mitral valve replacement surgery

[darc140]

My son is now 16 yrs old he has had a prior heart surgery in which they sewed his valve partially shut in 1994(he was 5)it held for 10 yrs but we were told yesterday he has to get an artificial valve .We are terrified and would appreciate any feedback on what to expect from the surgery as well as life changes after surgery.His biggest concern is no rough sports(which are his favorite)he really doesn't want the surgery,I think it is because hes scared,so are there any helpful things anyone can tell me to make him feel better about the surgery.It will be within the next few weeks.

 

[jenny]

Hi Darci, I had a valve repair in 1997 and all I can tell you is that after a few months I just felt so so much better. I was able to play tennis , go to a gym, ect...after a period of time....it totally enriched my life the repair. But like your son now I am looking at a replacement and to be honest I cannot wait to have it done for the past 3 months my quality of life is terrible. He will be fine and the surgeons out there are just great. His recovery time , I am sure, will be very fast because of his age. God bless him, and I am sure he will Jenny

 

[Ross]

I'm moving this to presurgery for some better exposure. In the meantime, it's hard to deal with a 16 year old. All I can say is that he must realize that this isn't a choice, it's a must. None of us wanted the problems we've had, but we're all had to deal with it. Hopefully he'll muster the courage to see what needs to be done.

Welcome to the forums. I'm sure others will respond soon.

 

[Christina L]

Can you see if he will get on this web site, to talk with others who had their mitral or aortic valves replaced at a young age?? I think at your son's age, talking with others who are in the same boat (or were in the same boat) would help.

We are all here to give him support and advice! I know this must be so nerve-wracking for you as well.

Christina L.

 

[Mary]

How about the possibility of those who have had the surgery sending pms in case he doesn't want to discuss it before the whole forum?
Can we print private messages off?
Just a thought.
Mary

 

[Karlynn]

Welcome!

You might share with him that the longer the surgery is put off, the more permanent damage is done to his heart and he will not regain all the abilities he wants to regain. Doing it in a timely manner, no matter how badly he looks at it, will ensure that he has the best possible chance of a healthy life.

Being 16 is tough as it is. Being 16 facing heart surgery is a real hard trip.

Encourage him to join here. We don't have any active 16 year-old posters, but we do have some 20 somethings.

 

[Karlynn]

My son has a fraternity brother that had his valve replaced at about 17, I think. The only reason my son knew about it was that he was in the basement laundry room with the guy and hears a clicking. Derek asked him if he had a mechanical heart valve. The guy looked surprised, said Yes, and asked how he knew. Derek told him that I had one and he recognized the sound. Derek says the guy participates in all their Greek athletic events (touch football, soccer, baseball, basketball) and all the other "social" things that come along with a fraternity.

We have some marathoners here, as well as tri-athletes and other very physically active "valvers". There will be some athletics he shouldn't participate in most likely, but there are so many he will be able to, that he should be able to remain active in some sport or sports.

Make sure you get good information on Coumadin use. That will be the most important aspect of managing life with a mechanical valve. We have a wonderful expert here, Al Lodwick, who has his own web site. I would encourage you to take a good look at it. With a mechanical mitral valve he'll need to keep his INR in the 2.5 to 3.5 range. Al's site is www.warfarinfo.com.

Keep posting for your own reassurance. And once again = Welcome!

 

[Guest]

If he is willing, have your son sign up here and talk to us. Or, have him read this thread. Either way, it may help ease his mind a bit.

Many of us have had multiple surgeries.

Myself:
1977 (approx 4 yrs old)
1987 (approx 14 yrs old)
2003, January (29 yrs old)

As people have already mentioned, he will feel better after the surgery. As for activities, yeah, he may be limited, but he can still be active. (Just ask people here...sometimes my schedule tires them out .)

Feeling scared is quite understandable as is not wanting to have the surgery. I've been there...right before my last surgery. But, I got through it...and am much better for it...in more ways than one .

Tell him to relax (yeah, I know...easier said than done) and enjoy life .

Cort, "Mr MC"/"Mr Road Trip"/"The Uniter", 30swm/pig valve/pacemaker
'72/'76/'79/'81/'87 & train & models = http://www.chevyasylum.com/cort/
Spotting MCs = http://www.chevyasylum.com/mcspotter/main.html
MC's Future = http://www.projectmonte.com/petition/

 

[Dee]

Welcome to the VR family!!

I had my mitral valve replaced about 9 mths. ago. I'm not 16 but have a 17 year old and a 14 year old and can only imagine how hard it would be on either one of them facing something like this. It would be tough.

But, speaking from my personal experience with OHS, I can also tell you and him that the anticipation is the worse part of the whole thing!! I had myself so worked up about it and once I was through and recovering I realized it wasn't as bad as I had anticipated. It's not a walk in the park, but it's not as bad as most people believe. The first 6 weeks are the toughest (as with most surgeries), but things really start getting better after that. They are really good at managing the pain while in the hospital and once I was out of the hospital I only took tylenol....got rid of the pain pills. One of the hardest parts for me was not being able to use my arms much at first...they don't want you to move that chest around much and using your arms will do that.

As far as being active again, he will be able to do most anything....playing full contact football might be an issue mainly because of the Coumadin. A hit to the head can cause bleeding on the brain when you're on blood thinners, which everyone with a mechanical valve has to be on blood thinners for the rest of their lives.

I tried to look at my situation and surgery as a blessing that they were able to fix the problem and that I would be able to lead a normal life again. Nobody wants to go through something like this, but if that's the hand we're dealt, then we have to take on the challenge. He has a lot of life ahead of him and he can look forward to living it with a shiny new heart valve! I felt like I was given a second chance.

You will find lots of support and information here. Please keep us informed about your son and incourage him to get on here too. We're only here to help!

~DeeDee~

 

[Bryan B]

Darci,

I'm not a teenager (although sometimes I act like one ), I am 43 and had a Ross Procedure in March. You didn't mention which valve your son was having replaced, but if it's the aortic valve you might want to discuss the Ross Procedure with your doctors. With a Ross Procedure, they take the patient's pulmonary valve and put it in the aortic position (called an autograft). Then they put a homograft (human cadaver) valve in the pulmonary position. The big advantage this surgery would offer to your son is that since the autograft would be your son's OWN native tissue, it would grow if he continues to grow. Also, if all goes well he would not have to take Coumadin using the Ross Procedure (all I take is an Aspirin once a day). With a mechanical valve, if he continues to grow he may "outgrow" the mechanical valve and need it replaced again. If you go with a tissue valve he will definitely need it replaced again, and tissue valves in younger patients tend not to last very long. If his doctors think that most of his growing is done and they can put in a mechanical valve that he won't outgrow then that may be the better choice. The mechanical valve will require Coumadin, which in all likelihood would prevent him from playing contact sports in school.

Feel welcome to ask any questions you may have about the Ross Procedure or you can send me a private message if you would like to hear more about my experience with the Ross. If I were a teen and the surgeon thought I was a good candidate for this procedure I wouldn't hesitate to select this procedure. It's a more technically difficult, longer, and slightly higher risk procedure, but I felt the advantages outweighed the risks. So far (4+ months) I'm very happy with my choice.

Good luck in the coming weeks and stay in touch!

P.S. You can also tell your son that the surgery experience is pretty jacked up, but kind of krunk at the same time. (translation...messed up, but kind of exhilarating at the same time). I liken it to bunji jumping or skydiving...scared as hell to jump but when it's all over your like wow, that was a rush!

 

[dawnwit15]

Hello

Hello

Darc140
Welcome aboard. I understand how terrified you must be. I'm one of the 20 something's Karlynn wrote about on this site. My first valvulosplasty was done at age 28 and most recently, open heart, mitral vavle repair this past January at the age of 29. My parents were a wreck, I think it's tough to witness your child having to go through this at any age. My thoughts & prayers are with you guys.
I was scheduled for a valve replacement with a pig valve however once the surgeon opened my chest, he decided the best option was to do a repair instead. Prior to surgery, a decision for the pig valve was made because I have an active lifestyle. I am a parole officer and my job requires alot of physical activity. I also enjoy running and working out. The mechanical valve just did not seem the right choice for me at this time in my life. However, I did have to face the fact that the pig valve may need to be replaced within the next 10-15 years, whereas the mechanical vavle would be good for life. That is a personal choice I made, not only because of my lifestyle but also because I wish to have children in the near future and did not wish to risk a failed pregnancy due to using blood thinners which I believe are mandatory with a mechanical valve.
If I may make a suggestion, I know it helped me deal with the whole heart surgery, see if your son may be open to seeking counseling. I found it easier to express my thoughts, fears and emotions to a licensed social worker rather than my close family and friends believe it or not. Your son is probably really scared and is probably going through the "why me" stage of pre-surgery. Even for an adult, it was the most challenging time of my life. But please stress to him, that once the surgery is over he will be able to enjoy a long and healthy life. "This too shall pass"
Please feel free to private message me at any time or if your son feels comfortable please have him send messages to us here at this site. This site is a god send and really helps you realize, your not alone.
Best wishes,
Dawn

 

[Bryan B]

Darci,

I just noticed the title of your post was "Mitral valve replacement surgery". I'm going to have to blame my prior post on pumphead.

Now that I'm clued in, I do think a mechanical valve is probably the best option for your son, which does mean Coumadin. He may have to give up contact sports, but that does not mean he can't play any sports or be an active and normal teen. Growing up I loved any sport that involved a ball, but my doctors told my parents to steer me away from contact sports due to my heart condition. They bought a house on a golf course, and since I liked all sports I naturally gravitated to golf. I guess what I'm trying to say is that he will adjust to his limitations and there are plenty of sports that he should still be able to compete in. BTW, golf is a much "cooler" sport now than when I was in highschool.

 

[Gemma]

Hi Darci,
My boyfriend got a mechanical aortic valve last December, aged 26. He was never keen on contact sports, but loves mountain biking and motorbiking (on road at the moment but he's saving for a trials bike). At 2 months post-op, his cardiologist basically told him he could do whatever he wanted. I do think that in England doctors tend to not worry their patients by warning them of risks, assuming that if there's a problem in the future they'll just deal with it (you've heard the phrase "trust me, I'm a doctor" - that's British docs for you ) whereas in America you get ALL the risks outlined upfront. I guess the middle ground is best - be aware that your son will need to take a bit more care about injuring himself, but having a mechanical valve and taking coumadin will not be the end of his fun.
Open heart surgery is by no means a walk in the park, but many people who have also had other surgery (or given birth) have said in the past that in comparison, the heart surgery was less painful. And as several people have already said, not having the valve replacement is really not an option.
It's tough, but you'll get through it.
If you do a search you'll probably find most of the answers you need, but if there's anything at all you're wondering about, ask away - someone's bound to know the answer. I know I've asked some stupid questions in the past but you'll get an answer no matter how strange you think it sounds .
Gemma.

 

[skimomck]

Darci,
We are new to the site also. My son Teddy had his first surgery when he was 16. He was quite angry at first and thought everyone was over reacting at the timing and begged to wait for 6 months because he didn't want to miss ski season. But within a few weeks of the date he was very accepting of the whole thing and went into surgery with a lot of peace and he was confident and seemed to have a lot of trust in the surgeon. We traveled across the country(almost) but the entire event went smoothly. I guess my advice would be to let him express himself and give him as much say about what will happen as you can allow. We are now facing surgery again and my son went on this morning and read all the postings. He hasn't wanted to post himself yet, but maybe that will happen soon. We have a cath next week and we will know about surgery soon.
Cindy