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
[email protected]

 

[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]

Hi Jim

Hi Jim

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. 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. 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]

Thanks

Thanks

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]

Christmas

Christmas

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]

Jim

Jim

Hi again.. If you will notice..my avator, is that of a big fat mother-hen..I am the Granhen of the group.. 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 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