Multiple valve replacement

[sir_dan]

Hi guys,
I was born with heart defects, and because of this am lining up for my 6th open heart surgery operation at aged 28 in 14 days and counting. I have had my pulmonary valve replaced twice before, but this time I am supposed to get both the pulmonary and aorta valves replaced. I guess i am a little (lot) scared about it as I feel I have just entered a phase where I have a lot of living yet to do and really don't want this to end me now.

I am just wondering if anyone out there knows how big the risk is for an operation like this? Do many of these operations happen? Because i have had a few operations before, does that greatly increase my risk this time (due to scar tissue around the heart)? I live in Australia and my specialist here gave me the talk of it being a high risk operation, etc. but he is only very young and actually quite slack (When he gave me that talk, I was supposed to be seeing him so he could let me know a date for my operation... I later found out he hadn't even sent his referral letter to the surgeon yet, so figure that this "chat" was a time filler and may be a load of crock). The surgeons office however seems a lot more positive about the operation.

Can anyone lend me some help on this matter?
Cheers
Dan

 

[Curtsmum]

Wow Dan, my little boys is having his second surgery in a few weeks and i thought that was bad. You have been through so much, gives me hope.
Sorry i can't answer your questions but wanted to wish you the very very best. I am sure if you have done it 5 times before you can do it again, are you in good health at the moment?.
You have youth on your side. Sending hugs thoughts and prayers, will be thinking of you, all the best.

 

[Phyllis]

Welcome, Dan. I can't answer your questions, but would like to put you on the calendar so we can cheer you along as you climb this mountain. Is July 2nd the date for surgery?

 

[sir_dan]

I am in Australia and my operation is on the 11th of July. I have done some reading of late and it seems the valve replacement ops are becoming more common practice nowadays. Just need someone in the know to tell me I can do this. I'm pretty strong willed so will fight this regardless.

 

[Phyllis]

I like your attitude and wish you well. I will add you to the calendar for July 11th

 

[Cooker]

Dan...Welcome to the zoo....Man, you have been through the mill....I don't have any information but there are a few double replacements here so I am sure thy will chime in....wishing you the best.

 

[Turkey Hunter]

Hi Dan and welcome.
I have only had 1 OHS and I did have both the aortic and pulmonic replaced with the Ross Procedure I had 8 years ago.

Yes, valve replacements are becoming more and more common all accross the globe.

Keep the good attitude and only look towards the possitive side of the situation.

Ben

 

[Karlynn]

Welcome! We have some members who also belong to the Adult Congenital Heart Defect site. I hope one will wander on in here to help you out. They speak of adults on that site that have had several surgeries. I'll email one of them to have them come on and read your story. Best wishes!

 

[A New Beginning]

I am going in for my second surgery on July 9 and I too am scared. You will be in my thoughts and good luck with everything. It is nice to have a group to talk to before and after my surgery.

Aja
Mitro Valve Replacement

 

[Jkm7]

Hi Dan,

My goodness you certainly have been through a lot and I am so sorry to hear you face another OHS.

I just had my second and did well. Of course, that pales by comparison.
Your youth and strong will work so well in your favor.
Happy you have found our group and hope you will stay with us to help you through.
Sending you very best wishes.

 

[Jkm7]

I am going in for my second surgery on July 9 and I too am scared. You will be in my thoughts and good luck with everything. It is nice to have a group to talk to before and after my surgery.

Aja
Mitro Valve Replacement

Hi Aja,
I wouldn't want your post to not be noticed. Happy you found us and have posted.

I just had my second OHS as I just mentioned above and it was easier on me than my first.

Hope we can help you along, as well.

 

[WayneGM]

Welcome to VR, Dan. Sorry for the circumstances but glad you found us. You've certainly been through a lot. I can't offer any answers to your questions, but I'm sure you are up to it as you have a great attitude. Also, if your Surgeons office is positive about it and I am sure they are confident that you can handle it. Best wishes and good luck.

 

[Karlynn]

Welcome to you too Aja! Start another thread and introduce yourself.

 

[njean]

Hi guys,
I was born with heart defects, and because of this am lining up for my 6th open heart surgery operation at aged 28 in 14 days and counting. I have had my pulmonary valve replaced twice before, but this time I am supposed to get both the pulmonary and aorta valves replaced. I guess i am a little (lot) scared about it as I feel I have just entered a phase where I have a lot of living yet to do and really don't want this to end me now.

I am just wondering if anyone out there knows how big the risk is for an operation like this? Do many of these operations happen? Because i have had a few operations before, does that greatly increase my risk this time (due to scar tissue around the heart)? I live in Australia and my specialist here gave me the talk of it being a high risk operation, etc. but he is only very young and actually quite slack (When he gave me that talk, I was supposed to be seeing him so he could let me know a date for my operation... I later found out he hadn't even sent his referral letter to the surgeon yet, so figure that this "chat" was a time filler and may be a load of crock). The surgeons office however seems a lot more positive about the operation.

Can anyone lend me some help on this matter?
Cheers
Dan

OMG Dan --- I am almost without words after reading your post & trying to visualize what you have been thru in your young life. I can relate to the terror you must feel at having to go thru this all over again!

I have had OHS 3-times & was told a year ago, that I would need a 4th surgery to replace my mitral valve again. My first two surgeries were in 1975 for a double-valve implant (mitral & aortic). (I was 24 yrs old at the time). In 2006, I had the old aortic valve swapped out w/a new valve but nothing was done to the old mitral. A year later, it started to malfunction & that's where I am today.

I am now being told that the risks are too high to have a 4th surgery because of all the pannus (scar tissue ) involved. In other words, the doctors are saying that the "risks outweigh the benefits" or "leave well enough alone!" I'm not comfortable w/that however, & not too willing to accept that yet, and I need to get more answers and/or more opinions from other medical professionals.

In your case, your youth & overall health however, is what is going to pull you thru this! You must remain strong & focused & willing to accept nothing less than making it thru this & going on w/your life!

You will be in my prayers & I wish you nothing but success in your upcoming surgery.

Please keep us informed & God Bless you!

 

[ALCapshaw2]

Sorry to hear that you have had to undergo so many OHS Dan.

I can't help but wonder WHY you needed so many?
Were the repeats all due to valve failure? or other failure?
If so, what kinds of valves failed and what were the failure mechanisms?

As for your next surgery, I would hope that you are going to a Very Experienced Surgeon, one who has done many re-do's with good results. This doesn't sound like a surgery for a young Doc who is still learning the ropes!

In that vein, you should ask those questions of this 'seasoned surgeon'. You are beyond the scope of most Cardio's and Young Surgeons.

 

[Lynlw]

Hi Dan,
I can sort of understand how you are feeling since my 20 year old son had his 5th OHS last summmer (those darn pulmonary valves/conduits were a couple of them) and he had 2 more surgeries that weren't OHS (to remove his pacemaker from his abdomen and an infection) but I don't know exactly how you feel because it wasn't ME having the surgeries. Karlynn let me know you were here, and I agree with her the adults with CHD forum is also a great place to post, many of the people there are in there 20s and 3os and have had multiple surgeries. http://www.achaheart.org/ If you don't mind me asking what are you CHD/surgeries? Justin has TGA, VSDs and Pulmonary stenosis so his first 2 surgeries were a BT shunt and his main one was a Rastelli where he got a conduit from his right ventricle to his pulmonary artery, all the surgeries after that were to replace or cut and patch sectionss of his conduit.
As for the risks, each surgery increases the odds scar tissue being built inside the chest, but from what I've observed, it seems a good indicator for multiple surgeries is how much scar tissue you had in your previous ones. BUT even there it isn't terrible, because experienced ADULT with CHD surgeons have alot of expereince with multiple redos and know what to look/watch for and what to do about it. Justin builds ALOT of scar and his heart is very forward in his chest, so his last few surgeries his heart was stuck to his sternum, which is one of the more dangerous parts in redos since you can cut the heart during the opening of the chest BUT Experienced adult with CHD surgereons are getting very good about knowing the safest way to open even chest's like Justin's.
I don't stop by as often so feel free to emal me if I can help. but I really recommend also joining the forums at ACHA. I'll keep you (and your parents) in my prayers. Lyn
ps a couple weeks ago, Justin got his first tattoo, it is a zipper at the top of his scar.

 

[Jan]

Hi Dan

Welcome to Valvereplacement.com, you will find a wealth of support here from our members who I am sure will answer you soon.

I have only had one AVR so cannot comment on your situation but rest assured you will be in our thoughts and prayers on July 11th

Hugs


Jan

 

[Jan]

Hi AJA

Welcome to Valvereplacement, you have found the best site for Information.

tell us a bit about yourself and your situation


cheers


Jan

 

[sir_dan]

Wow, thank you for all the support guys!

Its nice being able to hear from people who have been there, done that. I appreciate how everyone has been so positive yet understand the concerns. My friends are all positive in their encouragement to me, but its a bit shallow to me because they just don't understand the situation.

 

[Phyllis]

I am going in for my second surgery on July 9 and I too am scared. You will be in my thoughts and good luck with everything. It is nice to have a group to talk to before and after my surgery.

Aja
Mitro Valve Replacement

Sorry, I am late to this post- I will add you to the calendar for July 9th, Aja.