Teresa, My daughter had openheart surgery at 18mos. She had an atrial ventricular septal defect repaired and replacement of her mitral valve. She did very well. At 9 years she had to have her prosthetic valve replaced because she outgrew her first valve. They were able to put in an adult size valve and we were told that unless there are problems this valve could last for life. She continues to do well. She is now 16 years old. I was told that when she first had surgery,at that time, there were not many success stories. Well we are very happy to be a member of the success stories. Technology changes quickly! Hope your child continues to do well.
Its been about 12 months since I had my Mitral valve replaced by a St Judes. Brought on by Endocarditis. I'm on Warfarin but check my own INR with a finger ***** portable system. I didnt fancy the idea of having a needle shoved in my arm once a week or month for the rest of my life. Its also useful to take on overseas trips. Veins harden after a while. I have noticed Alcohol affects my INR so moderation is a factor here.
I would be interested to hear about other experiences of endocarditis and what their causes were.
Cheers, Mike (***@****)
Had an aortic valve repplacement with St. Jude (Mechanical Valve) 9+ years ago. Noise is only a problem if one lets it be. About the same as a watch ticking. NO BIG DEAL!
Wafrin and Coumadin are same family, but not always same, i.e. Coumadin and generic wafrin not accepted as same by some cardiologists. Anyway, been on Coumadin since valve replacement. Yes, it requires monitoring, but again not a huge problem. Blood tests sometimes monthly, sometimes as often as weekly depeding upon what has changed. Have had other surgeries, broken arm, and CABG since valve replacement. Management of blood thinners done well and again not a big deal.
Get a great surgeon and cardiologist, go to major cnter that does lots of valve inplants and plan for a long and good life.
Jim
My son had surgery to replace his aortic valve 5 years ago. The only options we were given were mechanical or pig and the mechanical was highly suggested. My son is 19 and having alot of problems dealing with taking coumadin. What is the Ross procedure and why wasn't it given as a choice for my son. He is also experiencing hair loss and I feel that this is because of the coumadin.
Teresa,
I know how you feel. My daughter was born with a Truncus
Arteriosis and had her first open heart surgery at 2 months (that
was when they reconstructed her heart). Since then, she has had a total of 5 cariac caths, stents placed, and her 2nd open heart at 6 years old. She is now almost 11 and you would never know all the problems she has had just by looking at her. We know that she still has at least 2 more open hearts and numerus caths to go through; one of them being an aortic valve replacement due
to at this point moderate regurgitation. The main reason I am responing to your comment is that I am well aware of what it is like to raise a child that has chronic cardiac problems. In case you have not already heard about it, there is a place in Great Barrington, Ma.; called The Edward J Madden Memorial, Open Hearts Camp. The only price of admission is having open heart surgery. It is for children 7-13 years old. They go for 2 weeks during the summer and get to meet other kids like them so they know they are not so "different" than other kids. Kids come there from all over the US. If your interested, all I have is there phone # (413)528-2229 and ask for Ken. Good luck.
Hi Sean
My partner (30 years) has had double valve replacement (mitral and aortic) and had mechanical valves put in, because he didn't want to have the op again and his surgeon was going to put in a mechanical in the mitral position anyway. He is almost 4 weeks post-op and on Waffarin (same as Coumadin). Being on Waffarin can be taxing since you will need to have PI and INR counts done regularly (i.e. need to take blood samples) so that the dosage of Waffarin can be altered accordingly. He needs to have his PI between 35-40%. Yes, the valves are noisy but you do get used to them. In terms of lifestyle changes his cardiologist hasn't restricted his diet/alcohol intake but I guess alcohol should be taken in moderation. While mechanical valves often seem to be the choice in younger patients it is worthwhile to note that a lot of research is being done on valves, especially to improve the life of bioprothetic valves. Who knows in a few years time you may even be able to grow your own valve. Also not much data on life expectencies on homografts is available, but it does look very promising. All in all it appears that with valve replacement (provided their are no major complications) allows the heart muscle to be much stronger and while there are risks associated with re-operation it is usually quite successful. Whichever valve you decide to go with, make an informed decision not a hasty one.
Good luck and all the very best with surgery.
Regards
Vanessa (***@****)