Pleasure to meet all of. You give hope and understanding

[bdryer]

I am 55 years of age. I have dedicated my life to athletics. Work as a technician.

Last week I was diagnosed with a failing Aortic valve. According to the cardiologist, the valve only opens .6 of a CM. I was told 2 CM is the norm. Hence repair is not an option and replacement of the Aortic valve is required.

I only want to go through the hell and rehab of the surgery once! The Cardiologist recommends a tissue valve to avoid Warfain. I have been researching the St Jude and the on-x mechanical valves. OK, anticoagulant treatment is a must. I can learn to adapt to the regimented regime. The one draw back of the MHV is the noise. How noisy is the valve? is it that prevalent? Will the sound keep me up during sleep periods?

Every thing I read on the Biological valves reliability is depressing. I DO NOT WANT REPEAT SURGERY IN 5, 10, 15 OR EVEN 20 years ! Sorry to shout, just frustrated and reaching out for guidance.

Is the Ross procedure very reliable?

On the topic of anticoagulant therapy, I have heard their may be a break through using Scorpion venom. Is this so and if so, how far away is the acceptance of this therapy? Is their any other developmental anticoagulant therapy?

Any help in understanding my future options would be appreciated.

 

[AgilityDog]

I'm 51. I chose a mechanical mitral at 47, and a mechanical aortic at 51. I figure I may live another 30+years and I want to minimize surgeries. It's bad enough we had to do this in two stages, but that's what had to happen for me.

The noise is different for everyone, but really, it's no worse than a loud watch, and most times not even that much.
My boss sits next to me in a quiet conference room some days, and I can hear/feel my newest valve tick (noise bouncing off the big conference table I guess). He can't hear me. But I'm only 3 months from surgery! I expect it to get quieter, to where I only hear it in "that little room," just like with my mitral 4 years ago.

Managing coumadin is not an issue. No trauma there.

I figure if I live long enough to get alzheimers and can't manage my meds, and get stored someplace where my meds are mismanaged, a nice major stroke or five is better than living like a neglected vegetable for years and years. My health care power of attorney and directive to physicians specifically authorize/mandate withdrawal of my coumadin and other cardiac meds, and turning OFF my pacemaker. Go ahead, call me morbid, but I'm a probate paralegal, so I think about this stuff at work all day.

There are some new anticoagulants out, but they are not approved for valvers yet, just a-fib,and I understand the newest drug doesn't have an antidote. I'll let someone else be the guinea pig, thanks much. I'll stick with my rat poison.
Scorpion venom? I don't know nothing 'bout that, and would be LAST in line for bleeding edge treatments (pun fully intended)

 

[Duffey]

I am 55 years of age. I have dedicated my life to athletics. Triathlon, scuba diving, wind surfing, snow and water skiing with some weight training thrown in are my passions. I eat well [a KFC double down is not on my menu!] and enjoy a few beers. LOVE COFFEE!

I work 24/7 365 12 hour shifts. I am behind a desk in the operations center of a major airline. My duties are that of an aircraft maintenance controller. OK, I'm an aircraft tech to sum it up.

Last week I was diagnosed with a failing Aortic valve. According to the cardiologist, the valve only opens .6 of a CM. I was told 2 CM is the norm. Hence repair is not an option and replacement of the Aortic valve is required.

I only want to go through the hell and rehab of the surgery once! The Cardiologist recommends a tissue vale to avoid Warfain. I have been researching the St Jude and the on-x mechanical valves. OK, anticoagulant treatment is a must. I can learn to adapt to the regimented regime. The one draw back of the MHV is the noise. How noisy is the valve? is it that prevalent? Will the sound keep me up during sleep periods?

Every thing I read on the Biological valves reliability is depressing. I DO NOT WANT REPEAT SURGERY IN 5, 10, 15 OR EVEN 20 years ! Sorry to shout, just frustrated and reaching out for guidance.

Is the Ross procedure very reliable?

On the topic of anticoagulant therapy, I have heard their may be a break through using Scorpion venom. Is this so and if so, how far away is the acceptance of this therapy? Is their any other developmental anticoagulant therapy?

Any help in understanding my future options would be appreciated.

Hi and welcome!

If you want a mechanical valve, you should insist upon a mechanical valve. There are various threads dealing with how long it takes to grow accustomed to the sound of the valve beating in your heart. Use the search feature, and you'll find them.

The Ross procedure is not for everyone, and considering your age, I doubt that you would be a candidate.

I haven't heard anything about scorpion venom, but I don't deal with anticoagulation therapy so I wouldn't.

Best wishes as you go forward.:smile2:

 

[RobThatsMe]

Hi,

Welcome to the site. I hope you get some good answers to your concerns from the members here.

I agree 2nd AVR's and not desired, with each time they have to go in, the risks for the next one become greater.
I had my 1st AVR 10+ yrs ago, and then due to some complications with Pannus, had to have another AVR just 6 weeks ago.

I have been on Coumadin for 10+ yrs and have not had any major issues with it. As others have mentioned, there are new drugs on the horizon, much more so than when I had my 1st AVR. Hopefully, us valvers will be able to take advantage of these new advancements in the near future.

Valve longevity... Mechanicals are good. It is other issues mostly, such as Pannus, or scar tissue that can cause issues with the valves in the future. I should point out, that many people do not have pannus issues, and their mechanical valves last for years and years. Others, like myself are suspect to Pannus, and if so, then for sure, at the moment at least, the issues with it can remain. I had the ON-X valve installed this time. It does have some advantages to reduce, or deter pannus development at the valve.

As for the noise, you get used to it. I personally think that it sounds louder right after surgery, but as things heal up on the inside, it becomes a little more quite.
I believe that at the moment ON-X does not have an "Approved" valve with graft, but, they are in final testing for approval by the FDA for their model with graft. In my case, my surgeon used an ON-X and made his own graft.

Hope this helps, good luck with your search for information, and course of action.

Rob

 

[Cooker]

Side Bar: Good to see you Rob!

I have a St Jude ... was almost 50 when I got it and am 54 now ... I think it was louder right after surgery because I hardly every hear it now ... as far as warfarin is concerned it has not been an issue for me ... I went mechanical to try and avoid future surgery ... welcome and good luck ... you are healthy and will do well ... the pain and recovery is not near what you are probably imagining...

 

[ShezaGirlie]

Calgary Stampede..!

Calgary Stampede..!

Hi there and welcome!

I was also 55 when my valve went south.. I got a St. Jude valve which was recalled a few months after I got it. That was eleven years ago and I'm still perkin' along. I wasn't offered a choice, but I'm happy to be above ground..:biggrin2:

My cardio did tell me that age 55 is about "average" for calcified aortic valves to act up, so how's it feel to be normal..:thumbup:

 

[Greg a]

TO A FELLOW CANUCK
In another thread you asked about minimal invasive surgery and to that I would suggest you ask one of our Western Canada members "Freddie" can guide you to them as she is an active member
I am diabetic and so I compare home testing and anticoagulation dosing to that even though a bit more blood is needed for that test .... I test up to six times per day and take a min of five shots and each has to be calculated by carbs consumed and the reading taken sooooo if the choice was mine the testing and dosing is a non factor and having been through three OHS in one year it would be a no brainer (my wife says

that suits me JUST FINE

)

READ READ AND RE-READ then ask LOTS of questions​

[/

I am 55 years of age. I have dedicated my life to athletics. Triathlon, scuba diving, wind surfing, snow and water skiing with some weight training thrown in are my passions. I eat well [a KFC double down is not on my menu!] and enjoy a few beers. LOVE COFFEE!

I work 24/7 365 12 hour shifts. I am behind a desk in the operations center of a major airline. My duties are that of an aircraft maintenance controller. OK, I'm an aircraft tech to sum it up.

Last week I was diagnosed with a failing Aortic valve. According to the cardiologist, the valve only opens .6 of a CM. I was told 2 CM is the norm. Hence repair is not an option and replacement of the Aortic valve is required.

I only want to go through the hell and rehab of the surgery once! The Cardiologist recommends a tissue vale to avoid Warfain. I have been researching the St Jude and the on-x mechanical valves. OK, anticoagulant treatment is a must. I can learn to adapt to the regimented regime. The one draw back of the MHV is the noise. How noisy is the valve? is it that prevalent? Will the sound keep me up during sleep periods?

Every thing I read on the Biological valves reliability is depressing. I DO NOT WANT REPEAT SURGERY IN 5, 10, 15 OR EVEN 20 years ! Sorry to shout, just frustrated and reaching out for guidance.

Is the Ross procedure very reliable?

On the topic of anticoagulant therapy, I have heard their may be a break through using Scorpion venom. Is this so and if so, how far away is the acceptance of this therapy? Is their any other developmental anticoagulant therapy?

Any help in understanding my future options would be appreciated.

 

[dick0236]

Scorpion venom is a new one. Alternatives to Coumadin/Warfarin have been "just around the corner" for years, but warfarin remains the drug of choice. My experience with the drug is that it is very predicable. As long as it is taken/tested as prescribed, it causes few probllems. For most people, the "noise" is a non-issue that either goes away over time or you become used too. I agree that "once is enough" for this type of surgery. Stick around, this is a good place for information and discussion.

 

[Lionheart]

Hi bdryer,

Welcome aboard!

Since you very clearly and passionately have said that you want to avoid future surgeries and you said that you will be a compliant patient who will take his Warfarin regularly, then it's a no-brainer that a mechanical valve is the best choice to meet your need to reduce the potential for future surgeries. But first, make sure there is not some underlying reason with your lifestyle or medical history why the cardiologist wanted you to avoid Warfarin. You did not list "Professional Rugby" or another high-contact sport in your activity list, so it's unclear why your cardio suggested avoiding Warfarin. Be sure to talk to your surgeon and maybe your primary doctor and get their recommendations.

As far as valve noise, ask your cardio if he can let you meet another patient with a mechanical valve that you could listen to and see how loud it is. I imagine its something that you will get use to. Remember, this is an elective surgery, you choose (elect) to do it and generally you choose the valve.
Best,
John

 

[Mentu]

BD, shouting is allowed. 0.6 cm2 definately moves you into the severe category; you are right that a normal male aortic valve should have an area of 2.5 - 3.5 cm2. Your new valve will probably be closer to 3 cm2 than 2. My experience is that you are unlikely to find recoverying from surgery and going through rehab are very difficult. I was 59 last year and got through things well and was back at work 7 weeks after surgery which I think is pretty typical. I began Cardiac Rehab at the same time and it, too, proved to be uneventful but very helpful. Some people have more pain than others but I and many others experienced relatively little discomfort. Surgeons today do a wonderful job which really helps smooth the healing process. Since you have been living an active life, you will probably find that you need to take a measured approach to recovery but it will probably not present any signifigant problem. The biggest difficulty you are likely to run into is doing too much too soon and suffering a setback in your recovery. It is better to take things step by step and recover once.

As for your valve choice, people around the world are living comfortably with many different designs. Dick has one of the early generation ball in cage type which has served him for over 40 years. Your surgeon will help you select one.
Let us know how we can be of help.

Larry

 

[Freddie]

Hi there and Welcome bdryer and fellow Canuck.

Taken from the other thread:

Do you know of any hospital in Canada that performs the minimally invasive Aortic valve replacement technique? My preference is Calgary Alberta. Yea we are the province with the oil sands. LOL!


Personally I don't know anything about minimal invasive surgery (like Greg had thought), but I do recommend checking out Edmonton for any kind heart surgery.

Another member, Zipper2 (from North Battleford) had surgery done there. In her past threads & posts she names the surgeon, who from what I understand is very good...including bed side manners.

As far as a valve goes (perhaps your Cardio doesn't know much about warfain and tends to shy away from it??), I got a mechanical as my surgeon suggested. He told me 'he didn't think I would want to have this surgery again'. I was 46 at the time (I think). You can still have a beer or two while on warfarin, you can still eat and do (most things) what you normally are doing now before surgery....life goes on, no need to change.

The ticking of a mechanical valve during the early stages of recovery can be loud - everyone is different, but with healing and time the "tick" can fade away. It's been 3 years + for me, and I still here it in the shower, but have to listen carefully while in bed.

Hope this helps & keep in touch.

 

[ALCapshaw2]

Did your Doctor tell you NO MORE Weight Lifting until you 'get fixed'?
If not, he should have.

Are you SURE about those units of measurement?
The Usual Measurement is Effective Valve Area in SQUARE cm (a.k.a. cm^2).
In the USA, 0.8 cm sq or less is a common 'trigger' for recommending Aortic Valve Replacement.
At 0.6 cm sq, it is time to be interviewing Surgeons.
As an engineer, I am impressed by the technological improvements offered by the On-X Valves.
Do an Advanced Search for keyword "Bokros" to learn more about the man responsible (in part or total) for ALL of the leading Bi-Leaflet Mechanical Valves made in the USA.

'AL Capshaw'

 

[Lynlw]

Hello, I'm glad you found us. and really glad you got checked out it looks like it was just in time by your measurements. What made you decide to get checked? I'm sure you have all kinds of questions, ask away.
I haven't heard any thing about Scorpian venom, but there is alot of good research being done these days.
I was reading your profile, thats pretty cool you were on the national Sky diving Team

 

[bdryer]

Lyn, what dove me to get checked out you ask? I developed purple spots on my elbows and knees. I wanted to find out what they were. At first I thought they were trauma from sports crashes. Unfortunately they were spreading. I had not had a medical in over 20 years. Heck I FELT GEAT! Athletic performance was declining, energy level AA+ but I thought it was just that creeping age thing. The diagnosis from the Dermatologist was Granuloma Annular. No biggie he said, It will simply go away in about three years. Some kind of an autoimmune disease that the medical professionals can't put their finger on. Next step, the ECG. I flunked. The GP sent me to a cardiologist and now, here I am waiting for the coronary angiogram followed by surgery. I agree with those that have stated the waiting is the worst part.

Al, indeed the Aorta valve is only opening .6 cm sq as measured by a cardiac MRI. I did not know I had a heart problem until after the stress test. I never put my heart range into the max target range. Now my heart hurts. I'm serious now I know I have an issue. The tech who ran the test said it sounds like I have a second heart beat. The Doc called me a walking time bomb and said take it easy. Now I am struggling to taper form 1-3 hours of sports a day. I bought a heart rate monitor and that has been a real eye opener. I'm doing lt/med weights. I allow the heart to hit 88 BPM and then cool to 72 BPM before resuming. My resting rate is 66 BPM. I swim with a pull boy which floats the legs and do easy front crawl. The heart does not exceed 84 BPM. My treasured trail running is dead, or at least for now. Even doing the geriatric shuffle, my heart shoots to 140 BPM.

Freddie, I read about the noninvasive procedure on the web. The Mayo clinic performs this procedure. A little out of my budget. I'll stick to our Canadian health care system.

Dick [guy with old school ball and cage valve] you from what I gather, should sound like big Ben at high noon. He He! I have a plan for the noise. I sleep with a fan, allowing the white noise to blank out sound for sleeping in the day. I have been doing this since 1979. Heck, now I can't sleep without a fan running. I'll move the fan closer to the bed or accelerate it by one notch. If that doesn't work, I'm calling Tim Allen.

John, the cardiologist seemed to think Warfarin is a disability. He seemed to think it would hold me back from my life style. From reading and talking to folks on the drug, [like you kids] it really seems to be no big deal. Simply be consistent from what I understand is the key.

A few eyes have been raised about Scorpion Venom as an anticoagulant. A friend of mine who is on Warfarin for blood clots forming in his lungs has Doctor Hull, as his blood clotting specialized at his hospital. This Doc said they are within a year to 18 mths on a break out in the research and mentioned Scorpion venom.

Janie. OMG, they recalled the St Jude valve after the hell of just replacing it. These things must be aircraft parts! Thanks for spelling out the normalcy of having a calcified Aortic valve at 55. From my reading you are correct.

Larry. Dude you are bang on. I will struggle to stay dormant. I have screwed up every medical procedure by being active to soon. One day over beers, I will explain my experience of being too active too soon after a vasectomy. John Wayne couldn't be any more bow legged! This is a one shot deal and I will follow the recovery plan. Hmmm, Demerol and a straight jacket would help.

Greg[the human pin cushion], you prick yourself how many times a day? All I have to do is check my INF once every 2 wks. Noproblemo!

Rob, most en-lighting this Pannus thing that plagues you. It's cool that the On-x valve may be your saviour. Do scars from flesh wounds run rapid? It's got me thinking that the On-X AV is the part of choice.

Laurie, hey I love your cure for Alzheimer's! LOL!

If I missed anyone sorry. I thank you all so much. I have been recording game 2 of the world series, [ thankfully I can fast fwd thu the commercials]. Gotta run.

Regards

 

[Lynlw]

Bruce, This reply to Freddie makes me wonder if you are talking about the same things

"Freddie, I read about the noninvasive procedure on the web. The Mayo clinic performs this procedure. A little out of my budget. I'll stick to our Canadian health care system."

Freddie was talking about min invasive surgery, with smaller incisions (Heartdoc has a thread going on about thiem) you MIGHT be thinking about the percutaneous valve replacements that are done in by Cath with just the small hole pretty much like a normal cath. Right now they are still just doing them as trials for very hish risk patients.
There are a few Hospitals in Canada that do mini invasive valves with either a smaller cut in your sternum or between your ribs. The recovery is usuall much easier. Altho some poeple (My son and others) who have thieir fullsternum cut say they don't have real pain, more it is uncomfortable..Other people have had more pain...(IF you are having pain..tell the nurses) now the muscles get sore and achy too

So it looks like those purple spots may have saved your life

 

[bdryer]

Lyn, you are correct, the purple spots did save my life. I am going to contact the dermatologist and tell him what happened. As the medical pros do not know the cause of granuloma annular, this may enlighten them that it is a possible symptom of heart problem. I saw a natural path and he said the purple spots were a cause of bad blood. No kidding! If only he knew how close to the truth his assumption was.

Regarding what I thought was non evasive is how you described it, min evasive.

 

[RobThatsMe]

[QUOTE=bdryer;Rob, most en-lighting this Pannus thing that plagues you. It's cool that the On-x valve may be your saviour. Do scars from flesh wounds run rapid? It's got me thinking that the On-X AV is the part of choice.

Hi Bruce,

The Scars don't run rapid. My original surgey sternun scar from cutting me open was 97% invisable after 1 year. And since they followed the same path for the second, it is hardly noticable. I do however have a few new ones from them also doing some work on my aneurysm, and bipassing one of my carodid arteries from the false lumen into the true lumen. So now I get more blood into my brain. hmmmmm... that could be dangerous. LOL. The true and false lumens are caused from dissection.

As for pannus or scarr tissue, I don't think it progresses real fast. My original mechanical valve was in place for 10 years. About 2 years ago, my doctor noticed some narrowing around the blood intake, so he began setting me on a sechedule to have echos done every 6 months. Earlier this year he said I needed to address this issus now, or chance would be real good for my to have a major cardiac event within the next year that would most likely be deady. The normal openning into my valve should have been 1.8 cm. I was down to 0.4 cm. But now.. New valve, and tons of stuff fixed under the hood while they were in there.

All the best,
Rob

 

[Lynlw]

Lyn, you are correct, the purple spots did save my life. I am going to contact the dermatologist and tell him what happened. As the medical pros do not know the cause of granuloma annular, this may enlighten them that it is a possible symptom of heart problem. I saw a natural path and he said the purple spots were a cause of bad blood. No kidding! If only he knew how close to the truth his assumption was.

Regarding what I thought was non evasive is how you described it, min evasive.

IF you are interested in the minimally invasive instead of a full sternum cut there ARE plenty of heart centers that do them.
If your interested in learning a little more about them so you can ask your docotrs, here is a pretty good page that has the basics. http://my.clevelandclinic.org/heart/disorders/mini_invasivehs.aspx

Heart centers in Canada are also taking part in the trials for perrcutaneous valve replaces too, but right now the only people (in the US and I believe Canada) that can have the noninvasive (cath) Aortic ones are high risk patients, that are not candidates for surgery. Altho they will be starting trials soon including lower risk patients. It is still to early for most people that need their valve now, but hopefully if someone gets a tissue (most likely not mechanical) valve now, by the time that needs replaced it will have a very good chance of being percutaneously replaced. Here is a story about them being done in Canada http://www.montrealgazette.com/heal...romising+high+risk+patient/3727242/story.html

Things like your purple spots amaze me, how something can happen just in time for something major to be picked up, like your heart, that you might not have found about until it was too late if not for the spot..IF you believe like I do, something/or someone was really looking out for you.

 

[bdryer]

Rob, down to .4. Makes my .6 seem like the Grand Canyon. LOL!!! You and other AV recipients have sure got me thinking the ON-X is the present technological advancement of choice. I have no idea what the surgeon will recommend.

It's good that you do not scar heavily on the skin. I thought if you did, their would be some correlation with Pannus build up on the AV.

Thanks

 

[Freddie]

Not sure why these purple spots didn't click with me sooner, but my dad had purple spots on his arms and hands. It was said that it was due to poor blood circulation.

Don't mean to scare you Bruce, but have you searched this out on Google?