mom

[mary21]

My son was born with a bicuspid aortic valve. He led a very very active lifestyle in sports and visited the cardiologist every 6 months. Seemed every 6 months was different, we went from the opinion of a TEE that showed "deformed but 3 cusps, so will do some repair in the future" to needing a Ross procedure to keep this active kid off Coumadin. In December we were referred for the Ross. During the preop there was mention of the possibility of many things including a mechanical, which surprised me as I thought we were there to prevent that. Sure enough he came out with a mechanical, the pulmonary could not be used because it too was bicuspid. Though thankful this is all over and he is here, we're very bitter - anyone else with a similar experience?

 

[Cooker]

Mary,

Sorry it did not work out the way you would have wanted it to but it did work out. Although this did not hppen to me I know that it does happen.
I know of one member that wanted a mech valve and a repair was done.....the valve is now leaking again.

There are no absolutes. At times I have second guessed my choice for mechanical but for no reason other than having to get tested. At 50 I am pretty sure I am not as actice as your son but there are many here that are. The active life style forum should give you much information and I hope comfort. Also, I wanted to take the path that would give me the best chance for not having a second or even third surgery.

Best Wishes,

Tom

 

[Turkey Hunter]

My son was born with a bicuspid aortic valve. He led a very very active lifestyle in sports and visited the cardiologist every 6 months. Seemed every 6 months was different, we went from the opinion of a TEE that showed "deformed but 3 cusps, so will do some repair in the future" to needing a Ross procedure to keep this active kid off Coumadin. In December we were referred for the Ross. During the preop there was mention of the possibility of many things including a mechanical, which surprised me as I thought we were there to prevent that. Sure enough he came out with a mechanical, the pulmonary could not be used because it too was bicuspid. Though thankful this is all over and he is here, we're very bitter - anyone else with a similar experience?

I would have hoped that the docs would have all told you to have a second and third choice just in case when they got inside his heart; that it wasn't what they thought. There are no absolutes; yet him having a mechanical does not end his active lifestyle. you can find many folks with mechanical valves that lead very active lifestyles.

The docs never know exactly what procedure will work until they are inside and looking at everything with the human eye.

Take care & God Bless,

ben

 

[mary21]

mom

I guess that is where my bitterness lies. There was no discussion with the doctors, and there was no choice to be made. We were sent by his pediatric cardiogists for a Ross, there was no mention at that time of anything else. A NP did the preop the day before, we checked into the hotel and had to be back to the hospital in the morning, never met the surgeon. It was during the preop consents that my poor son was signing that the possiblity of the mech came up, and I was floored, and of course my son didn't understand at all. It was difficult, especially since he is 21 and has to make his own medical decisions, mom can't do much about it anyway. He would not go to sleep until he saw the surgeon's face, so he did come up so we could at least see him before the surgery. He said he would do whatever he thought was necessary when he got in there. And never in all those years was any mention made of anything being wrong with the pulmonary valve, so that was a shock also. Looking back, like you say with a Ross another procedure would have been needed eventually, and I don't believe he would ever consent to another surgery. Three weeks later, he needed a tooth extracted and medical consent from his cardiologist, who called me to ask ME why my son required Coumadin, he didn't even know and of course felt terrible and asked me why he got a mechanical.

 

[Karlynn]

Mary, the fault is your son's doctors not informing him that there would be a possibility for something other than a Ross needing to be done. Throwing it in at the last minute is inexcusible and I can imagine that you all are angry. Surgeons truly do not know what they a have to deal with until the patient is opened up and they get a good look at the anatomy.

That being said, unfortunately what's done is done and I know that you don't want to see bitterness and anger swaying how your son chooses to live the rest of his life. Now your son needs to educate himself about what life on Coumadin means - and that's the other unfortunate thing. Life on Coumadin is very good and he can be very active, but some in the medical community would lead him to believe that he needs to be treated with kid gloves. Since he's already been to the dentist, I'm hoping that the dentist didn't require him to stop his Coumadin for a simple tooth extraction. We have a saying here that doctors fear bleeding and we fear stroke, but that it's much easier to replace blood cells than brain cells. This is one of the "hints" in this thread that I encourage you and your son to read. http://valvereplacement.com/forums/showthread.php?t=17116

I would also encourage your son to join here. We have many people that he can relate to and learn from. We have, in my opinion, one of the world's best authorities on Coumadin in our member allodwick (his site is linked in the thread I recommended). We have some very active members on Coumadin. All he needs to do is read the Active Lifestyles forum to see all our athletes.

I have a 22 year-old son. If he had aortic valve problems, I would hope that a Ross procedure would be possible for him. If it wasn't, I would want him to have a mechanical. Tissue valves are "chewed up" pretty quickly in younger adults, with aortic valves, because they take the most pressure, getting the most abuse. Having lived on Coumadin for almost 15 years, I know that I would rather have him adjusting to that, rather than facing open heart surgery in possibly as little as 5 years. But that's my opinion. I'm just giving it in order to reassure you that while not getting the Ross was upsetting, I do think he has a good valve installed.

 

[Ross]

While I certainly understand your anger, try to look at the positive side of all of this. He most likely, though certainly not guaranteed, will not need another surgery for that valve. Being on Coumadin is not the end of the world as so many would have you believe. There is more misinfomation surrounding that drug, then true and honest information. You've found the right place to be. Many of us are mechanical/Coumadin people and we are a wild bunch. We had this surgery to save our lives and live that life, not to be restricted and put out to pasture as some of the medical community would have you think.

 

[PJmomrunner]

Informed consent is so important to the doctor-patient relationship. It protects both parties--one from lawsuits and the other from surprises. I certainly understand your disappointment. You'd be perfectly justified in expressing your feelings and asking to know what the surgeon knew and when. It sounds like you didn't get enough of the guy's attention pre-surgery.

That said, I think there are a lot of surgeons out there who relish the opportunity to do a Ross Procedure. It's a very technically demanding operation and experience is key to speed and success. A surgeon who plans a Ross and opts instead for a mechanical valve has very good reasons to do so and only his patient's best interest at heart. It's a shame you weren't fully informed in advance, but the lack of prior knowledge probably didn't change the outcome at all.

Oh, and welcome aboard. Thanks for sharing your/your son's story. This kind of info is very helpful to those of us who have yet to go where you've/he's been

 

[Georgia]

I went in for a mitral and tricuspid repair and came out with a mechanical mitral valve. I know this was never discussed; perhaps there was some information in the stuff I signed, but if there had been a discussion with the surgeon I'd have probably opted for a tissue valve, despite my age.

I did NOT feel bitter. I had a good relationship with the surgeon, and felt he did what he had to do. Also, I was in terrible shape by the time I had surgery, and knew I'd be dead without it. I'm happy with my valve and the coumadin is not the bugaboo I'd supposed (I hadn't found this site prior to surgery).

I probably would have had a stronger reaction had this happened to my kid, tho - I take such things to heart more when my children are involved than when I am. So I understand how you're feeling. I think your son will do well with a mechanical, tho; unless he's really into skydiving or other activities where he's likely to get a head injury, his life shouldn't be negatively impacted.

Good luck to him, and you, too.