You might try looking at the Marfan Foundation site because they have a forum on there just for teens and what all they have went through. Also, you can try the Loeys Dietz site too. These 2 are connective tissue disorders that really affect the heart. Not saying that your son has one of these conditions, but you might find the forums helpful to get some information.
Hope that helps. Myself, my oldest son and my daughter have all had open heart surgery to repair our an aneurysm in our aorta. Haven't had to mess with the valve yet, but you just never know. Take Care
What kind of valve to choose for a teenager is a hard question, but whatever valve you choose will be better than the one he has.
In addition to the resources Younique gave you, the Bicuspid Aortic Foundation also has good website.
Thanks Younique1 & Skydnsr,
These are more usefull avenues to look into. We still have 3 weeks to make our decision and any help is greatly appreciated.
I would want to know how long the doctor thinks the mechanical valve will fit him.
But there are a lot of other things to think about, too. As I said before, it is a hard decision. But whatever you decide to do will help him. Hopefully one day during his lifetime, we will have an artificial valve that will last for a lifetime and will not require anticoagulation. We don't have it yet, but I believe we will.
I think there are some support groups out there for parents of "heart kids." I can't give you a link, but I know there is a network.
The surgeon thought he had grown enough that a mechanical valve size would not be an issue. Just for referrence, he is 5'7". The doc said even if he grows to 6' that would not be a problem.
Well, that is a point in favor of the mech valve. However, with teenagers, as I'm sure you have thought about, there is a concern about whether a person that age would comply with taking coumadin consistently, and with a teenage boy, there is a concern not to limit him in regard to contact sports, motorcycles, four-wheelers, etc.
Coumadin is not as bad as all that. I've been on it for over five years. But then, I'm in my 50's, so that's a very different situation from what a teenage boy would be looking at.
I sent you a PM that may be of some help. Lets us know.
You are correct, coumadin is a concern for a 14 yo. Right now he is on medication. Between Mom & I, we still remind him every day and in our busy world, even we forget.
My son & I enjoy the outdoors (hunting/fishing/hicking). This would force him to use the buddy system. If an accident happens in the woods while he is on coumadin and he is alone, that is a concerne.
Mom & I are including Son in all information. We want him to feel comfortable with the decision. After, this is his body and he'll have to live with it.
We appreciate all the help y'all have given us. We have learned so much this last week. A lot more to go. We're still receptive to more comments.
A person can hunt, fish, and hike on coumadin. I do not see any need for your son's lifestyle to change in that respect, should he go on coumadin. People seem to have a vague idea that you can't be "active" while on coumadin, but that is not true. The only activities that I would be concerned about would be those I mentioned above -- things like contact sports, motorcycle riding, and four-wheelers -- in other words, activities that impose an ongoing risk of head trauma. Even then, it might be possible to engage in those things in a cautious or limited way, while wearing a helmet -- although there are far too many football concussions for me to think that football helmets prevent those. I would say that he just can't do contact sports, if he is on coumadin.
Being on anticoagulation therapy (ACT) does not mean that the person will not stop bleeding when injured. It is not like being an "artificial hemophiliac," as I have heard it put. Those are the myths of coumadin. In fact, being on ACT only means that bleeding takes a little bit longer to stop -- usualy only seconds longer -- than it does for a person who is not on coumadin.
If someone were to cut himself while on coumadin, he would stop the bleeding in the exact same way that he would if he were not on coumadin, by applying direct pressure. The necessity for use of pressure points or tourniquets would be rare, just as it is rare for people who are not on coumadin. Let me put it this way: if you are on coumadin, and you happen to cut yourself so badly that the bleeding cannot be stopped, then you would be in the same situation if you were not on coumadin. I won't go into gory detail, but think about the kinds of wounds I am talking about. Occasionally, people get a stab wound or a gunshot wound that bleeds out so fast and heavy that their lives cannot be saved, and hardly ever are they on coumadin.
What the head of the hematology department at Baylor Medical College in Houston stated to me was, "We can stop a bleed anywhere except inside your head." That makes sense, because you can't apply pressure to the inside the head. If you are on coumadin, and expecially if your INR (which is how they measure the anticoagulation level) happens to be too high, then you will be at greater risk of a brain bleed than most other people -- IF you suffer a severe blow to the head. I'm talking about a blow of sufficient intensity to cause a concussion -- not just the silly, everyday bumps that are an occasional part of life. A severe blow to the head is not an everyday occurrence. I've had one cuoncussion in my life.
It's not that you will absolutely suffer a brain bleed if you get a severe blow to the head; it's just that you are at higher risk. The risk of intracranial bleeding from head trauma can be minimized in two ways: by keeping your INR within range and by not doing things that put you at high risk of head trauma. In other words, don't do crazy things, like bicycle stunt riding on the roof of a house. But if you had to pick a demographic group that most frequently engages in crazy stunts, it would be teenage boys. Just browse through youtube.
So in my opinion, and I invite you to check this out with a hemotologist for yourself, hunting, fishing, and hiking are fine activities for people who are on coumadin. As far as the buddy system goes, anybody who ventures into the woods should have a buddy with them -- if not within sight, then available by cell phone or walkie-talkie, and close enough to get there to help in case of an accident. If you look at the stories of people who did get lost, seriously injured, or even killed in the woods, many or most of them would not have been in the situation they were in if they had notified a buddy of their exact whereabouts. Most of those stories that I have read were about adults, and none of them that I have read about were about people who were on coumadin. The way to stay alive and well in the woods is by using your brain, period.
I like it that you are including your son in all decisions. He is old enough to take part, and it is his life. In some ways, he is having to grow up faster than otherwise, but that is not entirely a bad thing. Please understand that none of my comments are intended to try to influence you toward choosing a mechanical valve, because valve choice in this situation is not at all clear-cut. Your son will have to choose the valve that he and your family think is the best option for him. But I did want to take the opportunity to clear up some of the myths about coumadin. There are a lot of horror stories about the drug that are just not true. It is a serious drug and it is not to be taken lightly, but it is a drug that you can live with happily if you need to, and you can have an active lifestyle.
As far as remembering to take medication consistently, I use a 7-day pillbox so that I can see the next day if I missed anything. One missed dose of coumadin can be made up. I wouldn't want it to happen very often, but it has happened to me -- for instance when I got out of my normal routine and just, well, missed a dose. That is another thing where, if you die or have a stroke because you missed one dose of coumadin, then well, your health was pretty much right on the ragged edge of survival, anyway. I'm not making light of it. I'm just saying that that is another myth of coumadin, that if you ever miss one dose, you will suffer die or have a stroke. You should try very hard never to miss a dose, but if it ever happens, you are probably going to come through the experience intact, as long as it does not happen very often -- especially with the mechanical valve in the aortic position and assuming no other risk factors for clotting are present.
Don't get me wrong. I wasn't downing the drug at all. Nor was I downing forming a habit of taking the drug. I was just stating that was one of the minuses of this type of proceedure.
There are 2 proceedures we are weighing heavily on: mechanical valve and the modified Ross proceedure. We are banging around the pros & cons of both operations.
I appreciate your indepth clarification to any mis-interpretation I may have given.
Thanks again for your insight.
No, no, I didn't think that you were downing coumadin at all. I agree, the need to take coumadin is definitely is a drawback of the mech valve. I was just trying to make the point that taking coumadin isn't the end of the world, either. That's all.
You have a hard decision in front of you, and I was just offering information on what it is actually like to take coumadin. That is merely one small aspect of what you have to consider in choosing a valve for your son, but it was something that I thought I could contribute.
You do hear a lot of silly things about coumadin, like the "artificial hemophiliac" comment, and the belief that "you can't be active" while on coumadin, neither of which is true. Some people decide against a mechanical valve purely because they think being on coumadin is a lot worse than it is. If you decide against the mech valve, I wouldn't want it to be because you thought your son couldn't have a happy life on coumadin or that he couldn't hunt, fish, or hike anymore.
There is no need for you to apologise. Maybe I gave you the wrong impression that I was offended by the way I went on at length, but I didn't mean to do that. Just think about your son, not about me. I will support you any way I can.
Thanks for all your support and comments. Y'all have helped in the decision making process. I will continue to monitor this post until July. I will also post the decision and our reasoning.
How was your son's surgery? Where did he have it and what size was the dilation?