18yr old son needs valve replacement-HELP

[QueenVictoria]

I'm a newbie so any support is greatly appreciated.My 18 year old-6'6"-215pd son was born with congenital heart defect. Wolfe Parkinson White ( cured w/ ablation in 03') aortic stenosis, leak and fused cusp of that aortic valve.It is now dilated to a 5 and it's time for surgery. We are in the local N.Y. area. We have no idea what to expect from this surgery.My son is beyond upset. As his support system I don't know what to do. Can any of you experienced with this reply. He does not have Marfans syndrome. What's the surgery like, pain, recovery, timeline etc. A big THANK YOU.

 

[Adrienne]

Although my operation was a mitral valve repair, the fact that it is OHS, and the sternum is cut open makes it comperable as to pain, recovery, etc. I just want to tell you that it is not as bad as people imagine (not that I'd want to do it again, mind you). I had my surgery at 60 years old, and three weeks later I felt very normal. As far as the pain, I realize I am the exception here on this forum, but when I got home, I took NO pain medication at all. As long as I was still (didn't cough, move or SNEEZE ), it was just sore, but not painful. At the very beginning, of course, everyone is very weak, but everything is taken care of for you at the hospital, and then at home I'm sure you'll be doing a lot for him. My husband did all the cooking the first week home, but I actually got bored and kicked him out of the kitchen after the first week! How silly of me!! The fact that your son is 18 means he should bounce back pretty fast.

 

[Phyllis]

Welcome- you've come to the right place for support and research. You might want to start by reading the threads on valve choice and also there are quite a few good threads on questions to ask the surgeon, what to take to the hospital and how to prepare for recovery at home. As Adrienne said, your son is young and he will do fine. Don't hesitate to ask any and all questions.

 

[Shone'sGirl]

I'm 20, so I can understand what your son is going through. Although I got my valve when I was 9, I remember that I was sore for a while. It also hurts to laugh, so watching funny movies while recovering is a double-edged sword. I also coughed a lot. The lungs aren't used for a while so they fill up with phlegm and so I spent at least a week coughing it all up. That's probably the worst thing because coughing hurts so much. He should feel a lot better after a couple of weeks. Good luck!

-Clare

 

[Phyllis]

Here's the link on what to take to the hospital: http://valvereplacement.com/forums/showthread.php?t=13283
If you look in the Reference thread you will find a lot of good information and under valve selction this thread: http://valvereplacement.com/forums/showthread.php?t=14330

 

[juliek]

This is an excellent support group. You will get the best information here from a lot of kind and wonderful people.

 

[hensylee]

welcome to VR and thank you for getting as much information for your 'little' boy as you can. He is young and if his physical condition is good, he should have little trouble in recovery. He'll be sore, he'll have a few rules to follow to begin with (no lifting more than 5# at first, then 10#, then 15, etc), no driving for 4 or 5 weeks; he must exercise, do lots of breathing exercises, take it easy for awhile as recovery can be awhile and as mentioned here, he will be weak but strength will come back soon. He might want to sleep in a recliner once he is home as laying in bed can make him uncomfortable, but it can be done. He won't need to take much to the hospital - we have a thread on what to take to hospital. He will have a team following him all the time he is in the hospital, but you might want to be there with him as much as possible so that you can be his advocate.

Of course, we will have others coming in to welcome you and tell you of their thoughts. We have become a very large group and most of us have something to say.

If you have anything you can think of to ask, then ask away.

If you can get him to come in, too, that might help to ease his fears. He will soon discover that so many of us went through every single thing he is going through and he can talk and know that he is talking to people who know exactly what he's saying. Blessins.......

 

[Lynlw]

Hi I can help a little my son just turned 19 on the 12th and had surgery including a valve replacement in 05 when he just turned 17 and believe it or not (we still can't) needs another surgery already.He had other heart surgeries, but these were the 'only" ones as a teen. Justin got a pulm valve so has tissue. IF it helps get a pretty good idea of what it will probably be like, in my sig is Justin's page we keep to update everyone when he is in the hospital, if you go to the history and the beginiing of May 05 there is pretty good info about what he was going thru and when he was able to do things.
Where is your son having surgery? Most likely Justin will have his at Children's hosp in Philly, we were supposed to meet w/ the surgeon today,but he had an emergency so it was postponed.
feel free to ask us any questions, Lyn

ps here is another great group http://www.achaheart.org/ Justin isn't interested in joining any groups yet, but if your son is, there are quite a few people in their early 20,30s there

 

[MrP]

You say "it is now dilated to a 5"....does he have an aortic aneurysm?

 

[QueenVictoria]

Lynlw- rsvp from Queen Victoria

Lynlw- rsvp from Queen Victoria

Thank you SO much to send info on Justin. My son Scott and he are alot like. I'm glad to know we aren't alone. He is also not interested as yet to get involved in the forums. How did you manage through all this? I guess I'll be needing you alot for suggestions in helping me to face what's up for my son. You've been there before and experience is the best teacher. Please drop me an email if you're able so we can chat... It'd mean alot to me. I feel so alone, like this is all up to me to keep him "together". He is a teen and he'll recover from this alot faster than I will. I can see that already. I'm emotionally drained and we haven't even started this journey. Thank you again, Lyn. Best of everything.
Vicki

 

[Lynlw]

Thank you SO much to send info on Justin. My son Scott and he are alot like. I'm glad to know we aren't alone. He is also not interested as yet to get involved in the forums. How did you manage through all this? I guess I'll be needing you alot for suggestions in helping me to face what's up for my son. You've been there before and experience is the best teacher. Please drop me an email if you're able so we can chat...trotterleg@aol. It'd mean alot to me. I feel so alone, like this is all up to me to keep him "together". He is a teen and he'll recover from this alot faster than I will. I can see that already. I'm emotionally drained and we haven't even started this journey. Thank you again, Lyn. Best of everything.
Vicki

No problem, we'll get thru it, I just sent you and email, and put Lyn Justin's Mom in the subject, I'll talk to you tomorrow, Lyn

 

[QueenVictoria]

Dilated aorta

Dilated aorta

No he does not have an aneurism- it's a dilation of the aorta. I still am very new at this as we just got the MRI report yesterday. I don't totally grasp all this but I did ask if it was an aneurism(sp) and he Dr. said no. SO, I least I do know that.I did decide that his surgery will be in NYC as we live in the area. I figure that there have to be many wonderful cardiac surgeons right here w/o going to Mayo,ClevelandClinic or Houston Medical.Thanks for your care and rsvp.

 

[Curtsmum]

I know how scared you must be feeling (totaly different situation). My son had ohs when he was 18 months old, not had the valve replaced yet. My son had complications after surgery but once over them, you wouldn't beleive what he'd been through,recovered brilliant. If you read through some old threads you will see just how well most people recover, it will be hard but maybe not half as bad as you imagine. Its curts check up this morning and i feel sick as usual, as a mum it will always be a worry, stick around and you will get lots of help. Anyway just wanted to wish you best of luck, will be thinking of you both. Paula x

 

[WayneGM]

Welcome to the VR community. Sorry about the circumstances, but glad you found us. There's a diversity of experience here and we collectively have big shoulders to lean on.

I had a valve repair but OHS is OHS and I can honestly say that OHS was not nearly as bad as my fears imagined. Frankly, I've had worse experiences at the dentist (removal of 4 impacted wisdom teeth) . Not to trivialize it but I think because of the nature of the procedure, the doctors and nurses go to great lengths to take care of the patient. Pain was well managed and not bad at all. The staff really knew their stuff and made it all seem so "routine". While it's no picnic, all in all the experience was more "pleasant" (under the circumstances) than I ever imagined it would be. The worse part was post-op recovery as you recover mentally faster than physically so you have to restrain yourself from overdoing it until your body heals. I learned to pace myself and have lots of patience.

Best wishes to you and your son.

 

[Mike C]

Hi,
Just from reading, it sounds like he has a bicuspid valve and an aneurysm A dilated aorta of 5.0 is an anerusym. This is the most dangerous part and should be replaced soon, for me i would say next 1-3 months..

He is very tall, have you ruled out Marfans.

Also, not to cause worry, but many times the surgery is much more painful for a young male than an older individual. although he will ahve pain meds just may be aware so he can push through rather than be surprised.

 

[xbxb]

Surgery

Surgery

18 months go I had an Aortic root replacement and and a bicuspid tissue saving repair - I was an in shape healthy 42 year old.

Please tell your son - as one surgeon told me "the good news is that we know how to fix this". Your son has an excellent chance of being repaired successfully. And though it may not seem like it now, he is fortunate to know that he needs a repair. In 3 months he will be a new person!
I know I was scared before my surgery - but in looking back the mental aspect before the surgery is what is the toughest part. After - its the fact that it is a s-l-o-w - recovery - and you cannot speed it up.
The aorta is the more serious part of the operation- I would suggest you find someone that is an Aorta specialist AND a valve specialist.
By the way - tell your son at 44 I now play hoops 4x a week!
Best of luck and things will workout!

 

[Susan BAV]

Welcome to the site; glad you found it. There are several young people here, including young men who have gone through something somewhat similar to what Scott is about to go through, such as Lyn's son Justin. Another is the son of a member who posts as Briansmom. You can click on Search and then Advanced Search, or you can click on Members List, and research on what that member's son has recently gone through, successfully I'm happy to add! Scott may not be ready/willing to post here yet, but that doesn't seem to be uncommon. But you will find a lot of helpful information and will be able to share it with him. Please tell him hello for us and you both have our best wishes. Take care and post again. You will have lots of questions, no doubt.

 

[QueenVictoria]

Thank you all for your support

Thank you all for your support

Really you all have been so helpful and thoughtful. I am very lucky to have you all out there in cyber space. You all are the BEST!!!

 

[MRiordan29]

I am a little older then your son but somewhat similarly situated - aortic valve replacement in June of '06 as a 24 year old male (6'6" 195lbs). I currently live in Westbury but had my surgery in NYC. I entered the hospital on June 9th, went home 6 days later and was able to return to school at about 8 weeks.

Like everyone else has said the pain isn't nearly as bad as you would expect it to be. The main thing is that you feel wiped out and you just have to rest and give your body time to bounce back. I'm sure everything will go well for your son and I wish you both the best.

I'm not sure if you have decided on a hospital or surgeon yet and I would recommend that you take your time, do your homework and try to figure out what's best for your situation. However, I had a great experience with the hospital that I chose so if you are interested I would be happy to share some information.

 

[QueenVictoria]

Matt-RSVP

Matt-RSVP

Lucky to have you nearby. We're in Roslyn. If you have an IM would you contact my son at blastofawe. He read your post and would like to hear from you. Yes we want NYC too. I've heard of your Dr. but I don't remember how. Maybe he was once at NoShoreHospital.Tall, too....amazing coincidence/maybe not. Thanks for being there for us. All the best in your recovery as well. PLEASE get in touch with Scott.