Long term outlook
Posted , 4 users are following.
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. Couldn't get up a flight of stairs.
Mum pushed me to school in a buggy. Boy did I have a tuff time trying to get a girl friend at primary school
Now at 51 having a few problems and have to have a pacemaker fitted next week.
Nothing to do with a Tof. Just ...these things happen.
I have had a cracking life. Sailed round the world. Captained large private yachts. Diving holidays, played in local rock bands.
So what I'm trying to say is apart from "Hello".
This is a tough time for many of you, but it doesn't mean your little ones are going to be held back in life, that's entirely up to you as parents.
The ONLY thing my mother was advised was that I shouldn't play contact sports.
I have had my ears pierced, I drank, yes I smoked for a while and lived life to the full. This operation is not the end, it is the begining.
Please keep your heads up and keep faith in the doctors and specialists. They know how to do this. I was test case and am still here with my own child and I wouldn't change a thing.
I'm a Tof kid and PROUD of it
Kim
2 likes, 12 replies
Captainkimbo
Posted
Don't you just hate auto correct
Was supposed to say (4weeks) ago!!.
Mind you my life has been like a soap opera some times 😋
Kim
NicoleB95 Captainkimbo
Posted
Don't mean to pry, but did you happen to have children? My husband and I had planned on having children ( he has ToF) but recently he has been thinking about his condition and is afraid that if we have a child that he might pass away suddenly and leave us by ourselves. Just wanted some feedback, thank you!!
Captainkimbo NicoleB95
Posted
Hi Nicole.
Hmm just been driving back from a little Job i had to do and been thinking about how to reply... Firstly... Your not priying. It's called" info gathering" that's why ee look to these forums. As you may have read n my posts, i have only found oit in November i was a Tof kid. I have been struggling to find info as well and basically faied. So any insight/ help/ advice i can give/ receive is more than welcome and fgiven. ( There is a rant I'm trying not to give into too about support from the medical establishment)
Ok yes i have an 18 year old daughter. I have just insisted with my doctor to have her checked out. Fortunatly all ok. It is agenetic thing so could be passed on but highly unlikely. That to me would be a bigger worry.
Note as far as your husband and you are concerned.. I am not a religous person so do tend to believe in fate to a degree. Who knows what is going to happen in the future. I have friends who have just lost their 16 year old daughter to cancer. Your husband is more likely to be killed driving his car. So i want to say you must get on with your life. It doesnt help though does it!!!!!!!
Here is my way of coping. I will know be checked over on a yearly basis. So if any thing starts to go wrong then it will be picked up fairly quickly and hopefully delt with before it becomes critical. Question.......do YOU get a full medical every year??? Most people don't , so in a way, your husband and I have a better chance of a full and happy life than most people.
Please don't go down the" what if" route. It can only lead to you being too frightend to leave the house. This could leave to depression and recrimination from both parties. PLEASE try and be posative. It's not an affliction. It can be / has neen cured. He is no diffetent than any one else. Just better looked after ( finger on nose nah nah na na nah).
Have kids, enjoy them . trust me, they will bring more worry than any thing. 😁😁
Kim
sara1959 Captainkimbo
Posted
Just as you, I am a Tof as well. My uncle, who was my doctor, made the initial diagnosis in 1960, I was born in 1959 and he found out what my problem was in early 1960. Back then they did not perform the surgery until the child was older if at all possible since the surgery was still new as such and there were few doctors who knew how to perform it. I ended up having my surgery in 1969, at 9 1/2 years old. I am now 56 with two grown children. The surgery back in 1969 took 12 hours, with 3 different sets of surgicial teams taking turns, as the surgery is complicated, or at that time was. I was in the hospital for 2 months, in ICU for over a month and a half. I remember they would not allow my parents to see me but for 5 minutes twice a week as they were afraid of germs. I chuckle to myself now when I hear of the surgery taking maybe 6 hours if that, and the patients are maybe in the hospital a week or shorter. My cardologist released me from his care when I turned 16, I do watch when I get infections, go to doctor for antibotics etc. Same as a dentist, antibotics before dental work, other than that I am as normal as can be. The surgery did change my life, it gave me life! Let your kids be kids! They will know when they are tired, when they need to rest. Don't stop them from exploring anyway that they can. That is what I would say to any parent going through a diagnosis of a child with TOF.
Captainkimbo sara1959
Posted
WOW!!!! Sara1959
It just proves that you shouldn't believe what you read on the internet!!!!!
I didn't know i was aTOF so had to google for the info.
What part of the world do you live?
They had obviously starting to perfect the technique after a couple of years as i was in hospital for meer 6 1/2 weeks. Aargh modern science!!!.
Its still scary though for people. It's good if we get us "old hand" to offer support as ive just had heart failure and now have a pacemaker due to a virus. Guess i was lucky it ended with a p.m.
I heard a program that 70 % of people who have heart problems suffer with depression and there is a2 day confrence just finished in PARIS with people of significance discussing this and how support can be better given.
So fit a parent or the child themselves it is a scary thing and the medical system seams to do the work, get them oit the door and say..." Oh by the way, youll need to have surgery again in a few years time cos your valve won't last that long.....byeee"
Qiestion....... Have you had to go back in for a replacement valve...i havent and after 44 years. According to my latest check up, it is leakng but no more y than any one else of my age so best leave alone.
Kim
sara1959 Captainkimbo
Posted
I live in Ohio, USA, had my surgery done in Cincinnati. At the time I had my surgery I of course was only 9 1/2 so didn't really understand all of it. For the most part all I knew was that I was different than all the other kids. Years later my uncle told me that there were 6 different things wrong with my heart and they were able to correct 4 of them. I know I have a teflon patch, they fixed a couple of the valves, and one other thing my uncle, who was aging at the time, could not remember. I do have a heart mummer that surprises the heck out of any doctor who listens as they immediately want me to go see a cardiologist until I explain to them that I have always had it. The doctors told me/my parents that I could never have heart surgery again as it would be too taxing on my heart. I know I'm not allowed to donate blood as well, other than that just the usual antibotics for dentist, infections, etc.
To tell you the truth, my way of thinking, I don't really ever get depressed. Both of my kids are autistic, my son is on the low spectrum, can live on his own, has a fantastic job. My daughter is on the high spectrum and needs to be taken care of so don't really have time to be depressed. My husband left me after 20 years as he didn't want to have to take care of our daughter forever, I said good riddance! I believe we are all put here on the earth for some reason, what that reason is, who knows. In my case, so far, it is FOT, surgery in 1969, having two autistic kids, and then who knows from there, my life is still being written
48 years have gone by since my surgery, and to this day it still amazes me of where the technology has taken this surgery. I don't believe any doctor can tell a parent what to expect, how to react/handle the diagnosis, unless they themselves have gone through the surgery. I wonder sometimes, because of being on the heart/lung machine for over 6 hours, if I had a near death experience, that is why my outlook on life is what it is. Or maybe, lol, my brain didn't get enough oxygen and I'm a tad light in the old brain
Have you ever watched the movie "Something The Lord Made"? Alan Rickman stars in it, was a HBO movie. That is one of my favorite movies, as it tells my story, "Our" story! I think every parent of a TOF child needs to watch it, it does the soul good! We as TOFs are special, different, groundbreaking, full of life and ideas, we push the medical community to keep learning the whys and the hows. I am not sure they will ever find out what causes it, how to prevent it, as the movie states, it's "Something The Lord Made".
Captainkimbo sara1959
Posted
Crikey Sara, well done you!!!!
My wife has to deal with local schools that are having difficulty with kids with low level autism and ADHD and trying to get teachers to be come more effetive, so i do have alittle understanding how tuff that can be.
6 hours on bypass!!!!!!
I apparently was only 4 1/² hours "dead" as i like too think of it.
Heart murmer!!!!!! When i here people that have been told they have a layout murmer and are really worried, i do chuckle.... I have a fullale voice choir giving it all they have got after a drunken night on the town. Many a doctor have been reaching for an ambulance on first contact. Also the best one for me was i had to have a complete check over including chest xray for a job i was doing. I was living in Spain at the time. 2 days after my local doctor calls me to say i an required at the hospital immediatly but wouldn't say why. I got there really worried to be met by a cancer surgeon and translator. They where really concerned about a large shadow on my heart and wanted to do a biopsy immediatly. On showing me the xray i suddenly realised what they where looking at and starting too laugh. I showed them scar, explained i had a lump of fiberglass to sell up the hole.
The look on their faces of relief was worth all the worry they put me through.
And when they listened to my murmer, they where amazed.
On my last echocardiagram the man had problems viewing what he needed due to the scar tissue.
I will look up that film. My wife love Alan Rickman as she met him at univercity and got drink with him and his other actor friend in a little bar.
I don't depressed becouse of the TOF... That is a Joyous thing. E would be both be dead of it wasn't for it. So yes give thanks. Also as i was 7 i don't really remember it either. It's now after a pacemaker. I've been through all that and more in reliant on a couple of batterys stuck under my coller bone. It is a first world problems i know, compared to what you have to deal with
... On your own. That's amazing. Hats off to you.
To any one else reading this....... As you can tell, Sara and I are still here. Fully functioning. And like everyone else.... Doing the best can. In other words.....no different.
Just have some funny stories to tell sitting round the dinner table.
Kim
janco Captainkimbo
Posted
WOW Captainkimbo and Sara!!!
My "short" story.
Born 1971 with TOF, in South Africa, got my OP in 1976 when I was 5 years old, in Bloemfontein, South Africa (I bet you never heard of a place like (Bloemfontein).
Because of Chris Barnard's heart transplant breakthrough, we have some very good surgeons in South Africa.
I was told not to take part in contact sports, but I did for a while in school. I am in law enforcement and had to undergo various fitness tests. When I was enlisted they did not appoint me permanently because they first wanted to see if I would make it #$%&^!!
I did.
The only problems I have had is Atrial fibrillation (Afib, AF), I have started a blog about it because, I wanted to learn more, tell my story and hopefully inspire!
I played squash for many years, did some running, and mountain biking. Also did the Cape Argus cycle race of 109 kilometer 6 times.
Have 2 wonderful kids, who are actually very good in sports.
My wife did recently tell me that she did not think I would live this long ( due to the AFIB, doctor check-ups, my work, my sport, what doctors say when they see my EKG! and heart my murmur - it's a soft one!)
I think I am one of the happiest people I know, and don't take things too serious.
I feel I am blessed with this TOF.
Captain and Sara, I hope you see this post.
Janco Vorster.
sara1959 janco
Posted
Captainkimbo
Posted
oh yes. alive and kicking. just come back from helping out building a stage and bar at a folk festival. we were the alternative stage. not a single accordian or Banjo.
Life is good. pace maker not quite right. but getting there.
51 and still showing the young uns how it's done.
Kim
janco Captainkimbo
Posted
Thankful, grateful and very alive!
Captainkimbo
Posted
well just have to tell people of an amazing weekend i have had, i have been playing guitar (. badly) for many years and last year, teamed up with a local girl who had all the confidence smashed or of her with another band. i just knew she had something. and after 6 months we did our first real gig at the local pub. well apparently it has created a storm. we have 3 bookngs and possibly a few more nights in the pub. this is from some one who couldn't walk till 7 years old. this goes to prove that the old heart, patched up, a pigs valve, a heart murmur that can probably be heard over the microphone, can still be a rock star for 3 hours!!!!! well at least a legend in his local pub.
trouble is that even with a pacemaker, i still can't keep time??????. lol
ok just for reference, please call me Kim. Captain limbo comes from an old job when i worked on late private yachts. it's pretentious, so Km will do fine.
ok sleep time.
keep happy. stay positive. this TOF label is a label to be worn with pride and may i say... just a little smuggness.
after what we all have been through,, i LOVE life.
Kim