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]

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]

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]

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]

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]

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]

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]

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 raingray@hotmail.com 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]

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.

bulsmith@aol.com

Ben Smith

[Rain]

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]

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?

[RobThatsMe]

Hi Richard,

I did not have the Ross Procedure, however there are several on the site that have had it, and I think they can provide you with more detail information concerned your question. I hope they can help you out on this one and provide you with the information that will set your course and provide some provide some peace of mind to you. I do not think that the pills you are taking will stop the leak, only minimize the effects and help prevent further damage. Maybe your doctor is trying to allow your body more time to heal before having to face another surgery.

Wishing you good health,

Rob

[Jean]

OK Somewhere in our midst is a young man who last spring or summer had valve surgery and chose a very new procedure where a homograft is "cleansed" or some such process leaving a basic framework for the persons own cells to fill in and eventually take over the whole form.

I am wondering how this is going and what the ramifications might be for a 15 year old. I know that bios are not lasting for young people, but wouldn't it possibly be a go for this new form?

Just thought I'd bring this up and maybe somebody with a better memory than mine might know who or what this was...seems to me it was a surgery in Texas.

Hopefully...Jean

[RobThatsMe]

Hi Jean,

If my memory is correct, I believe it was Steve in Florida that had that type of valve. Hope someone else on the site can verify.

Also, Richard... Click onto the "Personal Stories" when you first enter the site. There are 4 people there that are listed with the Ross Procedure. You could try writing to them for further information.

Regards,

Rob

[sylviayasgur]

jacob,
i don't think i mentioned there is a great thread on either "small" or "heart" talk entitled "making the choice. you might get some helpful info there. let us know what you decide, please.

richard,
other rp's on this site are mara, ben smith, my husband joey, lancashirelad, and i think one other whose story is in personal stories. joey just had his rp done 7 1/2 weeks ago. when they did his post op echo, they found that there was some slight leakage, but no more than a mechanical valve would have. they were very pleased and not concerned at all.
have they said what they suspect may have caused the leakage? is it the pulmonary in the aortic position or the homograft that's leaking?
i agree with robthat'sme, i don't think that the medication they gave you is for the leak. if i'm not mistaken, that can only be fixed through surgery. the meds probably keep your heart from working too hard and thereby enlarging.
how bad is the leakage? are you showing symptoms of tiredness, etc?
i hope you are ok. hopefully the other rp's will be more helpful than i was able to be.
please keep us up to date.
be well, sylvia

[Kevin M]

I think you are referring to the CryoLife synergraft valve where the patient repopulates the valve with their own cells.

From their website, CryoLife says:

"The technology incorporates the use of a porcine pulmonary heart valve that has been depopulated of its porcine cells, leaving a collagen matrix that has the potential to repopulate with the recipient's own cells, providing a bioengineered human heart valve with structure and biodynamics similar to the recipient's own heart valve. It is anticipated that the tissue-engineered valve will have the capability to grow with the maturing of a child, thus potentially avoiding a series of heart valve replacement procedures. "

Steve In Florida and Peter Easton were ruthless in their research exploring this alternative, so either of them would be a great resource to you.

There is always risk with any tissue valve in that it could burn out early in young people. Their rate of calcification is far higher than that of the elderly and that's part of the reason they don't like to put stented tissue valves in young patients. The stentless valves or the bovine are felt to be better. The homograft also calcifies rapidly with youth, as I can attest from my first procedure.

My surgeon says he thinks my shiny new stentless tissue valve will last 25 years. That sounds great, but the last guy said my homograft would last at least that long and it starting acting up after 10 years. Considering that was Donald Ross, I tend to be a bit cynical about any of their predictions.

There is always risk that new advancements will not perform as expected, but the upshot is that sometimes they do. Even if the CryoLife Synergraft valve does burn out quicker than hoped, you can take comfort in the fact that at the very least, it will last as long as a more typical tissue valve. Forgive me if it sounds like I'm selling here, I do not mean to be. I only mean that any new advancement, if proven safe, will at the very least meet the minimum expectations. I think the same about the new drug therapies that are on the horizon to replace coumadin. But everyone is different in their weighing of risks and how they wish to live their lives.

In my personal case, I still second guess whether or not I should've gone with a mechanical valve this last time around. I hope one day I'll be more comfortable with my decision to go stentless. I comfort myself in enjoying my current excellent state of health and try not to think about it too much.

It's a tough choice, but whichever you choose, you will not pick wrong because you will still enjoy your life and marvel at how they can do such magic on the human body.

I guess I'm a bit philosophical today.
Kev

[bruizer]

Hi,
I had the Ross Procedure performed in December, 2000 by a world class surgeon who is recognized as one of the top surgeon's in the world and had performed over 150 Ross Procedures. He was also the surgeon Arnold Schwartzeneggar selected for his surgery. I have always been a very athletic and active running 4 miles a day and never had any symptoms leading up to my surgery. At any rate, my new aortic valve began leaking 4 months after my surgery. One of the leaflets had prolasped. My surgeon said in his experience, leakage so soon after having the Ross Procedure was very low (only 3 times). He said that there was a chance he could repair it. I now have an echo every few months to make sure my left ventricle is not enlarging. I was advised to do this by another world renowned surgeon who performed the first successfull heart lung transplant. I feel great, run 3 miles a day easily, and have no symptoms. My ejection fraction is really good, around 65. I will have my next echo in a few weeks and make a decision when to have surgery based on the results. I never expected to be facing a "redo" this soon after my first surgery. Given the information I had, I feel like I made the right decision going with the Ross Procedure (it was even recommended by my surgeon). There are many people (i.e. Mara) who have had this procedure and are doing very well. Unfortunately, regardless of what valve you select, there are no guarantees. I have had heard a few surgeons who are not big on the Ross. They say moving a valve which was in a low stress position to a high stress position can cause the newly transplanted valve to fail. However, from what I have been able to determine thru research, the success rate is very high.
Good Luck and God Bless.

[sylviayasgur]

hi bruizer and kevin! (and jacob)
first of all, i'm sorry to hear of your leaky valve, bruizer. glad you are doing so well though. my husband, joey, was dr. stelzer's 304th ross! number 304!!! he's now 8 weeks post op and so far so good. had a treadmill test and did well, but he's still uncomfortable running.

mara not only had a rp, she has a cryolife synergraft in her pulmonary position!!! our surgeon (stelzer) said that his "buddy" (i forget his name) at the cleveland clinic who does even more rp's than he does is using this routinely and is totally sold on it (cryolife synergraft)! dr. stelzer is a bit more conservative and wanted to go with the tried and true valve.

did you guys know that the surgeon who did arnold schwarzenegger's rp spoke to dr. stelzer the day after arnold's surgery when his aortic valve started leaking and needed replacement?? i guess that's why they don't publicize the fact that he had a rp.

i agree with the notion that there is no right or wrong valve. somehow the valve you end up with becomes the right valve. problems can arise with any type of valve. i think it's what you are personally comfortable with.
think about it , ask questions, whatever it takes.... mull it over with the family......
it will all be right in the end.
God bless you all, sylvia

[Sam Scholz]

I too fast valve replacement at an early age, 16. Having suffered from Ruematic fever (twice) in my earlier youth, I was faced with having an aortic, and or mitral valve replacement. The option put upon me was for a procine valve. I had no other options, valve surgery was relatively new then, 1975. I had the surgery done, and was up and about playing soccer 30 days later. (Yeah I know kinda nuts.) the porcine valve lasted til I was 24. This valve got me through college, and college soccer, and all those other college activities, i.e. fun. The second valve was to be a mecanical, and I wanted no part of it. I had a teflon coated Aortic inserted and my mitral was deemed fine. My new surgeon said I was set for a long time, even though my previous surgeon was a real "hack" as he said it, I would be fine. That porcine valve lasted 18 years and went out with a bang, my surgeon who installed the previous valve was still doing surgeries and told me in that I would be getting a mechanical, aortice and mitral. I figured I'd had a good run, now time to settle down. Well they popped in a St. Judes about 2 years ago and it is clicking away fine. I don't play soccer any more, but I coach it. My surgeon said I was set for life. Maybe if I was a sheep if I told him. But I feel very good and am happy with my choices. But through all of this I always opted for the newer technique or experimental as with my second valve. You will be doing this again, so try some new the first time, you might do all right. I have asked my cardiologist, about that "fourth" time and he assures me it won't be a problem. Granted he will be retired by then. But good luck,

Sam

Aortic valve replacement, with a mitral ring. 2/2/2000

[Gail in Ca]

Hi,
I had a porcine valve done and it lasted 11 years.
I am glad that I had this option because at least I was coumadin free and able to do any sport and not worry about bruising and lasting problems.
Now I have mechanical and am taking coumadin.
It's okay, I had no other choice, and I am content at 47 not to ski again!
It's true that you must be ready for other valves than the one you might want. When the surgeon gets in there things may change. It's also so important to have a well qualified surgeon that exudes confidence. I saw the tape of my surgery and there is so much sewing involved. I didn't know that surgeons also could be taylors!!
Gail

[JayTwo]

To any who are interested, thought we should give a little progress update. We are continuing forward on a process of trying to pick a heart valve! Those of you who have warned us that this can be a little unnerving...you're right!! We thought we were narrowing in on St. Jude, now we seem to be narrowing in on Ross. We have talked to four or five doctors and surgeons with different opinions, as well as support people, looked around this site and others. We have been told that, while they'd like to know a few days in advance, we can tell them in the waiting room before going into surgery. Talk about leaving our options open until the last minute! I hope we don't do that :) All three of us are very involved in this. We feel that whatever we pick it will be a win over Jacob's present situation, with more energy and stamina. The surgery is scheduled for Tuesday December fourth, less than two weeks away. The notes we have received on this thread have HELPED us with this process!! Thanksgiving is tomorrow...thanks for giving us your input. We are also thankful to have several good options and the time to think them over, and the prospect of Jake feeling better soon. We will let you know how this goes once we pin it down....assuming we will...we have to eventually! :)
Have a great Thanksgiving, all!
Tom and Tracy, Jacob's parents

[sylviayasgur]

hi tom, tracy and jacob!
happy thanksgiving! i'm glad you've consulted with several surgeons. i think that makes the choice easier and harder. my husband, joey and i felt that the more info we had the better. BUT... it also makes it harder to have all those choices.
glad to hear a date is set. now the wait... that's the worst part, but i suspect you'll fill that time trying to come to a decision about a valve. please remember, you cannot make the wrong choice. all choices are lifesaving and are the right choices. from what i've read, even those who end up with the valves they had originally not wanted, end up comfortable with the valve they were given.
have a happy and healthy holiday and we are here for you, anytime.
be well and God bless,
sylvia

[Mara]

Wow! you guys put a lot of info in here while I have been out there in the netherworlds. Thanks for the "plugs" Sylvia.

Jay2: Jake, mom and dad-
I have to agree with a lot of what has been said here already. The RP was the way to go for me. I think in young people it is especially good because of the longer period between possible reoperations.

I do have the CyroValve SG as my new pulmonic valve and it works great. I have had no troubles. A bit of tachycardia after I came off the Toprol a few weeks back, but that was expected. Other than that, I feel great. I am walking several miles a week, cycling, not sleeping all afternoon, and looking to join a women's over-25's indoor soccer league! Ha! When I was 15 the doc would have said "No way!"

The RP, as you know, is technically demanding. So get a surgeon who knows his stuff. Now, I can't say that you need to have a guy who's done 300 RP's, my guy had done 55 when he did mine. But, all 56 RP's had great outcomes! So, there is something to say about the technology that is out there now.
Nevertheless, you what a competent and skilled surgeon. My guy had done over 400 AVR's.

You already know that this is the hardest part. The surgery is a sinch because you sleep through that, the recovery is sore, but by 4 weeks you are feeling very well.

Good Luck!
and welcome
-Mara

[JayTwo]

After hours on line and hours talking to various doctors and lots and lots of discussion amongst Jacob and his Dad and his Mom about the pros and cons and factors and ups and downs and ins and outs, Jacob decided today, three days out from surgery, that he wants to get the Ross procedure. All three of us are settled about that decision. He and his Dad called the doctor's office and told the receptionist the decision. He said, "this is Jacob, I'd like a Ross procedure, and can I get a lube and oil with that valve job?"

If anyone can help advise us on a detail here....everyone keeps talking about how you need a pillow to hold onto for when you cough. This may seem like a silly question but....what kind of pillow is good? Just a regular bed pillow? A body pillow? A couch pillow? An extra-firm one? Or does it not matter? I may want to go out and buy one ahead of time so we're ready for when we bring him home.

Any advice from the experts?

[Christina]

Hi JayTwo,

They will have special pillows at the hospital, so don't go out and buy one. I received several "heart" pillows to hang on to when I had to cough or when one of those evil sneezes would occur, so watch out for those. They hurt when they catch you by surprise. The pillow really helps, so hang on tight.

Christina

[tnboomer1013]

I am responding to you Jake because in the end it is you that has to live with the decision. I have read your last post that you have made that decision. I can only tell you what happened to me. As I stated in my bio I was born with aortic valve disease. I was very active played baseball from the age of 5 till 35. Surfed hiked all the things that a child growing up in Ca. would do. At the age of 44 I had a very intense pain on the left side of my chest that literally put me on the ground. Well I saw a cardio as soon as I could. Found out that my valve was finally caput along with not having a artery on the left side of my heart. I needed surgery or else. I opted for the ross because of what I do. I do heavy industrial construction that requires extensive travel sometimes out of the country. I choose the ross because of my job and I really didn't want to quit being active. But because of what they found after they opened me up I now have an eternal ticking in my chest and the coumidin I take every night. I know I made the right decision on the ross but I also know I made another right decision by having a backup plan.
So stick with the ross but please have a backup plan just in case. You really don't want your surgeon stopping in the middle of the procedure if for some reason he can't do the ross and asking what do you want to do now. With the ross you have a chance of failure down the road, but you don't have the worry that goes along with the blood thinner. I am on the thinner, I hate the biweekly visits to the lab, but I refuse to let it change my life style. Another thing about the ross be sure you research you surgeon. Because there is a learning curve with this procedure. You want one that has done a number of these.
Good luck to you Jake. I know that you will do fine. Our thoughts and prayers will be with you and your family.


P.S. Stay away from the green jell-o.

GO UT. :p

[Mara]

Hi Jake-
I did not get a pillow from the hospital. I used on of those "pet pillows" It looks like a rabbit. You have seen them they are good for kids to hug and lie on the floor with. How ever, since you are a guy you might not want to carry around an animal pilow. It worked well because it was easy to hug, and just the right firmness.
You will also need lots of pillows to sleep with when you get home. This is when a body pillow would be nice. I sort of made a "pillow nest." It is hard to get comfortable the first 2 weeks post-op. You back willbe sore from trying to sleep sitting up. If you have a recliner at home sleep in that!

Beware the dreaded sneeze! you will hate it! Also coughing is rough.

Get some popsicles, those are good for when you feel yuky and don't want to eat. Jake, now is your big chance to be waited on hand and foot, so go for it! You will do great!

The weirdest part is when they pull your pacemaker wires and the subclavian lines. Feels very strange.


Good Luck.
Mara

[JayTwo]

Hi boomer thanks for the advice thank you all for the advice and ideas they have been helpful I go in tuesday. Thanks Mara and Christiana for writing and Kevin and sylvia and robthatsme and Jean and rain and everybody who ever wrote.

[hensylee]

Dear Jake - well here you are on the threshhold of the mountain - we are walking along with you, holding your hand til you get right on over the top and join us. My prayers and many many more are with you. Your mom will be here as quickly as she can after the surgery as we will anxiously wait to hear. Hug that pillow, little one - it will be your extra arm for awhile so take it everywhere - even to the bathroom. Get your buddies to sign it. It will be so much easier once you get through the surgery. Actually you have probably been through the worst part - the waiting can be excruciating. You will soon be on your way back to good health. Godspeed

[sylviayasgur]

hi jacob, tom and tracy!
so glad you've made your choice of valve/procedure. didn't that give you a sense of relief (once that decision was made)?
your big day is around the corner.... as others have advised, just have a back up plan, incase of anything. you might want to ask your surgeon what he recommends.
my husband joey never got a pillow from the hospital, so we took a "camping" pillow (small and pretty sturdy) along with us. any pillow will do though. holding it against your chest when you cough will ease the pain, jacob.
we will all be waiting to hear how it went, so, tom and/or tracy, if you or any other kids have a second, please let us know.
we will be thinking of you on dec.4th and praying for you. it will be behind you before you know it and you will be on your way to recovery.
God bless you all,
sylvia

[Elsiedog]

Jacob,

I had the Ross in March and I would agree with all when they say you should have a back up plan just in case, my surgeon told me beforehand there are a very few occasions when the make up of the heart just doesnt allow the procedure to take place.

The sneezes are bad but a small price to pay for what they are doing fo you.

Best of luck, you will be through it and revovering before you know it and wondering what all the fuss was about!

Hope to hear how you get on.

[maxximom]

Just want to wish the whole family my good wishes for a quick and uneventful recovery. I am at the other end of the age group from you at age 70..I bounced back quickly..so at your age..things should go even faster. If they don't give you a pillow at the hospital..get one that is nice and firm..NOT a nice sift squishy down one. The idea of a nest of pillows when you get home is a real good idea..I still like my nest of about 5 soft down pillows..and I was able to sleep in my own bed(pretty much in a sitting position) almost as soon as I got home. Many people made the suggestion of using a recliner chair..so I did buy one and it was a wonderful help!! I did usue it for the first few days..but with all the puillows I stole from all the other beds I was happy in my own bed in my nest!!
Please keep in touch and let us all know the "good news"
Joan

[bruizer]

Hi Jake,

I had the Ross Procedure Dec. 27, 2000. I feel you made the right decision with regard to your valve selection. As far as the pillow, I did not receive a pillow from the hospital. I found that the firmer the pillow, the better. I carried one around everywhere I went. The sneezes are the worst, so I tried to avoid sneezing whenever possible by blowing my nose when I felt a sneeze coming on. Fortunately, I can only remember sneezing twice in the first month. The hardest part is over (making the decision). The surgery and recovery were not bad at all. You will be suprised at how tolerable the pain is. I remember sitting in my bed a day after the surgery thinking this wasn't bad all.

God Bless.

[RobThatsMe]

Hi Jake,

Seems you already have received lots of notes on the pillow issue. I received a stuffed bear pillow and used that often. Coughing and sneezing can be painful until your incision heals. Putting some external pressure on the area sure helps reduce or eliminate the pain from coughing.

Also, don't try and be a hero. If you feel pain, tell them, and get some medicine. It is already proven that feeling painless helps the healing process, so, ask for a pain killer if you need it, and if what they give you isn't doing the trick, tell them and have them get something stronger.

Walking will help you get going after surgery. When they tell you to try and getup and sit, give it a try, and as soon as they tell you to try walking, go for it. You will feel much better by doing it.

I used some very light dumbells 2.5 lbs when I got home just to do some light shoulder and chest stretching exercises. I stress light! I wasn't weight lifting, only letting the body stretch some, and help the area that was healing to do so properly. You may want to ask your doctor about that.



Wishing you a successful surgery and speedy recovery!

Rob

[Perrster]

Jacob,

I guess today is your day if I've read all the posts correctly. Hang tough buddy, and we'll be here when you return. Take your time recovering and try to initiate a little more physical activity each day like walking, small weights, etc.

Does you dad have a LazyBoy? My son moved mine up to my bedroom after I got home and I still "live" in it! It's got a heater for the back and a massager, but it's noisy.

God bless and I'll be saying some prayers for you today.

PerryA

[Robin Eckmann]

I am Jacob's aunt and I live just a few blocks away so he, his brothers, and his parents are our second family. I've been reading this thread since Jake got started in it and, with Jake in surgery today, I just could not help but post a note thanking everyone for the care and concern expressed to Jake and to the whole family. It has meant so much to him, to his parents, and to his extended family including me. I feel like I have gotten to know you all!

We are holding Jacob in prayer today, and it means so much to know that so many others are too. Thank you again!

[Nancy]

Best of luck with your surgery Jacob. We'll all be waiting to hear how things went. I hope someone posts for you.

[hensylee]

Dear Jacob's Aunt - we are waiting to hear about him. Please let us know how he is as soon as you can. I am sure his mom will, too. All of us are always anxious to know all is well. Thanks for coming in. God bless

[Mara]

Jake and family!

Here's hoping all went as planned.

Let us know how you are.

-Mara

[JayTwo]

Hello to all our friends at vr.com. Jake is out of surgery and I am writing to you from his room in pediatric intensive care. The Ross procedure went well. It took about six hours. The surgeon says there is just a whiff of a leak thru the aortic valve but that is not unusual. We are so glad to have him through surgery, and awake enough to be communicating! He is in a fair amount of pain with the chest incision and he keeps asking for a drink which he can't have yet. But he went into the surgery excited and looking forward to being able to have normal activity and through the haze he still seems to be tuned in to the positive side of things. He thanked his nurse for all she's doing for him, and recently he said, "Hi. I just wanted to say that. Wanted you to know I'm alive." I guess I can sum that up as Jake's message to you all tonight! The surgical nurses said he was a real hoot - kept them all laughing until he went under. We are so grateful to God for helping the doctors and getting Jake through this. We are grateful for the incredible medical technology that has enabled this lifesaving surgery! When we prayed with him this morning before he got wheeled away, I put my hand on his chest and felt the rhythmic vibration of that murmur...so strong it almost felt like a vibrating cell phone...and all of a sudden in spite of my tension and anxieties it hit me that the upcoming surgery was NOT "the problem". His condition was the problem, and this surgery is the solution! Thank you for all the notes the last several days and today. It has meant so much to us.

[RobThatsMe]

Hi Jake,

So glad to hear that your surgery went well! Congradulations!!

May you have a full and speedy recovery and keep us posted when you can.

Your surgery update brought a smile to my face this morning.

Wishing you the best,

Rob

[Perrster]

Excellent news!

Sounds like Jake will be outa there in no time.

His humor will help him through many new challenges. Keep it up-it's goood medicine.

Cheers!

[sylviayasgur]

hi tom, tracy and jacob!
so glad the surgery went well. please send our well wishes to jacob.
the worst is over and from here on in it gets easier with every new day.
please tell jacob to relax and be patient, it all falls into place. as everyone here has said, walk, walk, and walk some more.
wehn jacob gets ready to eat and may not be hungry, mara's suggestion to us_ ice pops_ was a lifesaver.
i'm glad you all came through this well. God bless you,
sylvia

[Nancy]

Congratulations, Jake!

Nice to hear that you're in healing mode now. You'll be feeling better soon.

[Jan]

Hi Jake,
As i read our mom's post,I wiped a little tear from my eye, I could visulise your mom happily telling us you were through surgery, the happiness and relief she is feeling shone through.

I wish you a speedy recovery and send you love and positive thoughts

we all await your return so you can share your experiences with those of us who are waiting for surgery

Love and Sunshine to you all
Jan ( Liverpool England )

[Peachy]

Hi Jake and family

It's great to hear everything went well for you. Keep us posted with your progress.

All the best

Peachy

[Rain]

Jake,

This is fantastic! I've been away for a while... I come back and you've already had the surgery!

The chest pain is a real drag for sure. Just keep your little heart pillow close and watch out for the 'evil sneeze'. It'll feel much better soon. :) I'm so happy to hear the surgery is behind you and that it went well.

Congratulations,
Rain

[Elsiedog]

Jake,

Great news, best of luck for your recovery.

Richard

[JayTwo]

Hi everyone, I keep hoping to get Jake to write to y'all but between all his activities (blowing in his tube, coughing, shorts walks, etc, etc, as you know..) he is sleeping a lot. He is coming along great, moving in a few minutes to regular pediatrics, and may be going home tomorrow. That first night after surgery, when he was struggling with nausea, he roused himself out of a morphine haze for a second and asked, "Mom, what's oxycontin? Then he spelled it for me.."O-X-Y.." I wondered where this came from. The next day it connected...he was lying there thinking about Mara's story under the Personal Stories section of vr.com! The part where she had the allergic reaction to oxycontin.: Also Kev's comments about the hard parts, and all the stuff about coughing, etc. Thanks for all the support, I really can tell it has helped Jake to anticipate what would happen and to go into it with some forewarning. That's half the better. We appreciate you.

[Perrster]

What an amazing dude, Jake is!

Thank God he is doing so well as is his family of such supportive people. Nice to hear that he is going home soon.

I will look forward to Jake's first post-op posting. It should be a good one!

Take care and thanks for updating us.

[maxximom]

Hey Jake:)
What a Guy!!..sounds like you're really doing very well!! Believe me it only goes uphill from where you are now!!! I'm so glad that the surgery is behind you and only good things are ahead of you. I have a 8 year old grandson who had 3 heart surgeries by the time he was 5..and believe me other than his "train tracks" as he calls his scars..you'd never know it..I really admire you tough kids!!Heal quickly!!
Joan

[Kevin M]

I'm glad all went well, Jake.
Now that you're a couple of days post-op, you are going to start feeling a lot better.

Make sure to take the pain meds so you don't subconsciously take shallow breathes.

Keep up your deep breathing and don't get lazy with the walks. Those two things are going to make your recovery speed right along.

Now all the chicks are going to go wild when they see your scar. Chicks dig scars, man. At least that 's what I always tell myself!

Keep well and keep positive.
Kev

[Robin Eckmann]

My husband and I (aunt and uncle) just got home from visiting Jake in the hospital -- we took his three brothers and a friend along so they could see him, too. Jake is looking a little pale but otherwise very much himself and he is displaying his scar with pride. He was moved out of ICU today and he is walking and eating -- I was astonished at how good he looked when 48 hours ago he was in surgery.

Jake requested that his surgeon video tape the procedure and so we all watched that together -- that was REALLY SOMETHING! There was discussion about showing the video to Jake's biology class when he returned to school -- Jake was concerned about his classmates being grossed out but his older brother assured him that, quite to the contrary, Jake would be "the man" after it was shown.

Jake's mom will probably keep you all posted as well but the visit was such an incredible event I just had to share it.

[JayTwo]

hello everybody, this is jake. thank you for your posts and your encouragement,everything you said before and after the surgery. It helped. I started taking wallks every day, big long ones. the lungs feel like they're gonna cave in but i still do the breathing ten times every two hours. my back and chest is pretty sore. thanks again
jake

[JayTwo]

Hi everybody, this is Tracy, Jake's mom. I thought it might be good to start a new thread in post op.
Feels like we're graduating or something.
Can any of you give us advice on what to do with this pre surgery thread? Is it appropriate to leave it as is, close it?
Comments??

Don't mean to get too micro about the post surgery reports, but the latest is, Jake's discharge is being put off since there is a little fluid in the lungs ang also around the heart. STill looking at a possible discharge tomorrow. He is doing really well on the tube breathing and coughing hasn't been too bad. However nausea and appetite are problems, as is energy to take those much needed walks. I have put the laptop on his bedside table and as he is reading your encouragements he starts breathing more deeply..that' s how much help y'all are! He has been asked now to take eight walks a day instead of four which he's none too thrilled about but he knows its important. He's napping a lot.

He will get a diuretic for the lungs and an antiinflammatory for the heart, they will do another xray, echo and doppler tomorrow, and we'll see how things size up. The echo today showed the new valves are doing great.
Anyway, I guess I"ll start posting on the new thread so that's where you'll find us
God bless you
Tracy Jake's mom

[Nancy]

Hi Tracy-

Sounds as if Jake is doing very, very well. Those little glitches, extra fluid and such are things that many have had and they will go away in time, perhaps with the help of some meds to take care of it. Don't worry too much, just keep on, keeping on. Let the doctors sweat the bullets, Jake, you just hang in there. Your body has gone through a lot and it needs time to heal.

Good luck.:) :) :)