I can't believe it!

[chilihead]

I am a 39 year ol male that is in excellent shape except for an aortic valve that is leaking severely. I was told a few years ago about the leak but it has quickly gotten worse. One cardiologist recommended waiting a year, while another told me I needed it fixed in a few months. I'm worried that I may have to get it done soon and need to have my valve choice decided on. I ride my bicycle hard and fast for several hundred miles a week. I travel to Europe and the Middle East frequently and am worried about the blood thinner restrictions. The Ross sounded good but the second cardiologist tried to talk me out of it. I'm still very active and worried that any day I will become short of breath and headed for the AVR. Can anyone recommend a cardilogist in the Dallas / Ft. Worth, Texas area that handles cardiac issues for atheletes?

I keep hearing of mechanical valves that may not require blood thinners. This would be the best deal for me, since I don't want to go through this ordeal again and have another child on the way in September.

Any help would be appreciated.

Regards,

Jim
james.a.johnson@lmco.com

[Ross]

Hi Jim and welcome to the forums.

Valve choice is something to consider, but I'll be honest with you on one thing, The Ross Procedure. I would take sides against it as they don't seem to last very long. Even shorter then a tissue valve, at least that's my experience. My first surgery was a life and death emergency and they did a Ross on me. It only lasted about 6 years and in the 7th, last year, I had to have the valve replaced. I went with mechanical because I certainly do not want to go through it a 3rd time. Surgeries and I do not get along with each other at all. At this time, I don't know of any mechanical valve that doesn't require anticoagulation. It could happen any day, but so far, I know of none.

Tissue valves may be alright, but for your level of activity, I'd be concerned about the pressures that they had to endure during activity. They may not last you as long as they should, which is 12 to 20 years normally.

The ideal for you I think, would be mechanical, but you really need to discuss all of this with your surgeon. Sometimes even then, we don't get what we want. The surgeon gets the final call on what will or won't work.

Coumadin is not a big deal at all. People make it sound so jittery and unwanted that I know why people hesitate at it. If you watch your diet and eat the same amounts of Vit K or close to it each day, follow with the testing to make sure your in range, there are no problems. To me, Coumadin is a non issue. Just a part of my everyday life now.

All of my troubles started when I was 33. Age doesn't matter when it comes to this stuff. I'm 41 now. You may not be able to ride as hard as you did before, but that's something you'll have to decide on when you get to that bridge. We have people here who run marathons and a wide variety of other things, so I think you get the idea.

Welcome again and if I can answer anything else, just let me know.

P.S. I'm going to resize your picture and repost it since most people are on dial up here and it takes them a while to download it. Hope that doesn't offend you.

Ross

[Christina]

Hi Jim,

Welcome to the forum and to our wonderful VR. com family.
Valve choice is very personal and there is no wrong choice, however some last longer than others. I was told the mechanical would last the rest of my life, but within 11 days, it needed to be replaced again. I developed a blood clot underneath the artificial valve. (If you have time read my story on the main page)
As Ross said in his post, sometimes what you want might not be what you get, and the surgeon always has the last word. When he gets in there, he can see if a valve is suited or not. It all depends what he finds in there.
It took me a good 18 months to get completely over the two AVR's, I believe.
As for Coumadin! Once it is regulated it isn't a big deal. You just have to make sure you get tested often, an not just every 4-6 weeks like some doctors do.
I do what I want and eat what I want, and regulate the INR around the Coumadin and not around what I eat. I do the INR testing myself with the Protime machine. I don't go to labs at all. The Protime is portable and you can take it with you on vacations and trips. I have several times since my surgery in 2000.
See the Protime icon on this page.

Wishing you all the best.

[Granbonny]

Welcome to our forum..Beautiful little child..and another one in Sept.:) :) I am age 63..Had my valve replaced almost 15 months ago. Doing great with a Mech. valve and taking coumadin. Hard for my age 10 year old grandson to keep up with Granbonny.:D :D Remember, any valve you choose will be a good one...but, open-heart surgery takes a long time to get back into the shape you were in before your surgery. It takes one day at a time. then 1 week..then 1 month and several months, ect...If your wife is going to have a baby in Sept...you need to go ahead and have your surgery soon..:) :) Then, you will be able to help with those late night feedings, ect.:D :D I am sure you will have LOTS of replies to your thread. Again, welcome and try to read all of the past posts..on each subject...Bonnie

[Nancy]

Hi Jim-

Two cute guys!

Welcome to this great site. We all understand the position you are in. It's a tough thing to have to face. But once the surgery is over with there is a big relief to have it behind you with nothing but recovery to think about. When you start to feel symptomatic, it can be stressful, because you can feel your body starting to fail. When surgery is over with, you can feel your body start to improve, and that's a good feeling.

The surgery will take a little time to heal from, so you won't be doing those long bike rides right away, but things will come back in time.

Choosing a valve is a difficult thing. There are pros and cons to all of them. Just know that Coumadin is no big deal. My husband has been on it for 25 years. It's just another pill he has to take. If you do decide to go with a mechanical, you might also want to look into a self-test unit, since you travel a lot.

The best thing you can do for yourself now is to read as much as you can on this site. There is a ton of information. It will be difficult at first, but the more you read, the less anxious you will be.

Ask all the questions you can think of. We're all chatter-boxes and will try to give you straight and honest answers.

Take care,

[hensylee]

Wow, what a cute fella - and the baby ain't bad, either. Hey Bonnie, here's another one for our calendar.

Welcome, Jim, to VR. You will be right at home here in no time atall. Wonderful members with wonderful information for you to help you through a difficult time. And much of it is information you cannot get from your doctor. God bless

[EVELYN]

Hi Jim

I'm Evelyn whose husband, Tyce, had AVR last June 26....wow, almost a year!!! He had a St. Jude's mechanical put in only because he didn't want to deal with any further surgeries.....believe me when I tell you Coumadin is NO ISSUE. We, too, have our own Protime machine, check regularly and adjust accordingly......not, and I repeat, NOT a big deal. Tyce does watch his green leafy and really loves to be high so he can have a huge salad and some asparagas, broccoli, etc., but that's about it.

Whatever valve you choose, this group will be here for you....please feel free to ask anything, the knowledge here is absolutely staggering---

Good luck both with your heart and also with your new baby on the way.

Evelyn

[ALCapshaw2]

Hello Jim,

Since you are an avid athlete, you will want to ask your Cardiologist and / or surgeon about the HEMODYNAMICS of each valve option.

Another downside to the Mechanical Valves is they tend to have smaller openings (worse hemodynamics) than tissue valves. This LIMITS your maximum available blood flow which of course limits your maximum exercise tolerance (before going into an anaerobic state).

You may want to look into Human (cadaver) valves or the Bovine Pericardial Valve (made from the pericardium of a Cow's heart) or a Stentless Porcine Valve. All of these have longer durability than Pig Valves but will still need replacement after 15 to 20 years.

ALL valves have their pluses and minuses. Often, the choice comes down to which set of undersired characteristics you can best live with. Look over the Valve Selection Forum and also the thread on "Making The Choice" in the Heart Talk Forum for a LOT of information on this topic.

Oh yes, you may also want to slow down until your surgery. As the valve deteriorates, the risk of SUDDEN DEATH increases.

If you develop Stenosis, the heart can compensate (for a while) by building up the muscle (wall thickness) and / or enlarging. The down side of this is that if it goes on too long, PERMANENT DAMAGE can occur to the Heart Muscle / wall. Once enlargement is detected (by an echogram or XRay), it is time to go directly to your selected surgeon!

Best Wishes in making your choice,

'AL'

[sylviayasgur]

hi jim!
what a beautiful baby!!!
why did your doc try and talk you out of the ross procedure? you are young, athletic;are there any coronary problems other than the valve?

i feel i need to take bits and pieces from what all the others said...

first of all, this is one of the most difficult decisions you will have to make. please be sure to research it well until you are satisfied with the knowledge you have collected.
any valve will do the job. the thing is, valve choice is a very personal thing.
in the end, they all save your life.
most of these procedures are tried and true.
still, as you may already have read, things go well with all the valves, but things may once in a while go wrong with any of these valves, whether it is a clot or leak or the valve failing prematurely.... unfortunately, there are no guarantees.

secondly, i agree with you slowing down on the biking a bit for now.
joey is a runner and biker and actually had to stop doing all that before his surgery when he was so symptomatic.
do you have any symptoms? shortness of breath?

next, joey is now actually doing MORE than he ever did presurgery. he is now able to lift weights, run at a very fast pace, inclines and all and really challenges himself! he loves it!! he works with a trainer (who, i think, pushes him too much, but his cardio says it's fine).

there are so many threads on valve choice here. "making the choice" is a good one to start with. i think it's in small talk or heart talk back in 2001 and it was started by peter easton. try doing a search on it.

welcome to this site and we hope you will let us know what happens with you.
ask any questions of us, we are glad to help.
be well, sylvia

[epstns]

Hi, Jim, and Welcome!

I see you've already met many of the family members here. Those who have already had their surgeries are a wealth of real-life information about what to expect and how to make the all-important decisions.

I'm happy to see that some time ago you already made an important decision about your health and conditioning. I'm still "waiting and watching" until I need VR, but my doctors agree that being healthy and in good physical condition will hasten your recovery when you have surgery.

I'm probably a couple of years away from surgery, so I have lots of time to go crazy over all the if's, and's and but's along with the real decisions I'll need to make. The friends and family here are the best support I've found to help keep sanity all through the process. Read, ask questions, and in general stick around. I'm sure it will help keep your mind at ease until you've got it all figured out (if THAT ever happens. . . ).

[chilihead]

Many thanks for all of your inputs. So far I am asymptomatic. I feel fine. Anxiety is creeping up on me, but other than that I'm going and blowing as usual. I plan on doing a 100k bike ride Saturday for charity and participating in a chili cookoff this weekend as well. I appreciate all of your responses and will continue to research the issue. I really want to get back in good shape within 4-5 months of the surgery. As of now, I plan on getting a mechanical valve around Christmas of this year. :)

[Ross]

As long as your in good shape, which you are, you should be fine.

Why around Christmas? That's a stressful time of year as it is.

Stick around and have fun. Read and learn and enjoy. :)

[chilihead]

The last cardiologist I saw wanted me to have it done in July but after taking another echo, decided I could wait and get it reevaluated in November. He stated that I would more than likely need to have it done at Christmas time. Personally, I would rather do it in the winter, when I'm not usually biking as much and going as many places.

[Ross]

If it's at all possible, you might want to try to wait until after New Years. I'd just hate to see you trying to recover or have surgery during the holidays. It'll make things easier on all concerned.

[chilihead]

Good point Ross. I'll probably go on a ski trip over the holidays and schedule it for after the first of the year. Plus, I'll get to eat all of the good holiday foods with no worries about INR numbers!

[Granbonny]

Hi again.. If you will notice..my avator, is that of a big fat mother-hen..I am the Granhen of the group..:p :p You be careful biking this weekend in that Texas heat..and don't mistake hotburn from that chilli you will be cooking this weekend ..to being ..having heart problems:p :p :p My age 33 year old son drove himself to the hospital for pains in chest he had been having..Thank goodness..just stress. from being a Policeman.:) :) :) Now, he stops by gym on the way home for a light workout. ( Wife was also preg. and having some minor problems) You need to get all the stress out of you..Did your cardiologist say it was o.k. to keep biking? We love all of newcomers here..so don't forget and post often. Bonnie

[rcatalano]

Jim,

I understand the shock. I had my first avr at age 31. I had run a couple of marathons, had no symptoms. I had a homograft put in. Now, 14 years later, I'm scheduled for another avr in August. The second one will be a mechanical, hopefully my last surgery.

After my first surgery, I got back into shapepretty quickly. I did a few tin man triathlons and many running races. However, I was never the same as far as speed. The best I could ever do was run about 1 minute per mile slower than my previous pace. (OK, I'm sure age had something to do with it). I think the issue was, my homograft was small. I was on a waiting list, so they gave me the first one available. Its 22mm, a small diameter, though I didn't know it at the time.

Good luck on your new child and with the surgery. I think scheduling it in the winter is a great idea. When spring comes, you'll be ready to start getting back into shape and you won't 'lose' a complete biking season.

Rob

[mike anthony]

Jim,

Since the doc's don't seem to be in a hurry I would wait until after the holidays. My second surgery was schedule for November 2002, but the doc decided to wait until after the holidays. I'm glad he did, I had my second surgery March 2003 and after 3.5 months I'm back to my normal routine, playing golf with a full swing, basketball couple times a week and traveling.
You are obviously in great shape and should have no problems with this surgery....good luck.

[Nancy]

Hi Jim-

If you have a choice, try to schedule your surgery well after the holiday season, or well before it.

We have found that around the holidays, the normal staff takes a lot of time off, and hospital schedules are quite different. You may find that there will be less continuity of care and that is less than desirable. There are lots of things that happen with the "hand-off" from one person to another. Stuff gets lost in the shuffle. Also if the hospital is short-staffed, the nursing staff will be overwhelmed and may not be able to give you their normal good care.

This surgery is difficult enought without worrying about the above things.

Think it through.:)

[ccrawford]

Hi Jim - You've gotten good advise from the group as usual. I just wanted to add a couple of points. First, you are near the Texas Heart Institute which is highly rated and does a bunch of valve work, so you might want to check that out. Second, pay pretty close attention to any emerging symptoms. For instance, if you find that your stamina seems to be going south, don't just assume you had a bad day on the bike. When my walking performance started to suffer, my cardio speeded up my six month checkup with a cath and two days later I was in surgery. Its fine to have a plan re timing of surgery, but sometimes plans change.Good luck to you. Chris

[dnksideways]

Good luck with any decision you make. I am a 32 year-old Ross Procedure patient who had surgery on 6/30/00. I'd have to say that as a relatively young athlete I can't imagine your dr. talking you out of the Ross. The first reason I had the Ross was the little guy in your picture. I though quality of life would be better with my kids if I didn't have to worry about the Coumadin. Second was my desire to keep playing basketball, football, etc. The link I have posted below is an article on recent 10-year results on the procedure. I think nearly 90% of patients not needing reoperation after 10 years is still pretty good. I don't know corresponding statistics for mechanical replacements.

Any reason to stay in the Dallas area for the surgery? I made the road trip from Birmingham, AL to Duke MC for mine as I thought my surgeon was the best at the procedure. The trip home wasn't fun but well worth it in hindsight.

keep us posted on your progress/decision.

ross procedure results (abstract) (http://jtcs.ctsnetjournals.org/cgi/content/abstract/115/5/1091?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=ross+procedure&searchid=1056401350151_1985&stored_search=&FIRSTINDEX=0&search_url=http%3A%2F%2Fats.ctsnetjournals.org%2Fc gi%2Fsearch)

[chilihead]

Thanks for the advice. My second cardiologist was Dr. John Warner from Duke. He's the one that advised against it. I think it is ok if you have the right surgeon. That being said, I'm afraid I don't trust many of these guys to do much more than a textbook operation. I've read enough that I think I could do my own mechanical valve replacement but the Ross is something more complicated. What is the estimate on the valve they used on your pulomonary side? How has your recovery been?

Best wishes and thanks again!

[dnksideways]

Certainly it is a more complicated surgery, but with the increased risk there is a commensurate reward in not having to worry about blood thinners or having to alter any of my athletic activities. My wife and I did extensive research into every surgeon in the US who had done more than 50 RP's. Of course I would heed the advice of your cardiologist over anything I could offer but I would definitely get several different opinions.

I don't know of an estimate on the cadaveric pulmonary. I pray that I happen to fall into the statistical group that doesn't need any surgery again.

My recovery thankfully went remarkable well. I was back at work after 3 weeks of being at home. I'll have to agree with a previous post (or maybe it was yours) about not being quite up to the athletic level I was at before the surgery. Probably something to do with getting older but I believe it was a little more than that. I can still hold my own, which is all I can ask for.

Here is a link to the site I used to find some of the surgeons I researched. Maybe you've been there already. myrossprocedure page (http://members.cox.net/myrossprocedure/)

[joy]

Hi Jim, and welcome! I have a tissue valve because I didn't want to end upon coumadin, but it came back and bit me in the behind. I've learned alot since this happened though. Coumadin is not that bad, really. I take 4MG at bedtime and get my blood tested every other week. No big deal. I bruise a little easier, but not much. I wish I would have gone mechanical, and next time I definately will! There is no right valve for every one. It is a very personal choice. I would suggest that you talk to your surgeon and cardiologist about it, and see what they suggest. Good luck! Everyone here is so great! By the way, I am 25 and had my surgery when I was 23. Good luck!

[ddarsch]

Jim:

I was 34 when I had a tissue valve (porcine) - November 1991. It has treated me well as it is now 2003 - 12 years later. I was very active and remain so - climbing the Andes mountains after surgery.

However, the valve has started to leak and within a year I will have to have another valve. I am almost certain that I will do another non-mechanical valve.

What ever choice that you make - it is the correct choice.

[chilihead]

Thanks again for everyone's comments. After talking with Dan Herrington, I was inspired to ckeck out the Ross a bit more. I'm also studing the hemodynamic performance of the different St Jude's valves. If I go mechanical I want the "high performance" model.

I'm trying to get in to see another cardiologist ASAP.

I just got back from a mountin biking trip to Arkansas where we pushed it to the limit as far as exhaustion. Luckily no one was injured and we all lived to tell about it!

[bruizer]

Hi Jim,

I had the Ross Procedure performed on Dec. 27, 2000 by the same surgeon who performed Arnold Schartzenegger's. I was in great shape, running 4 miles a day, lifting weights 3 times a week, and playing tennis a few times a week up until the day before my surgery. I had no symptoms. My recovery went extremely well. I was running 3 miles a day 3 months after the surgery. Unfortunately, one of the leaflets on my new aortic valve started to prolapse 4 months after the surgery. I have another surgery scheduled for July 18 to replace the aortic valve again although I still have no symptoms and able to run 3 miles a day.

In hindsight, I feel the Ross Procedure was too risky. I have also had several other surgeons and cardiologists say the same thing. If I were in your shoes, I would strongly consider a mechanical valvle. I just met with Denis Conky, who is a member of this forum, yesterday evening who had a homograft implanted in Dec. 2002 and is facing a "re-do" in the next month. Initially, we both were totally against mechanical valves and coumadin since we are both very active. However, taking the more conservative approach at this point seems to make more sense. My cardiologists and internist both say coumadin is no big deal. It is also encouraging to hear how Nancy's husband Joe has been on coumadin for the last 25 years.

Good luck with your decision.

[Tom]

Hi Jim,

I would suggest getting a few different opinions. Doctors that perform a lot of mechanical valves favor them, and those who place mostly tissue valves favor them. I had a cryopreserved homograft aortic valve placed in 1999 at Mayo. I wanted to avoid coumadin as I am very active athletically. There is a well know cardiac surgeon close to you, Dr. Ron Elkins at the University of Oklahoma. He probably does more Ross procedures that anyone else in the USA, and also performs a lot of homografts. Also, Cryolife has come out with a new homograft, the Synergraft, that is supposed to last longer than the regular homograft. The donor cells are removed, leaving the collagen matrix that is repopulated with the patient's own cells. The last I heard, it is only available at University of Oklahoma and Mayo Clinic in Rochester.

Best of luck!

[nefarious_muse]

Jim: It looks like you are doing a good job of researching, so I'm sure that no matter what you decide, you'll be fine.

My husband's doctor told us that Arnold Schwarzenegger's Ross procedure failed (started leaking three days post op) and that they had to open him up again, and use another valve (I think he opted for porcine).

Our doctor explained that sometimes the "fit" can become an issue with the Ross procedure...so it's not uncommon for doctors to get into the OR and take a look at what's going on with the vessels before making the decision to go forward with the Ross procedure.

I've never have been able to confirm this (even looked on the internet) but it's what we were told :(

My husband's case was an emergency, so unfortunately we didn't have a lot of time to research. It all worked out in the end, however, as he really doesn't seem to mind the mechanical - or the medications.

In any event, good luck to you -
Nef

[chilihead]

Bruizer,

Thanks for the advice. I think If I were 25 and single, I'd go for a Ross. However, at 39 with a 3 year old and another child on the way, I should probably go conservative and get the mechanical. I just hate the fact that there isn't a mechaical model that doesn't require coumadin.

Next question, which mechanical model are you considering? Check out the St Judes' Regent model. It looks to have the best hemodynamic flow.

Regards,

Jim Johnson
Needing AVR in the next 6 months
james.a.johnson@lmco.com

[tnboomer1013]

I had avr in july of 2001. Originally had opted for the ross because of my life style. Basketball, baseball, running, hiking and what I do for a living. I am a boilermaker if that means anything to you. Travel constantly all over the world. They couldn't do the ross because my aorta was enlarged and the pulm. valve wasn't going to fit. So it was on to plan B and a mech. for me. Always remember to have a plan B before surgery and discuss with the doc what the plan is. Because when they get in there and plan A isn't viable it is not a good time to wake you up to find out what you want to do. If you do go with the ross do your homework, there is learning curve for these procedures, find one that has at least 50 if not a 100 under his belt. We have a say in our treatment so choose not to be open heart surgery 101. I have a carbomedics and boy is it loud. I know people here are going to say that after a while you can't even tell it is there. But sometimes it sounds like a bass drum. I really didn't want the mech. because of the coumadin thing, but it like someone has already said it is what you can put up with after the fact that counts. For me it was resurgery, I am out on that. Once was enough. So I have an eternal clock ticking in my chest. The coumadin is a pain though. I know some here will say that it is really no big deal but when you do what I do for a living it can really be a headache. Being on the road virtually all the time when I'm working, finding a clinic can be a challange. Because When I do go overseas that is out. I am not going to let someone in a third world country stick me. So I have to really watch what I eat and keep on top of my meds. Then there is the risk of getting hurt. In my line of work it is a constant threat. Something I have to be aware of all day long. It is not the getting hurt part but what happens after. I might be working an hour or more from the nearest hospital. You can do alot of bleeding in an hour. I do bruise very easily now, which if nothing else looks bad.

All that said, There is an upside. I am alive. I get to see my 11 year grow up. Play with the grand kids (some day). And being 46 now I have only 8 and 1/2 more years to go til I can spend my days a little less hectic.

Which ever way you decide to go it is a personal choice one that you will make based on what is right for you and your family.

Good luck and don't be afraid to ask questions. Knowledge is power.

[bruizer]

Hi Jim,

I haven't really discussed with my surgeon what type of mechanical valve he would implant, since his recommendation is a homograft. I just assumed that there was basically one kind of St. Jude mechanical. I asked with my cardiologist (who I happened to play high school football with) if a mechanical valve would restrict my level of exercise tolerance. He said that the size of the valve would be the determining factor and that a smaller valve would have less hemodynamic flow. Since I am very active in sports, this is definitely a concern so I am going to do some research and make another appointment with my surgeon. However, I still would be leaning towards a mechanical. Although the first surgery went extremely well and I actually was back at work in 12 days, I do not want to have a third surgery some day.

I definitely will look into the regent model. Thanks for the advice. Please keep me posted if you find out any other information.

Thanks,
Bruce

[ALCapshaw2]

Hey BOOMER,

You didn't mention having a Home Test Instrument for INR.

I hope that you are aware they are available (Protime, Coaguchek, and others) and you can TAKE THEM with you on your travels. Check out the QA Services link or the Protime Home Test Forum.

'AL'

[tnboomer1013]

Already tried that. No dice. My insurance won't cover it and I can't afford one on my own. Let alone the supplies.

[Randall Beckwith]

I had a aortic valve replacement (along with the aorta) in January 2002. I opted out of a tissue valve because I only wanted to go through the surgery once (I was 46 at the time). I considered the St. Jude valve, but my heart surgeon said they had a higher infection rate in the first 5 years after surgery because they have two valve cover openings and have dimensional edges where bacteria can snatch onto and grow. He recommended a Medtronic valve, which I ultimately selected. It is a little loud sometimes, but I am more active now than I ever was before (fear is a great motivator). I have a rowing machine and a treadmill and do an hour workout 5 to 6 days a week — no problems. You might add it to your research list while you gather information for your decision. Good luck.

Randy

[chilihead]

Thanks. I'm still pondering the Ross procedure as well. I think the key is the surgeon and the condition of your Pulmonic valve that is used for the replacement. I'm also checking out how long the replacement valves for the pulmonary last.

Tough decision. I had lunch today with a coworker that had the St. Judes installed about three months ago. He seemed to be fine with it. I fell like the Ross is more of a gamble but might pay off in the long run. But, I'm not much of a gambler and generally lose especially in Vegas.

I appreciate all of the info from the folks on the forum.

Lately when I'm lying flat in bed, I feel a weird gurgling sensation. Once I get up and walk around it goes away. But, I'm still riding by bicycle a lot with no problem and just returned from a two week business trip to Germany. Fine beer!

Keep the posts coming. I'm off to ride my bike! It's a 100 degrees here in Texas.

[greggo32]

Dear Jim,

After reading the many intelligent responses that your thread generated, I will not offer any feedback about the surgery experience or valve choice. I do believe that you may want to ease up a bit until you have had your surgery and are well in the clear. I wish you the best and thought that I would offer the above comment as a concerned and future oriented person!!

Best of health to you and may your surgery go smoothly...

Truly,

[chilihead]

Greg,

Thanks for the advice. I was approached by my first cardiologist about possible repairing my aortice valve. I have heard that this generally doesn't last. I noticed you had experienced this and thought you might provide some insite.

We have another baby on the way in less than two weeks, so my options to slow down are limited. But, I hear what you're saying. I hope all is well with your new valve and that you are back to normal as much as possible. Any problems with the coumadin?

Take Care,

Jim

[Birky]

I have a St. Judes mitral valve which was put in on 2/27/03. Before the surgery, I was hoping for a repair and was told that there was a 90% chance that I could. After the surgeon got in there, they had to put in a mechanical. Coumadin really isn't an issue. I was on it for 7 years prior to the surgery and now again. I am 56 and very active.Work fulltime and love to have my grandkids around. Six of them. We have 3 six year olds and one 3 and 2 teenagers. I feel so good. Wish that this had been done sooner. Good luck to you,

[John S]

Marcia,

In July 1999 I had a mitral valve repair, and it didn't take. They went back in in November 1999 and replaced it. The first time the guy went through my sternum, but the next guy did a thoracotomy, and it was much easier to recover from. I used a different surgeon the second time around and I'm glad I did. The first surgeon has since been driven out of the business by malpractice. So anyway, maybe it's just as well your surgeon decided to go with the replacement.

We have one grandchild now, Max, 13 months old. He is so much fun and so cute! I can't imagine having six--must keep you busy.

[Birky]

Thanks for your reply. Yes the grandkids do keep me busy especially the 6 yr. old twin girls. Identicals and are full of pep. We were talking about this valve last night and I guess he made the right decision. I didn't want to have to take Coumadin, but I didn't want another surgery either. I can't tell you how many people have come over and told me "how much better I look" I know I didn't feel "right" at least a year before the surgery which I blamed on stress and age but didn't realize that it showed so much. My kids were getting really worried about me when I started avoiding doing things that I did before. They are happy that it is done and they have their regular Mom back. Have a lot more energy and coping abilities. Looking forward to going fishing, eating and relaxing in Wisconsin for a week. Love fishing. I have been going to the same area since I was 2. Gotta get back to work. Took a break to answer. Marcia

[John S]

Marcia,

I'll cheat a bit here at work and answer you back! Yes, people keep telling me how much better I look, and how much "color" I have now. Makes me wonder how awful did I look before?

I could never get anyone to go fishing with me. My big thing was camping, but now the kids are on their own and scattered.

Have fun in Wisconsin!

[Sherry]

Hi, Jim,
You've gotten lots of great insight already, but I'll add a bit more. I'm 39 and was 33 at the time of surgery. My cardio was going to repair the mitral valve, but after six hours of surgery, I was still leaking, so he put in the St. Jude's instead. I didn't have a choice, but now after six years with it, I see the coumadin therapy as a minor nuisance (most of the time). Sounds like you're doing all the necessary research, plus you're in great shape physically. Best of luck with your decision, and by the way, the little one is adorable :)

[chilihead]

Thanks Sherry,

Glad to hear you doing well. I'm trying to come to a decision in the next 4-6 weeks on valve choice. The cutie in the picture is my daughter, Sadie. She is now 3 1/2 and has quite a bit more hair. We have another one due in a few weeks. I want to make sure I'm around to see them graduate from college (and pay for it).

Regards,

Jim Johnson

[greggo32]

Dear Jim,

I'm glad I was able to comment about pacing yourself prior to surgery. I was referring to any exercise that is above and beyond conditioning. Just stay in good health and don't push yourself. You have a lot coming up (new child and new valve). I see you have had a tremendous amount of feedback and that is great. Remember that all of the feedback is from a self-selected audience. You make the valve choice based upon your needs.

As for your question about my repair. I had 5 good years, 2 minor-moderately symptomatic years, and 2 moderate-severely symptomatic years. Overall, it lasted 9 years ('92-'01).

All the best and don't get too obsessed with all of the advice. You must trust your MD and surgeon.....

[Tom F.]

I would add to the discussion about the Ross Procedure. If you have not yet discounted it I would urge that you contact the International Ross Registry in Missoula Mt. for the most recent data about re-operations etc. They can also recommend people that have had significant experience performing the Ross. I had a David-type valve repair in Dec. of 2002 by Dr. Robert March at the Rush Heart Institute in Chicago. A Ross was my second choice. Dr. March has performed over 100 Ross's, so he might be a good choice. He is also one hell of a nice guy. My surgery was done on Dec 20th, I was released on Dec 24th, Christmas Eve. The next day, Christmas, he called me at home just to see how I was doing. Can't get much better than that.

[chilihead]

I'm off to see Dr. Ryan, The local Guru of doing the Ross procedure, next week. I figure if anyone can talk me into it, he can. Following our discussion I have to decide on the valve jobe of preference. My new baby was born two weeks ago, so that hurdle is over. Now if I can get myself fixed up we can move on and live happily ever after. I hope!!!!!!!!!!!!!!

Thanks to the forum members for all the information and support.

[nadi]

Good luck with your appt next week. Keep us posted.

Enjoy that new bundle of joy.

[Nancy]

Hi Chilihead-

Congratulations on your new baby! nd best wishes with your appointment. Let us know how it goes.

[sylviayasgur]

hi jim!
congratulations on the new baby! what did you have? name??? how is mom doing? and baby?
you must be thrilled... i remember that feeling... swollen heart (but for good reasons, not bad).

please let us know how it goes with dr. ryan and what he says.
wishing you all the best, sylvia

[Susan Allen]

Hi Jim,
Congrats on the new baby. I am in the same boat your in. I go see the surgeon on Mon.. Like you I am interested in the Ross Procedure. If you get a chance you should read www.hsforum.com/stories/storyReader$1473. Don't read the depressing story about the little boy Adam (I didn't). It explains the procedure in layman's terms. It gives pros and cons - patient selection etc.. It is really good. I can't wait to get as I call it stage 3 over - surgeon - date and valve choice (Stage one echo - stage 2 heart cath.).
I also have researched backup plan the Carpentier Edwards bovine pericardial valve. Type this in a search engine and read anything by the Cleveland Clinic. Very good reading. Like you I am sure I will probably go for the mechanical (some of the Coumadin stories are pretty scary - although I have to keep it in perspective that everyone is different.
I am also in Texas and am going to the Heart Hospital of Austin. Here they have a doctor who has supposedly performed the most Ross in the country. I was very impressed with the doctor who did the heart cath. as soon as I was done he spoke to me and asked me if I wanted to speak to a surgeon - I told him yes and he had one call me within 30 minutes in recovery to discuss when I could come in. The hospital was also very impressive - so I do feel good about going there.
Give that baby a big hug for me.
Let's keep each other informed.
Susan Allen

[chilihead]

Susan,

Thanks for the info. I'll le tyou know what I find out Tuesday. I was out for a bike ride last night with my local cycling club and I believe I'm starting to feel the "symptoms" of a person with a bad ticker. I rode hard and came in first place but really felt weird. Maybe it was because I was off the bike for two weeks with the baby business. What is the name of your surgeon? I'd like to see if he is by chance on my HMO insurance. The doctor I'm going to see has done over 100 Ross procedures but is not on my current HMO. If he convinces me that he can fix me up, I'll switch insurance during open enrollment in October and wait until it kicks in in January to get it done. Hopefully I can wait that long.

You can call ne at my office 817 935 4578 if you have question.

Here is a picture of young Jake Riley Johnson taken when he was about 2 days old at the hospital. He looks a lot better now and I'll get some digital shots in a day or so.

The password is JOHNSON
https://www.growingfamily.com/webnursery/babypage_view.asp?URLID=0S2B2L1U6L

Take care,

Jim

[bvdr]

What a darling picture! I am so happy for you. Now be good and sure you take care of you for them. Have a great day today.:)

[Susan Allen]

Hey Jim,
Your baby is sooo cute he looks chubby and healthy.
The surgeon I am seeing is Dr. Stephen Dewan. There is also Dr. John (Chip) Oswalt. Both are very experienced in the Ross. Both have travelled world wide performing the procedure.
Go to www.austinheart.com and click on for patients and it will list insurance and also has a number (512) 206-3636 if your insurance is not listed. You can also go to www.ctvstexas.com and there will be a list of surgeons (gives pictures and small biography), an area about insurance and articles you can read on the doctors I have mentioned above.
I have been doing so much research I can't find it off hand but the Heart Hospital of Austin was rated top in Central Texas as far as low mortality, patient treatment etc. Many of the doctors there have financial interests in the hospital. It is really impressive. The doctor who performed my heart cath. there was one of the founders and first president. He honored all my requests (2nd heart cath. so I knew what to expect and had a few things I wanted to be told in advance.) he recommended Dr. Dewan and told me he wouldn't hesitate to have him operate on himself or his wife. As soon as I told him in the cath. lab I wanted to speak to a surgeon he immediately got a hold of Dr. Dewan - and as I said earlier he called me right in recovery. Leaving this area for surgery would be out of the question for me. I have one at A&M and one at Austin Culinary and an 11 year old. My children and husband are my only family so I am hoping to coordinate everybody if they tell me I have time. I am also considering Dec. when my 2 oldest are on Christmas break and my husband's restaurant closes for 2 weeks. But I am not getting my heart set on it (sorry bad pun).
I see the surgeon this Mon. at 9:00 and hope to be back at work by noon or so ( live 70 miles from Austin and traffic is a joke). If you want to ask questions call me at work 1-800-759-8107(after 2:00) before you go Tues.
If not I may call you Wed. to compare notes.
Good Luck
Susan

[chilihead]

Susan,

I just read your reply. I'll try to call you on Wednesday. Best of luck!

Jim

[chilihead]

Well, time is passing and I must decide soon. I think the Ross procedure is in my future.

Regards,

Jim

[Susan Allen]

Jim,
Aren't you glad you made a decision???? My Ross procedure is (God willing) tomorrow. Can't lie I'm terrifed yet relieved. Soon it will all be over. Do you know when???? Are you going there in Dallas?? Did you solve you insurance concerns?? Who's doing it??
Sorry got a case of the nerves really bad - can you tell??
Good Luck
Susan

[chilihead]

I'm planning on getting Dr. William Ryan to do it at Presbyterian in Dallas. Where are you getting yours done. Feel free to call me at work. 817 935 4578.