Teen scheduled for AVR surgery

[sylviayasgur]

welcome, julie.
this is a great place, as you can see. although i don't know much about pediatric vr's there are so many members here who have that experience.
i do, however, agree that your son is old enough to have some input in this decision, as some others have mentioned here.
please keep us posted.
be well,
sylvia

 

[bethann]

My son, Nathan, is 11 and had AVR with a mechanical valve a year ago. He had endocarditis. Because of the degree of active infection and valve damage, he had emergency surgery. Ross was not an option given to us. We had the choice between a tissue valve and mechanical valve. It was a hard choice. Nathan is a very active, sports focused boy.

We opted for mechanical - they were able to put a small adult sized valve in so there is a chance this valve will last him well into adulthood. And for such a young child, our main objective was to minimize surgeries over his life. I truly hope this valve will last long enough so that he only faces one more surgery. Nathan was involved in the decision (really forced by his doctor, which shocked me at the time, but now I see the wisdom). Even though he knew he was giving up contact sports (his dream was to play for the NFL), he was determined to minimize surgery and really wanted the mechanical valve. I was amazed at his reaction.

Life with coumadin for an active boy.... This terrified me. I will say that a year out, it's not bad at all. The bleeding that I feared - every scraped knee gushing, etc. - has been hardly an issue at all. Yes, when he gets a cut or bang, he bruises a bit more easily, and it bleeds 10-20 seconds longer. Really it's no big deal. It's been fairly easy to manage his INR and keep it stable as well. He gave up baseball, but I think now that we're in a more informed place with coumadin - we'd let him play if he wanted to. He has found tennis and loves it and has more talent for this than other sports. So the irony is, he may have found a passion through the backdoor. All this is to say, yes he had to give up some activities - but he found new ones he loves even more. He's adjusted well, and we are all very relaxed. My theory is that he may hit his head at some point or have an injury that really needs immediate attention, but this may happen tripping down stairs or something. So we don't restrict his activity too much - obviously he won't play football or other contact sports. But, he does everything in PE and at recess, and wrestles with his little brother to the point that I can't watch. I know we have teen years ahead of us, and he will have to manage his own coumadin through the 'nothing-can-happen-to-me' years. But it's not as scary having a year under our belt as I thought it would be.

The surgery itself was also not as bad as I had thought. He recovered quickly, and the sternum healed fast. The worst part for him were the chest drainage tubes which were hitting some nerves. Nothing like watching my adult relatives recover from OHS. One tip was that dramas were better than comedies - belly laughing should be avoided in the hospital!

Good luck in your decision and if you have any questions, just ask. I did not have time to connect with other patients or parents last year, and I think it would have helped speed our adjustment.

Bethann

 

[pikacat]

Having to count down the years throughout my 20's knowing that my valve was deteriorating and that I would need another surgery was torture. It was always in the back of my mind. Once I got my mechanical valve a huge weight was lifted off my shoulders. I felt like I was almost in a depression for 8 1/2 years waiting on another surgery. Don't get me wrong, I am a very positive, happy person and I didn't mope around the whole time. But I always knew it was coming.

i really sympathize with this post. this was the story of my life, and i never even had children. i felt like my drs, by not listening to me, just put me in a position of being in a constant countdown for nothing. since the time i woke up, i knew i was counting down to another surgery -- i just didn't know when. just "soonish, when that valve craps out!" all for nothing, really.

just a few months ago, while we were trying to figure out when i'd need surgery, my gp was like LOL i couldn't imagine being in the position of never knowing when my next OHS would be! i was like LOL yeah it's PRETTY HILARIOUS.

anyway xoxo gadoty1, i really empathized with what you wrote.

 

[Julie]

Thanks again for the responses. I'm reading and taking all of this in, each and every experience.

I especially appreciate the advice to seriously involve Walter in the decision making process. Our surgeon encouraged this. At first, I was not happy with his advice. I mean, Walter is 15, just barely, and his decision making abilities are seriously questionable at times. LOL But as he, my husband and I have discussed the options, the pros and the cons. I can see that this is something he has to be involved in. It's his body and his life.

Lyn, like you, I'm a bit of a control freak. It's hard stepping back and letting him in on the decision making process. But it has to be this way. It's only right.

Georgia, our surgeon was explaining to us that they have now modified the Ross procedure to include a Dacron sleeve placed around the pulmonary valve when it replaces the aortic valve. This helps tremendously with the leakage problem that plagues many Ross patients.

Malibu82, I asked our surgeon when he thought that the trans catheter tissue valve replacements would be available at ACH. He said within 5 years. They are already being performed at other medical facilities. Great strides are being made in heart health care all the time. It's very encouraging!