Newbie

[Mike1952]

Hello all,

Reluctantly, I am a new member of this club, I guess! I just turned sixty in June and was an avid jogger. I am in the middle of building a vacation/retirement home, mostly by myself. In the last few months, I have occasionally gotten dizzy for just a very short period so my family doctor sent me to a cardiologist. The day I visited him, I jogged 3 miles. He heard a murmur and had me do an ultrasound. I was shocked to find out I have a severely leaking aortic valve! So, in the past month, I have quit jogging and am now walking. I am beginning to feel the heart, sort of an ache at times. My LV is enlarged to 6.8. I am scheduled to visit a surgeon in ten days.

I have begun doing a lot of research on the internet and found this forum. I am leaning towards a mechanical valve and am interested in the On-X valve. Does anyone out there have that valve and if so, what has your experience been?

I am scared, mostly of all the procedures and the process. On the other hand, I am looking forward to getting this fixed and hopefully, returning to an active life, maybe even jogging again. Is that realistic?

Appreciate reading everyone's experiences,

Mike

 

[dick0236]

I am scared, mostly of all the procedures and the process. On the other hand, I am looking forward to getting this fixed and hopefully, returning to an active life, maybe even jogging again. Is that realistic?

Mike

Hi Mike. There are many on this site, from around the world, who have had the On-x valve, as well as a number of the other brands and I am sure they will be along and post their experiences. I would not worry about "returning to an active life". Most of us have found that our valves have placed few limits on our lives and lifestyles. There are many who jog, run, build cabins (I built mine, mostly by myself and wife, over a ten year period, starting about 15 years AFTER the surgery.) The key to a successful surgery with no long term "downsides" is having the surgery before lasting damage is done. Welcome aboard!!

 

[tprice54]

Welcome....you will find lots of On-x owners here, although I have a tissue valve myself. Jogging? No problem, I myself have a few full marathons and some half marathons under my belt post surgery.....but I prefer the term running!

 

[Mike1952]

Welcome....you will find lots of On-x owners here, although I have a tissue valve myself. Jogging? No problem, I myself have a few full marathons and some half marathons under my belt post surgery.....but I prefer the term running!

That is very encouraging! I'm really glad to have found this forum!

 

[Mike1952]

Wow! Thanks, ****! You are a real success story for sure. I like the "one day at a time" philosophy.

 

[Greg a]

Wow! Thanks, ****! You are a real success story for sure. I like the "one day at a time" philosophy.

Count on **** to tell it like it is LOL MIKE,a heart felt WELCOME to our OHS family glad you found the site , there is a wealth of knowledge here for the future ... and I have listed some links for your research and prep ....WAITING IS THE WORST PART..

Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/foru...4&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/foru...t-of-questions

what to take with you to the hospital http://www.valvereplacement.org/foru...al-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/foru...House&p=218802

These are from various forum stickies as mentioned above and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[Bina]

Hello and welcome to the gang. We are a diverse age group with varied experiences; don't be shy to ask anything.

 

[Jkm7]

Hi Mike,
Welcome. Happy you found us but sorry for the reason.

It is extremely realistic to think ahead to a full, active life doing (most) of the exercise and activities you enjoy. Marital Arts, running, kayaking, cycling....... We are very lucky to live in a time when our valve can be replaced and we can continue with almost all activities we did pre-op.

 

[Lynlw]

Hi Mike,
Welcome. Happy you found us but sorry for the reason.

It is extremely realistic to think ahead to a full, active life doing (most) of the exercise and activities you enjoy. Marital Arts, running, kayaking, cycling....... We are very lucky to live in a time when our valve can be replaced and we can continue with almost all activities we did pre-op.

First off Hi Mike, Glad you were able to find us and hopefully set some of your normal worries aside. As everyone said there is NO reason you can not go back to running or other activities, after having your valve replaced, some things chances are pretty good you will o even better at than you can now with your valve problems. The only thing I wanted to mention with some of the activitie JK talked about, IF you choose a mechanical valve and so need to be on Coumadin, (or some other anticoagulent in the future) it is usually reccomended you dont do some of the more extreme sports that head injuries can be common in, even tho wearing a good helmet can even lessen some of those problems.
But as far as your heart itself after surgery and the recovery period you should be "good as new" as far as being able to do activities. My son is 24 and even tho he was born with pretty complex heart defects and had his first OHS at 10 days old and 2nd at 18 months, he never was a runner, but was able to play most sports except football growing up, ( he has a tissue valve and conduit and isnt on any meds) if that helps.

 

[Rachel]

Hi and welcome Mike!

I too am a runner, and I still run one year after my OHS. I have a tissue valve but I think you'll find others with mechanical valves who run and are quite active.

Facing surgery is a scary time, but I think waiting is really the toughest part and hopefully you won't have a long wait!

Rachel

 

[Mike1952]

Thank you all for responding, it really is encouraging! It will also be really helpful to have some knowledge prior to my appointment with the surgeon on the 17th. I will look up all the links from Greg as a starter. Lyn, I can't imagine how tough it was for your son (and you) to have faced such challenges at such a young age. Hey, this is a pretty exclusive club!

One thing I am wondering about is how long will I need to be off work. I have enough time saved to be off five weeks. I do work in an office environment so the commute to and from work may be the biggest challenge. I drive 8 miles to catch a train to work presently. It seems most people have a fairly long recovery period before their energy levels return?
I am planning to retire in January, maybe I will have to retire early? Thanks again!

 

[Jkm7]

We all heal at a different rate but it is not unrealistic to think you could return to an office job at 6-8 weeks post op. Your commute might be tiring for you but many of us would have been able to handle that. Our surgeons/cardios seem to vary as to when they permit us to drive again. My first OHS, I was not cleared to drive until 8 weeks. My second surgery, four years later, at the same hospital with same surgeon and cardio and I was cleared to drive at 2 1/2 weeks. It is very variable.

You mention you are sixty years old and I wonder if you might want to give serious thought to tissue valve. A great majority of surgeons often lean towards tissue valve for their patients who are 60 and over. Many also are agreeable to tissue valve for patients a good deal younger. Of course, type of valve choice is a difficult decision we all face and there is no wrong choice. Do lots of reading here and on the web and decide, in conjunction with your doctors, which you think is your best choice. Some desire to avoid life long coumadin and are concerned about whether their mechanical valve might be loud.

Depending upon how close to January you schedule your surgery, unless you have a most unusual set of bumps during your recovery, there probably isn't a need for you to retire any earlier than you had planned.

 

[Mike1952]

We all heal at a different rate but it is not unrealistic to think you could return to an office job at 6-8 weeks post op. Your commute might be tiring for you but many of us would have been able to handle that. Our surgeons/cardios seem to vary as to when they permit us to drive again. My first OHS, I was not cleared to drive until 8 weeks. My second surgery, four years later, at the same hospital with same surgeon and cardio and I was cleared to drive at 2 1/2 weeks. It is very variable.

You mention you are sixty years old and I wonder if you might want to give serious thought to tissue valve. A great majority of surgeons often lean towards tissue valve for their patients who are 60 and over. Many also are agreeable to tissue valve for patients a good deal younger. Of course, type of valve choice is a difficult decision we all face and there is no wrong choice. Do lots of reading here and on the web and decide, in conjunction with your doctors, which you think is your best choice. Some desire to avoid life long coumadin and are concerned about whether their mechanical valve might be loud.

Depending upon how close to January you schedule your surgery, unless you have a most unusual set of bumps during your recovery, there probably isn't a need for you to retire any earlier than you had planned.

Well, initially I was considering a tissue valve. I don't like the idea of the coumadin for life. But, people in my family tend to live to be 85 or older so I am concerned about the possibility of a second open heart surgery. That is one reason I was considering the On-X valve. I understand there is a study that is almost complete to see if lower levels of coumadin are safe (or even aspirin and plavix). A nurse at Cleveland Clinic told me about a study where aortic valves are being replaced through a vein in the groin and that is going well. So, maybe a second valve could be done that way versus open heart surgery. Lots of questions and pros and cons for any option!

 

[Jkm7]

Both things you say are accurate.
There is an on-going study of On-X valves and if it was not going well, there is a good chance they would have stopped it. We have members here on Vr.org who are participating in the study.

You are also correct about percutaneous valve replacement (through the groin rather than open chest) and they are currently being done successfully. In U.S., patients having valve replacement by that method are mostly those who are too ill for conventional surgery. It is not some far off in the future method. It is a reality today.

It is a hard decision we all make and in the end, we all come to a choice and it is best to never look back once you have made your choice. There is no wrong choice.

 

[epstns]

Hi, Mike!

I was 63 when I had my aortic valve replaced. I chose the Edwards bovine pericardial tissue valve, knowing full well that if I live long enough, I could require another replacement. My surgeon (a very well known and highly regarded guy) explained that it is possible that the tissue valve may last the rest of my life, but if it does not, it is possible that percutaneous replacements may be mainstream in this country. I decided to take my chances, so as not to have to worry about anti-coagulation.

I, too, was a long-time runner/jogger prior to my surgery. Since I had some complications in my surgery and recovery (and ended up with a pacemaker), it was a bit slow going at first. I was able to go back to work at 6 weeks, but I didn't start cardiac rehab until 3 months post-op. Rehab was a great help (I recommend it to you, too), but even with 12 weeks of therapy, I was not able to get back to running yet. I probably could have, but needed a couple of rounds of adjustments on my pacer. Now, at 16 months post-op, I am back to being able to jog - probably better than the 6-12 months before surgery.

As the others have said, we all heal at different rates. That said, we DO heal, and if you keep at it, you can get it all back.

 

[scott.eitman]

Yes, you should very well be able to live an active lifestyle. I know I am a little younger, but you should be getting the valve fixed and be able to join the active group again. See my heart story at http://www.mendedhearts138.org/Inspiring

Stay well
Scott

 

[AgilityDog]

I have 2 mech valves, the aortic being the On-x 'cause I liked the idea of reducing the risk of hemolytic anemia when implanting the second valve. I DO have restrictions on my activity: I can sprint, but not jog, as a result of mucho heart damage due to late diagnosis. Basically, my heart is patched together with spit and baling wire, and runs on a battery. In other words, 2 mech valves, another repaired valve, a maze procedure, complete heart block, pacemaker dependent, with arrythmia issues.
Get your surgery done as soon as you can and avoid the nasty complications.

Of course, I wasn't a runner BEFORE surgery, though I was better able to handle the longer agility courses. Some of them I have problems with these days. Do NOT give me a course with a fast straight run at the end of 175 yards, and an off-course tunnel. I'll lose my tunnel sucking dog every time! Gee, that's the worse of my problems???

 

[Mike1952]

The main theme I'm hearing from all of you is to be patient and just know it will get better. I don't really have to run again necessarily, my knees have been telling me to do something else for a couple of years! But, it is encouraging to know within a year or so, things will be good! Agility Dog, I will definitely be asking the surgeon and my cardiologist if we shouldn't get this done (not wait for damage). You are all inspirational to me! Thanks!

 

[Bill B]

See what your surgeon says. Nearly all will let you choose just about any valve you want, but they usually have a recommendation, occasionally a very strong one, once they understand your medical situation. Mine did. I worked over this issue for months before I decided he was right all along the night before surgery. It's important that you have a high level of trust in the surgeon. This surgery has become rather routine and is overwhelmingly successful, but having that extra faith in the surgeon made it easy for me to just relax and not worry during the pre-op period. If the surgeon recommends surgery very soon, try to accept it and just go. You'll be thankful later.