Ross/artificial valve

[JayTwo]

Hi, I'm the mother of a 15-year-old son who is getting valve replacement surgery on Dec 4 01. He has a bicuspid aortic valve they have been following since he was 48 hours old, but hasn't needed surgery before this point. We have been given the choice between a Ross procedure and an artificial valve and we are trying to sort out this big decision and gather some information. We met with the pediatric cardiologist, met with the surgeon, are considering getting a second opinion, and also are interested in what others think who may have had this same decision. Do you know of any teenagers that have faced this?

Comments??

 

[Perrster]

No Geezers Here!

No Geezers Here!

Dear JayTwo:

Although I cannot specifically answer your questions regarding having teenagers in need of VR, I want to say welcome to this site and that you will likely get helpful answers.

I truly can't imagine what life is like with a 15 yr. old with his condition??!! We personally have two wonderful teens (each with their own level of challenges, of course!) Our daughter survived an auto accident last summer at age 16. Although she broke her neck and has valve-like titanium plates holding two of her vertebraes together, she's doing quite well at the present.

Has you son been on the internet researching his own questions and answers about his condition? I'd let him look at our site. The more he learns the better off he will be in the end. His recovery will be swifter.

If there's anything we can do we will all try very hard to help. Tell your son this is not a site with a bunch of ol' bypass geezers. We have some very unique and quite young folks here and many with teenagers at home.

Vr.com member, Ben Smith is a Ross guy. He's young and an incredible weight lifter. Ask him about his experiences. Jessica is in her early 20's and has had a transplant!

Best regards.

 

[Nancy]

Hi JayTwo

Hi JayTwo

Welcome to the site. It's the greatest place to get valve replacement info., friendship from kindred spirits and just old fashioned hand holding during the difficult time prior to this surgery.

I urge you to come to the site often, either you or your son. There are all sorts of people here. Some older and some younger. Some who have been couch potatoes all their lives and some who are into sports and bodybuilding.

All are survivors and true heroes. It's very inspirational to read the daily posts.

We'll all try our very best to give answers to any questions you have and we'll be honest and timely with the answers.

In my case, I am not the patient, my husband is. He had rheumatic fever as a teenager. It damaged his heart. He has two valve replacements (aortic and mitral), both mechanical and just had a repair on his mitral valve. He also has a pacemaker and has had two lung surgeries. His first valve replacement was in 1977 and that valve is still in there chugging along.

Good luck and we look forward to seeing your posts.

 

[sylviayasgur]

welcome!

welcome!

hi jay two!
so glad to have you here. this is an amazing place. it has helped me through my husband's ross procedure and has given me so much support, compassion and information. everyone here is a godsend! please ask us anything you want, we are happy to help in any way we can.
where do you live?
my husband joey is one of several rp's (ross procedures) here . some others are ben smith, mara, and lancashirelad. i thin we all opted for this procedure because it is supposed to last atleast 20-25 yrs and because coumadin is not required. i know it is done mostly on young people (i know joey's surgeon does it primarily on people aged 18 to 55). he has done some outside that range though. it is usually done on young people because the valves have been known to grow with the child. i 'm not sure, but would a mechanical need to be replaced when the child is fully grown? your son is pretty much full grown though, right?
in any case, there is a fabulous thread started by peter easton in either small talk or heart talk entitled "making the choice" that tells about different valve alternatives. also, you can log onto the website:www.myrossprocedure.com for more info about the rp.
good luck and please let us know how we can help.
please keep us posted. be well,
sylvia

 

[JayTwo]

Thanks for the comments

Thanks for the comments

Wow, we were excited to see the comments in response to our JayTwo posting last night. My husband and I and our son & some friends read through them and felt such support and encouragement! It greatly helped to alleviate anxiety we have felt about this decision and wanting to make the best decision for our son's future. This is a great website - thank you to Kevin M, Nancy, Sylvia, and Perry for your helpful input. Seeing the photos of some of you was wonderful. We plan to follow up on the resources that you suggested. We live near the Spokane, Washington area.

Besides the Ross procedure, the other option they have recommended is a St. Jude's artificial valve. The impression we have is that the St. Jude's valve, while it requires Coumadin, also will provide more long-term stability. At fifteen our son Jacob (sorry, not same as handle, we didn't really know what we were doing..) is probably 80% grown in terms of his heart. Because of this they feel there is a chance that he won't need it replaced on the basis of growth.

One interesting thing: we asked both the cardiologist and the surgeon what they would do if Jacob were their son, and they both answered (with all sorts of qualifiers and conditionals of course) that if it were their own son, they would go artificial valve. Reason: less likelihood of repeat future surgeries. They felt Jacob could still be reasonably active with the Coumadin - no football & no soccer but many other things he can do and have an active life. One concern we have about the Coumadin is that Jacob has difficulty remembering to take his pills...he is on enalapril and lanoxin to keep his BP and heart rate down. With Coumadin the stakes would be a lot higher it seems!

The Ross procedure is tempting because, from what we have been told, no Coumadin, and no activity limitations. However it sounds like there are more risks and definitely more likelihood of repeat surgery, as they have to consider how both the homograft and the new aortic valve are functioning.

So there is a little more detail on our situation - thanks for asking.
Before we go on about this much more, we should take some time to research the leads you gave us, which we appreciate very much. Also, thank you so much for the caring tone of your messages. It means a great deal!
Jacob's Mom


Perry-I was wondering how I can get connected to Ben Smith and if you have any other interesting contacts I get get connected too.
Thank you a whole ton Jacob

 

[Perrster]

That's Why We're Here

That's Why We're Here

Sylvia mentions ben smith, mara, and lancashirelad as other Ross Proceduree's.

You can connect with them by clicking the "members" button at the top of this page. Go through the list aphabetically to find them then either e-mail or start a new thread with a question directed to them.

I'm glad we're of some help. Sorry we can't help you remember your meds, Jacob. Heck, at a mature(?) 51 I still sometimes forget.

Take care.

 

[hensylee]

Hey Jay - welcome to our home and come on in and sit awhile and read. This is a site that will uphold you and your family, expecially your baby boy, from now til........ You will have our prayers all the way. Then you have to stay with us after surgery to relate experiences for those who come after you. God bless

 

[Tammy]

Welcome

Welcome

Hi Jay and Family -

You will certainly find a lot of useful information here and more importantly a lot of support.
Research is very helpful in making an informed decision.
I have had a mechanical valve for 12 plus years and it is what I would recommend with his age. It is a personal decision you will have to make as a family but there is really no wrong answer.
Feel free to ask as many questions as you want and you will have plenty. We have been there and we know from first hand experience.
At 15, he is young and strong and will bounce back quickly.

Take Care,

Tammy
MVR 04/06/89

 

[Kevin M]

When I had my first surgery, I was relatively young (23). Though I had been living on my own since 17, I still look back on the decision making process as quite difficult. Obviously, at my age, my parents provided more of a advisory role, than actually having a lot to do with the decision. The whole experience was a little traumatic. At 15, this has got to be pretty scary.

My question is What does Jacob think of all this?

This decision has a dramatic effect on his life in that the Ross will likely result in future re-op, but the mechanical valve could almost elmininate that risk, but will limit his lifestyle in terms of diet, activity and possibly affect what other drugs he can take for the rest of his life.

This is definitely a family decision. Either way there are sacrifices in quality of life, as well as risks.

It sounds as though you are facing this with a strong and healthy positive attitude. That is the most important part.

I think that pending other health issues, no matter which option you choose, Jacob will find he will be able to enjoy a very high quality of life - for me, that was the one thing I kept in mind through this difficult decision.

Even if you go with the Ross, they may get in and decide that a mechanical is a better way to go for reasons that may not be apparent until the operation is underway. That being said, it's a good idea to "make friends" with both alternatives.

One only needs to read posts from the vr.com members to see that we all share an excellent quality of life and most of us are happy with the choices we've made.

The fact that nowadays you have this choice is a testament to how far the technology and techniques have come.

Valve surgery is no longer a high risk life and death procedure. It can be, but for many of us it is a serious operation, but the overall mortality and risk of complications are low.

Kev

 

[sylviayasgur]

very well said, kevin. i coudn't have said it better.
how about consulting with different surgeons (or just one) , each a specialist in both valves or just one surgeon? i found that we met with 2 surgeons and the first one was the ross specialist in our area. he gave us a weatlh of info. pros, cons and even alternatives to the ross. we found him to be soooo helpful. he drew diagrams and spent about an hour and a half with us. we ended up using him for the sugery. it also gives you the feel for surgeons, etc.
this must be such a scary time for all of you. our hearts go out to you. please research, read, and use us on this forum. there are so many people here who have really been through a lot and have been so supportive.
we are here for you. please keep us posted. be well and good luck,
sylvia

 

[Rain]

Ross/artificial valve

JayTwo,

I really feel for you. Just four months after my own surgery, my then 17 year old son went for his annual sports physical. He didn?t pass..... they heard strange noises in his heart and wanted an echo. The echo revealed a dilated aorta. They wouldn?t release him to play sports and he was put on a daily medication (Beta blocker) for the first time in his life. That was a devastating blow to him.

The only thing I can think of that?s worse than being told YOU need heart surgery is being told your CHILD needs heart surgery. Hopefully my Ryan won?t be needing it for a while.. but I remember that horrible feeling when my cardio told us he would eventually.

My Ry did his senior paper on Marfan?s syndrome. He became very educated about his problem and somewhere along the way made the decision in his own mind that he wanted the Ross Procedure. My own problems with regulating my protime probably had something to do with his decision, but not entirely. He is still very active... he doesn?t do sports in college, but he still swims laps, does rock climbing, water skiing, etc. He?s as stubborn as his mother and I know he would continue to do these things even if he was on blood thinners..... so I tend to agree with him that the Ross Procedure is what we want. He also knows that MOST people do not have the problems I do with coumadin.

I would encourage your son to do some research on his own. I?m not sure seeing and knowing EXACTLY what goes on during the surgery is a great idea..... but if he?s anything like my Ryan.. they don?t stop with researching valves.... they wanna know EVERYTHING. I learned as much as I could about the operation ahead of time... and it scared me witless.... but if I had it to do over again.... I?d do the same thing. I like KNOWING.

I send my love and prayers to you and your son...... It?s a tough decision.

My son, Ryan is now 18 and a freshman at UNC... if your son would like to talk to him let me know and I?ll send you his email address. Mine is [email protected] I better not post his email address here.. I?d be in trouble for sure.

Rain

 

[maxximom]

Dear Jaytwo
Sorry to hear that your son needs surgery..I have a 8 year old grandson who was born with majoor congenital heart defects and has had 3 surgeries by the time he was 5 and is doing just fine. I have a question for you..does your son see a pediatric or an adult surgeon? Since he is technically still a child in the medical world..the opinions of the doctors may vary. I would certainly get more than one or even 2 opinions on what may be the most appropriate way to go for him. By the way..he probably wouldn't ever be a football player or play heavy "contact sports" no matter which valve he might eventually get. I know how hard this must be for you..I wish the two of you much good luck..and a quick recovery.
Rain..when I read that your son was at UNC..I assumed that you meant University of North Carolina..Chapel hill..If I am correct..I live in Raleigh..very near by..If he needs aa local place to crash or a friendly home cooked meal..please email me and I will be happy to invite him here. Please let me know!
Joan

 

[Turkey Hunter]

JayTwo, Welcome

JayTwo, Welcome

Again, Welcome to this wonderfull site of carring group of folks.

As my story says, I was diagnosed with 'conginital valvular aortic stenosi' at a very young age as was your son. I had mine followed until I was approximately 15 years old. (At this point I became a complete idiot and ignored my annual check-ups)

Approximately 11 years later...two children, and a great start to life later... I, by the grace of God, ended up back at a cardiologist office to have a check up when I was not having any abnormal feelings or symptoms that I was aware of.

Long story short, the decision you and your SO, along with your son are facing is the toughest by far part of the valve surgery process. I don't believe there is any right answer that anyone can tell you IS right. I am very sure that there is a right answer for your situation, but it is very individual and difficult to advise on.
I, on one hand was extreamly petrified of the coumadin use (smarter now and no longer scared) but also was not wild about the bovine options for other personal reasons. The Ross, which had not actually been offered as an original option, seemed to be the one option for me that I kept comming back to learn more and more about.

Not to sound religious, preaching, or otherwise... I felt as if God had directed me to an answer that was right for ME. As the story goes, there were way too many coincidences (sp?) for me to ignore what was being laid out in front of me as the correct choice.

I finally made my choice for that procedure very late in the game and have had extreamly good luck and great health since.
I am completely back to a normal lifestyle with the exception of not having the same physique I once did. But you know I learned that the physical appearance doesn't even come close to the importance of another chance. That was a big leason for me. My second chance is more aimed at time with family, friends, and success.

God Bless you and If I can help in any way please feel free to contact me.

[email protected]

Ben Smith

 

[Rain]

Pediatric cardiologist

Pediatric cardiologist

Jay Two,

When the guy doing the echo and then my PCP told me Ryan?s aorta was dilated I took him to my cardiologist. Long story... but I didn?t really trust the doctors here where I live at that point. My cardiologist immediately made an appointment for him to see a pediatric doctor with experience in heart disease, then the two of them decided to send the VCR tape of the echo to Denver to have it reviewed by specialists. (Ry was really trying to get them to clear him to play sports) Denver is an 8 hour drive from my house so that was really nice. You might consider doing that.

Joan, you are such a sweetheart! Thank you, thank you, thank you! It makes me feel so good to know you would make my son a ?friendly home cooked meal?. If it were possible I know he would love it... I?d have to warn you though.... this kid is 6'8" tall.. he?s thin...... but man, can eat a lot of food! lol

UNC is University of Northern Colorado, located in Greeley, CO. He?s an eight hour drive from home, but his big brother is a junior at CSU (Colorado State University) that?s in Fort Collins, so they are only about a 35 minute drive from each other. They both love rock climbing and camping and have mutual friends there, so they spend a few weekends together.

I can?t tell you how great it makes me feel that you offered though! What a wonderful lady.

Thank you again,
Rain

 

[JayTwo]

Making progress thanks to y'all!

Making progress thanks to y'all!

To Perry, Hensylee, Tammy, Kevin, Sylvia, Maxximom, Ben, and Rain, thank you for your help and your notes. We are printing them out and reading and re-reading them. We are continuing to look around at some other information and the documents you e-mailed us, Kevin, thanks. "Talking this over" with all of you energized me to get going on looking for a second opinion. Spent all day on it today, and ended up with a great solution, where we will be able to get a second opinion from another surgeon whom we respect, and we were able to cut through some red tape in the process. Felt great about that!

I especially appreciated the perspective I got here on this forum, the idea of "making friends" with both options, the idea that these are likely both good options with the potential for a good quality of life afterward...That changed my thinking. Jake and his Dad and I will still do our best to pick the soundest option but with more optimism and less dread. Jake has looked around this site, reading personal stories, checking out the chat room, and has been very interested in the notes. He has been pretty asymptomatic most of his life, but in the last few years he has tired easily and lacked energy. Right now its after one AM our time and he's in bed but he'll post a note here tomorrow about his thoughts on all this.

Like you Ben we are praying for God's help in this decision...and I've gotta say finding you all on this site is an answer to that prayer!

Jake's Mom

 

[JayTwo]

Thank you all for your words of comfort I sure do enjoy talking to you all and getting replies before noyone could relate to me they would try but her you know what I'm talking about and it is easy to converse thank you again for all that you have said and done. I want the Ross procedure but we do not know what is best for me. I would like it because then I could go rock climbing and itense hiking build killer luge courses with my friends where I wouldn't have to be so careful about hurting myself. On the other hand when we talked to the doctor he seemed to make it sound risky with lots of risks and potential things to go wrong and so I thought mabey we should go with St. Judes valve. My family and I are stuck in between please pray for us as we continue to make these descions. Thank you! God Bless! -Jacob


P.S. Ideas would be nice if you have any suggestions.

 

[Elsiedog]

Hi there, I had Ross procedure in March 2001, I am 33 but given the risks involved with taking blodd thinners I would go for the Ross every time over a mechanical. The other choice of a tissue vlave means committing to surgery every 10 years or so and that didnt sounds too appealing either. As a teenager I would have no hesitation in going for the Ross.

 

[RobThatsMe]

Hi Richard,

After reading your posting of concern regarding your own leaking valve,(only 8 months after your surgery), in another thread, it seems that there is risk in every choice of valve selection that we make. I guess that is why in the end, when making such a major decision, it comes down to what the individual feels most comfortable with in his own mind and justification.

Regards,

Rob

 

[sylviayasgur]

hi jacob!
so glad to finally meet you! just want to reitterate something....when my husband, joey, went in for his ross procedure, he needed a backup plan, just incase things weren't what the surgeon expected them to be when he got inside joey's chest.
this alone made us think about what else we would be comfortable with... i agree, there truly is no right or wrong choice. like most coumadin takers say, it's those who don't take coumadin who are the most leery of it. it's quite manageable to most takers.
about the ross, you would certainly want to go to a surgeon who has more than just a few under his belt. the dr who operated on joey is one of several well known to do primarily ross procedures.
this is how i explained it to my (much older) in-laws: think of it as a seamstress....one who's been doing it for years vs. a new very qualified young one. both are presented with a suit that needs to be taken down an entire size.... the young one may need to think about how she will rearrange the fablric and line it up , etc. for awhile before doing it. the seasoned one will look at it and from experience will think " a nip here, a tuck there, and voila!" when the surgeon is doing his/her job, you want it to go as smoothly as possible, that is where the experience of doing many helps. it almost becomes rote for them.
the ross is more complicated, but in the right hands...also, i imagine you are young and fit.

on the other hand, there is always a risk involved. leaks, infections, etc. it can happen to anyone and any valve. so, think about it and discuss it with your parents/family. ask us all anything, we're here to help (as did others for those of us).

when does the surgeon predict you will need the surgery by? how soon?
please let us know what you decide.
be well and God bless you.
-sylvia

 

[Elsiedog]

Rob,

I totally agree that the choice has to be a personal one and after much thought. As you mention I have leakage on my valve again after 8 mths do you know of others that have had the Ross that have had similair problems?