New and scared

[Lauren1982]

My name is Lauren and I am a 23 yrs old, born with Tetralogy Of Fallot.
I had a shunt performed at 6 weeks old, having the full repair at 10 months old. I was told 2 weeks ago by my cardiologist 2 weeks ago that I will have to have a leaky pulmonary valve replaced in 1 to 2 years at the maximum.

I can't remember much of what my cardiologist told me. This was due to the fact that I was totally flabagasted by finding out about the surgery, and on a not so serious matter; me focusing on my cardiologist clumped mascara. It's a she! The only things that I can remember my cardiologist saying is they will be using a donor valve, there will be no issue with rejection, and my previous open heart surgery scar will be used.

I have found it really hard to deal with having surgery, and I am really scared. I am so so glad that I have come across this site, I have my friends to talk to and that is great. But I really need to converse with people who understand about valve replacement.

Another reason I am scared is because last year I had 2 major operations on my bowel to prevent me getting cancer; and to have to go through surgery so soon, to put it politely scares the bejesus out of me. But I am glad that the valve replacement wont be for a couple of years at the most, it will give me time to get my head around it. With my first bowel surgery last year I was only told about 6 weeks beforehand, and during that time my father passed away.

So I am glad to be going into this surgery with a much clearer head, and having found this site will help me a great deal

 

[dj/utvolsfan]

Lauren,
Welcome! You are such a young thing to have gone through so much already. Major surgery is never easy, losing your dad had to be devastating, then turning around to face yet another biggie.....OHS, wow! That's alot to handle. I admire your courage and your attitude. You can do it. This site is such a friendly place and we will have you so prepared and confident for surgery, it will be a piece of cake.
Fire away with any and all questions. You'll find answers here as well lots of comfort.
Best of luck to you!
Debbi

 

[aussiemember]

Hi Lauren!!! And welcome - I'm from Melbourne too and there's a number of other Aussies around here as well

There's heaps of great advice to be had from the people on this site - ask all the questions you can think of!!! I am due to have valve replacement in the next couple of years also, and it certainly scares me at times too but it is great to read of the many success stories on here.

Take care of yourself. - Jeanne

 

[OldManEmu]

Another Aussie

Another Aussie

Welcome aboard Lauren. We now have a number of active Aussie members. I am not shaw if any of them have TOF. I am not familiar with TOF other than itcausing an increased risk of endocarditis. There will no doubt be other members along that advise on their experience of TOF surgery. While not something you want to go through with 1700+ members VR shows you have a good chance of success. The cardio is a bit of a worry if she can't even apply makeup properly.

 

[marky]

Welcom Lauren
You definitely found the right place for answers, guidance, support and a good laugh when you need it!

Wow you have had lots to deal with in the past 2 years.. I am sorry about that.

I am not familiar with your medical condition, but the best advice i can offer is get as much information as you can. This site is a great place to start!

Welcome aboard VR.com and ask away!

 

[ALCapshaw2]

Welcome to our World Lauren !

Being told you need Open Heart Surgery tends to knocl one off their feet doesn't it? You are NOT alone in that reaction!

The GOOD NEWS is that it was discovered early which gives you an EXCELLENT opportunity to have the problem FIXED before any *permanent* damage is done to your heart.

The 'other' GOOD NEWS is that while Valve Replacement Surgery Major Surgery, it is a highly refined art. Success rates for patients under age 60 are over 98% when performed by an experienced surgeon who does VR routinely at a high volume hospital. Just remember, every member here is either a Survivor or family member of a Survivor. If we can do it, SO CAN YOU!

Even more GOOD NEWS is that compared to abdominal surgery, Open Heart Surgery is a 'piece of cake'. Almost everyone reports that the surgery and 'discomfort' were WAY LESS than they imagined.

There are two reasons for this:
(1) the center of the chest has NO muscle to cut through
(2) Pain Control / Management is well done.

Most of us report only mild 'discomfort' of the chest.
Several do report INTENSE Back and/or Shoulder MUSCLE pain from being stretched beyond normal range of motion. MASSAGE is the treatment of choice for those muscle pains. It is FASTER and BETTER than any pain pill!

You can learn a lot about what to expect and how to prefpare for your surgery by browsing in the Pre-Surgery and Post-Surgery Forums.

Feel Free to ask any questions that come to mind. Most likely someone on this site will be able to field your concerns.

'AL Capshaw'

 

[bvdr]

Welcome, make yourself at home and plan on spending some time with us. We have old members, new members, and people with about every imaginable heart disorder that can lead to valve surgery. You will find information that will really significant to you as well as coming to the realization that there are many other people going through or have gone through the same emotional upheaval you are. Believe me, there is loads of experience represented here.

I agree with Al about abdominal surgery. I've had two abdominal surgeries and found both of them to be more painful than OH. I was weaker and more short of breath after than I expected but the pain was less. Again, welcome!

 

[pipersmith]

Welcome !

Welcome !

Just wanted to welcome you to this wonderful home! I am new here myself and can testify to the support and broad base of knowledge available from these awesome people.
Nothing offered me the comfort that I found here, so keep reading and posting.
Best of luck to you!!!!

 

[BDMc]

Welcome!

Welcome!

Lauren, I'm glad you found us. I had my surgery many years ago, and only discovered this site last year. I still find it both a helpful resource, and great place to find courage and inspiration. It is a terrifying thing to have impending OHS dropped in your lap unexpectedly. You have some time, and that is a blessing! I'd think it would be helpful to talk to at least one surgeon. I think valve choice is a great thing to have (I didn't) and would say research them for yourself. Then talk with cardiologist and surgeon about it. Knowledge goes a long way toward dealing with one's fears. As much as you can, make your own decisions. Make them based on facts, and your deeper feelings, not your fears or anxiety. Every new member enriches our little community, so thanks for joining us! Keep us posted! Brian

 

[Barbara Stewart]

New and scared

Lauren,
Welcome to our website. YOu are lucky to have found it so soon in your walk toward surgery. I also don't know anything about your condition, but I know about loss and you are losing a lot in your young life. Stick around and I think you will find comfort, support and companionship. You will even find humor, and that's the best part.
Again, welcome
Barbara

 

[Debbrn]

Dear Lauren,

Hello.

I am also a TOF patient. I had my BT shunt at 6 weeks, "repair" at 6 years and pulmonary valve replaced with a cadavar valve when I was 25. I am now 40. I had all of the same emotions that you had before I had my valve replaced. I was in the hospital for 8 days, but only felt real bad for 2-3 days. I took 8 weeks off of work because I have a physically demanding job.

I am also a member of the Adult Congenital Heart Association. There website is www.achaheart.org.

Debbie

 

[Lynlw]

Dear Lauren,

Hello.

I am also a TOF patient. I had my BT shunt at 6 weeks, "repair" at 6 years and pulmonary valve replaced with a cadavar valve when I was 25. I am now 40. I had all of the same emotions that you had before I had my valve replaced. I was in the hospital for 8 days, but only felt real bad for 2-3 days. I took 8 weeks off of work because I have a physically demanding job.

I am also a member of the Adult Congenital Heart Association. There website is www.achaheart.org.

Debbie

Hi Lauren and welcome, my son has a CHd close to TOF (TGA) he is 18 and had his pulm valve/conduit replaced last may. Debbie beat me too it but I was also going to suggest you join the acha forums too, since there are quite a few members there w/ TOF. does your cardiologist specialize in adults w/ CHD? if not i would really suggest you find one.
I'm sorry you have been thru so much and losing your father on top of it. Lyn

 

[temp69]

welcome!

welcome!

you've come to the right place. We try to be supportive, god knows this site really helped me. I don't have any experience with stents, but I've been through OHS and am doing better every day, just like you will.

good luck!

 

[Lauren1982]

I have just read all the posts from the thread that I posted yesterday, and I can say for sure that it has put a smile on my face.
To Debbie, thank you for telling me about the acha website, I am sure that I will benefit from it.
And to Lyn, my cardiologist is very well respected (even with the mascara!!), and was recommended to me by one of the most respected children's cardiologists where I am from. Those from Australia may have heard of the Royal Children's Hospital in Melbourne.
I guess that I am jsut frightened of the unknown right now. So I will be for sure coming to this website for sure over the coming months.
Once again thank you from Lauren

 

[davidfortune]

Lauren,

Welcome. Glad you found us - sorry for the reason. Take Heart.... (sorry couldn't resist the pun) the many members here are an inspiration. At least they have been to me...

Thanks to all of you by the way. You all have been an invaluable resource and a tremendous source of comfort as I weave my way through this journey of life with an unexpected OHS looming.

It is interesting to me to hear a cardio setting timeline projections 2 years out. My response is that he really doesn't know - it may end up being much longer than that. I think the appropriate philosophy at your stage is watchful waiting while taking the opportunity to become educated.

I was just talking with my surgeon last week regarding pulmonary issues - since I am considering the Ross. The discussion was strongly centered around catheter based valvoplasty if the pulmonary issue is stenosis. He commented that they are handling most stenosis related leakage without OHS at this point with a very high sucess rate. Something for you to investigate perhaps.

Also to be aware - if you have to have pulmonary replaced with a donor valve - the replacement valve MUST NOT come from a female donor. Female donor pulmonary valve have a tremendous stenosis rate (something like 30%). This issues is statistically similar regardless of the gender of the recipient. My surgeon stated that they no longer utilize any female donor valves (don't know if that is a universal philosophy yet).

Best of luck as you watch, wait, and learn. Don't let it consume your life.

 

[benmckelvey]

Hey Lauren

It's a shock, hey? I just turned 30 and it feels like I'm too young for this stuff, I can't imagine how you feel.

A couple of weeks ago I was running for a bus (just a couple of days after running the city to surf), clutched at my chest and ended up at St Vincents in Sydney having had a heart attack. Anyway, turns out I need a Valve (Aortic) replacement. Dr Three weeks and counting. I'm terrified.

Don't know where this is going, but just wanted to let you know that you're not the only Aussie doing it a little tough. Dr Philip Spratt is doing the surgery- anyone know of him?

Anyway, all the best for the coming years.

ben

 

[aussiemember]

Hi Ben,

Welcome to our forum - us Aussies are taking over Just wanted to say you've come to the right place - ask all the questions you can think of - I haven't heard of your surgeon as I'm based in Melbourne - must have been a huge shock for you to find out the way you did - especially at your age - let us know how everything goes -

 

[Lauren1982]

Welcome to the aussie invansion on this site Ben and thanks for your post!
This site is just the ultimate, all the questions that I have and even the ones that I have not given any thought to are right here at my fingertips.
It is a shock to anyone finding out that you have to go through heart surgery, but at least you have fond out before it was too late. Good luck with everything

 

[davidfortune]

Ben,

Welcome as well. Feels weird doesn't it. I'm too young and healthy for heart problems. Anyway we're here with the issue at hand. Find the best surgeon you can. Make your decision on valve choice. Climb the mountain and let us all know when you're over the top.

Hopefully you have gotten some good info searching here. Definitely many people who can encourage and inspire hope for an active and long life after valve replacement. Check out some of the picks of our more active members - mtkayak just recently posted a few (sucks for those of us couch potatoes who are now getting back into shape so we can recover faster/better/easier - wow that's just why I want to spend an hour on the elliptical trainer.... faster recovery I was gonna post pics of me and the dogs watching 24 but got intimidated with mtkayaks pics and decided against it....). Anyway glad you found us. Good luck

Keep us posted on your decisions/questions/progress.

 

[gijanet]

Lauren...........

Lauren...........

Just wanted to welcome you to the group and send you lots of hugs. You have had a lot to deal with! I'm glad Debbie mentioned the adult chd group as I think you will find many TOFers there who also thought they were "fixed" for life until they were jolted into reality. A rude awakening for sure. A former student dropped by to see me last year. She has TOF and thought she was repaired for life, too. She received the same rude awakening you did at her annual checkup and was devestated to find out that surgery might be looming................

I'm glad you have some time to adjust to this newest development. Defintely look into a surgeon who specializes in adult chders. We are here if you need us. Hugs. J.