1957!  I have not met anyone older than me with TOF, but my doc at the Mayo Clinic in Rochester said, "There are lots of you"...in her beautiful British accent.  My 1st & 2nd surgeries were performed by Dr. Effler at the Cleveland Clinic in 1962, and I had a 50/50 chance of surviving.  I spent 2 months in the hospital, contracted pneumonia and a staph infection on the Dacron patch on the hole, which is why I had the surgery twice. I did very well until my first child was born....you can read some of this on my blog.  
To make a long story short, I ended up having a porcine pulmonary valve replacement in 2000. It is still "like new" per my doc at the Mayo and my doc at Kansas City Med Center.  Because of my enlarged heart, the electrical system went haywire. So also in 2000 Dr. Gordon Danielson performed a "Maze" procedure to oblate extra nodes, because I had been experiencing frightening tachycardia episodes.  In Aug. 2012 on a routine check-up at the Mayo my heart rate was 36....so I now have a pacemaker that also serves as a heart monitor in way.  Although it doesn't pick up the fast heart rate when my heart is all-a-quiver due to taking Sudafed or something.  
Nothing is routine with TOF!
I have 3 healthy children and a good life with a wonderful husband of 32 years.  The heart medications I take because of the arrhythmia problems cause depression, but that is also a family problem.  So I have bio-medical depression that I take medication for.  I've taken very good care of myself and keep my weight at 132-136 by going to the gym and doing light weights, yoga, and walking on the treadmill.  Diet and exercise are key! But more importantly, I have a strong Christian faith that keeps giving me hope as well as good friends that understand health issues.
I really appreciate you all writing about your ordeals, because I know that it is not an easy road!

[lalo59]

Kahmah, I am also 58 years old and had 4 surgeries, 4 yr, 13 yr, 16 yr and 31.  Now I am in amazing health, the docs at Miami Children's are amazed.  Have some arrhythmia problem, but very manageable.  Have you seen the Melody stent out now?  I would love to talk with you.  I do not know anyone else either this old.  I live in FL right now, but plan to move to Dallas this year with my husband.  If you get this, you can find me on Twitter @LauraLongon

[heartfluttersflyawayplz]

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,

[Sonicbassman]

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???

[Kaikane7517]

Hi,
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?

[kidd1971]

Hello,
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.

[draejazmalik786]

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 .

[itdood]

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.