Yankeeman

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yankeeman

Well-known member
Joined
Jul 19, 2004
Messages
53
Location
Massachusetts
Hi.

Thank you for your responses, Kevin 21 and Tobagotwo. I apologize for not responding sooner, but I have a limited amount of private time to do this. And frankly I'm having a little trouble figuring out how to use this site. Thread? Parse links?

I appreciate your feedback. I'm 57, have an ejection fraction of 65-70 (had my fourth echo today) and see my cardiologist next week for an update on where I stand. I'm experiencing some general fatigue and my heartbeat sure seems a little louder t han it used to. Some dizziness...or am I just imagining this? I probably have a bivalve and have mild-moderate aortic stenosis and regurgitation.

I ve been told I'll probably need surgery to install a mechanical valve before I'm 62. Not really clear how soon. Frankly I'm really not sure I want to find out. All this coumadin sounds like a problem I'd just as soon not deal with.

Do you know about coumadin and what effect it has on your life? What is the general quality of life after a valve replacement? Is there a significant improvement in energy level? How do you pick a surgeon, if you can? Thsi isn't exactly a yellow pages matter.

I must say having this site around is a great service and will give me comfort as I get closer to having my chest cut open and having someone jam a tube down my throat. You people have been there. The cardiologists and surgeons have not.
 
Hey! Yankee Man!!! LOL

Hey! Yankee Man!!! LOL

Hi There Yankeeman,
I saw your post and wanted to let you know that I am in NH (Rochester to be exact) I am 38 and facing similar problems and just wanted to welcome you to Valve Replacement, and to let you know you will find ALL KINDS of wonderful people and support from those with the common heart problem...Just wanted to welcome ya. Take Care, Harrybaby666 :D :D :D :D
 
Yankeeman,

WELCOME!

You are on the right site to get educated on the whole process.
It may seem a little confusing to you right now but the site is real easy to navigate around once you are a little familiar with the format. There are several broad topic areas called forums. The subtopics in the forums are called threads. You are posting in the pre-surgery forum and that is the right place to find a wealth of information in past threads.

The first suggestion I would make to you is to make sure you get copies of all the tests you have done. You are intitled to this by law. Keep a folder with your results for your own reference.

Don't ignore your symptoms because that is one of the things that determine the "when". Many, many of us believe it is much better to get the valve replaced while the rest of the heart is still healthy. It seems to give the best final result.

Don't just assume that you will get a mechanical valve. There are other options available in valves that often side-step the need for coumadin.

Others will chime in and maybe tell you how to search for past threads and also welcome you.

We are a great big family around here so hang around and before long you will be so knowledgeable about your condition that you may well amaze yourself!
 
Welcome, Yank - good to see you here. You can get all the info on any valve subject here in VR. I can't give you any, tho, as I had bypass, not valve. But there will be lots of others who will come along in the next day or so and answer any and all questions (and some you don't know about yet) to help you get acquainted with the subject.
 
Hi Yankee,

I'm 49, turning 50 next week and had a mechanical AV installed 2/20/04. Coumadin is not a problem for me and is relatively easy to live with once you understand how it works and what doesn't work well with it. This site will help you figure all of that out.

Quality of life after valve replacement? Better sit down for this one- if you don't get the valve replaced, you will have NO quality of life- you'll be dead! And for me, my life improved 500% with a mechanical valve - I can do things I could never do before, exercise daily and feel great. I've lost weight, have more energy and a new outlook on life.

Don't wait for your cardiologist to tell you when you need surgery. Gather up copies of all of your echo and cath reports and get to a surgeon or two right away. Ask people here on the board for recommendations for surgeons in your area - we've got members here from all over the world.

Glad you found us - stick around and read some of the older threads. Just use the search function to find things you're interested in.
 
Hello Yankeeman,

You can learn a LOT about the Valve options in the Valve Selection Forum. EVERY valve has it's own set of positive and negative aspects. Most of us choose the valve whose negative aspects we feel we can best live with. It is good to make a SECOND choice as well, just in case your valve of choice is not viable once the surgeon 'gets in there'.

IMHO, it is best to let the SURGEON decide when to operate. They prefer to operate BEFORE your heart suffers from PERMANENT DAMAGE to the muscles and walls. Unfortunately, many Cardiologists prefer to postpone surgery until the LAST MINUTE which often results in diminished capacity and benefit. I vote with the surgeons on this one!

I have a St. Jude mechanical valve and have been on Coumadin for 2 years with no problems. This was NOT my choice but resulted from complications due to radiation damage for treatement of Hodgkins Disease many years ago. My first choice was a Bovine Pericardial Tissue Valve which has a track record approaching 20 years longevity in ACTUAL USE with 90% durability. Coumadin is usually NOT required with tissue valves unless you suffer from other complications such as atrial fibrilation that cannot be controlled which may occur in some (rare) cases.

I second the recommendations made by Raverlaw. Best to gather all of your test results and either request a referal to a surgeon or begin your search NOW on your own. You may want to interview more than one surgeon, especially if you are interested in some of the less common valve options. You will want a surgeon who has LOTS of EXPERIENCE with your Valve of Choice.

Good Hunting !

'AL'
 
Hi Yankee

I'm Evelyn, whose husband, Tyce, had AVR in June of '02. He received a St. Jude's mechanical and has been on coumadin/warfarin for the last two years. We have not had any real problems with the coumadin. However, we do have a Coaguchek machine and do home testing weekly. Tyce's quality of life is just the same as pre surgery. He was 59 when the surgery was done and has just turned 62. He just had an echo done and his ov was wonderful. I can't imagine what our situation would have been if he didin't have this surgery.

I absolutely agree with Al when he said to let the surgeon decide. We were very lucky in that we're friendly with our cardio and when Tyce went into afib , John said, it's time......But I do feel that many cardios postpone things till the muscle has enlarged too much.

I wish you the very best of luck choosing your valve. You will find much support at this site. For us, I can say that TYce said he never wanted to go through this again and that was the main reason for our choice of the mechanical.....that and the surgeon's recommendation.

Good luck.

Evelyn
 
Welcome, Yankeeman. I'm one of the older (not age-older but had-my-valve-longer) patients on the forum. I had my mitral valve replaced seven years ago when I was 33 and really did it on blind faith and the cardiologist's recommendations because we didn't have great Internet access at the time. Use this great tool (Internet) and communication that you have on this forum to help you make an informed decision. As for the coumadin, well it's not the great bogeyman that people (mostly doctors) make it out to be. Now don't get me wrong, it must be monitored very closely, but as you'll find out from many here, you can actually purchase your own machine now and do monitoring yourself. I haven't done that yet, but I've just been lazy, plus I have a very good relationship with my wonderful coumadin nurse. Again, welcome to our wonderful site and hope we can help you as you begin your OHS journey.
 
Yankeeman

Thank you all for the information about valves and when to go forward with the surgery. It had never occurred to me that the surgeon and the cardiologist might differ on when to do it. I did hear in the past that the damage increases the longer you wait.

As far as mechanical valves are concerned (probably my choice) are there different kinds. I've heard that the St. Jude's valve is the best. Is there a ticking sound that others can hear? Will I sound like the crocodile in Peter Pan?

How long is the recovery period? I've heard it can be as much as three months. Can you collect disability while you're out? Do you have to use a bedpan while you're recovering?

Dumb questions, I know. But this is what I need to know before I decide what to do.
 
Yankeeman,

I have a St. Judes mechanical. I can hear it ticking if Iam in a very quiet room, such as a tiled bathroom, or at night before I go to sleep. I find the sound comforting and not annoying at al. My wife can't hear it, not even when she is in bed next to me, and she is very sensitive to that kind of noise - we don't have a ticking clock in the bedroom because they keep her awake.

My kids can sometimes hear the valve when I can't - I guess their hearing is much more acute than adults. It just hasn't been a problem at all. The carbomedics web site has a great audio comparison of six different mechanical valves. Carbomedics

Recovery for me took about six weeks. You don't need a bedpan - you will be up and walking your second day in the hospital, and fully capable of using the facilities on your own. You will need a comfortable chair, preferably a recliner, as you will need to elevate your feet while resting, and you may have trouble sleeping in a prone position for the first week or two.

Disability would depend on your state rules. You won't be capable of driving or working at most jobs for at least four weeks.
 
Hello again Yankeeman

There are some new developments in mechanical valves. St. Jude has a new model (I forgot the name) and ON-X has a VERY INTERESTING Website describing their innovations. These 'third generation' valves have improved flow characteristics based on the principals of fluid dynamics, yielding greater volume of flow with less turbulence (and therefore less liklihood of forming clots).
You can find a link to ON-X by using the SEARCH tab on VR.com St. Jude also has a web site.

Recovery comes in stages. The first two weeks you will feel like you had an encounter with a Mack Truck (NOT pain, but total exhaustion after very little exertion). Do your BREATHING, WALKING, and NAPPING religiously and you will find yourself able to do more each day, little by little. At 6 weeks you should be feeling pretty good and your sternum should be 'mostly' (85%?) healed. Many people are able to return to non-physical work at 6 to 8 weeks. Your sternum should be FULLY healed at around 12 weeks. I HIGHLY recommend Cardiac Rehab if your insurance will cover it. Read over the Pre-surgery and Post-surgery Forums and you will see several perspectives on recovery. Many of us found that we continued to improve our stamina and capabilities for up to a year, sometimes even more, especially for those of us who had more than one OHS. Age is also a factor, especially over 60.

There's a LOT of reading to do, but it is the best way to prepare yourself mentally and emotionally.

Oh yes, we were ALL scared. Knowing that others made it through and are living well helped us to face the inevitable willingly.

'AL'
 
Hi Yankeeman,

I must have missed your post yesterday by a short while -- usually only get time to check in here in the AM before the office gets too busy.

I'm about the same age as you (I'm 56) and have similar issues -- (probable) bicuspid aortic valve, moderate aortic stenosis, ejection fraction of 60-65%, little bits of regurgitation among the other valves, etc. Thus far, the only "symptom" I've experienced is the fact that I get tired earlier in the evening than I used to -- never was a "night person" though, so I just have less energy. I still jog 4 miles, 5 days a week, and lift light weights to maintain muscle tone. My cardiologist and I are keeping a close watch for ventricular enlargement or other signs of heart wall thickening -- when that does begin to show, I'll press for immediate consult with at least one surgeon. In the mean time, as long as things are stable with no significant enlargement, etc., I'll stay with twice yearly visits to the cardio and annual echos. Of course, if I feel ANY of the "cardinal" symptoms (shortness of breath, dizziness or fainting, chest pain) I'll be right at the ER and/or cardio's office.

Welcome to The Waiting Room -- our virtual lounge where we can live and learn while we wait for whenever our own surgeries may be. Visit often, ask questions, and try not to get too stressed out (yeah, I know, easy isn't it?)
 
Yankeeman

Thank you all for answering my questions. it brings me great comfort knowing that there are others who are facing the same challenges that I am. I have a great cardiologist but as most docs he doesn't have a lot of time to answer questions.

Here are a few more for those of you who have time...

The doc says that diet is not an issue...i.e. that it really won't help improve the situation if I change my diet. Does that make sense?

Also, what about weight loss. Will having less of a burden on the heart prolong the period that I can go without having this surgery. I doubt that I will be able to continue working after I have it so I'm trying to stall until I'm 62 and can collect Social Security.

Are the statistics concerning sudden death and death in surgery correct. The cardiologist says I currently have only an average risk of sudden death and that the surgical death rate is about two percent.
Sound right?
Thanks to all. You are great.

l
 
Weight Loss is GOOD. The less weight you carry around, the less your heart has to work.

If you are experiencing symptoms at 58, planning on postponing surgery until 62 seems VERY UNREALISTIC, assuming you live that long. When a valve shuts down, IT'S ALL OVER. END OF GAME.

Even if you were to survive that long, if your valve is closing, you will do PERMANENT IRREVERSIBLE DAMAGE to your heart muscle which will greatly diminish your capabilities even AFTER having the defective valve replaced. From a surgical recovery point of view, SOONER IS BETTER.

Survival rates are VERY GOOD for this surgery when done by an experienced surgeon who does this regularly (200 per year) at a hospital that has a high volume of heart surgeries. (Practice makes perfect :) )

Overall, survival rates are 97%. This increases to 99% for those under age 60 who are in otherwise good health and this is their first OHS.

The key is to find a surgeon who has LOTS of experience with the type of valve you prefer. START LOOKING !

And listen to the SURGEON when it comes to choosing the TIMING for surgery.

'AL'
 
Welcome!

Welcome!

You have found the perfect site to ask questions from people who have experienced all what you are going through.

I have had two surgeries, my first one was 22 years ago when I was 28. I had my mitral valve replaced with a Bjork Shiley. This past Nov. I had that valve removed due to Coumadin issues and replaced with a bovine valve. Both surgeries were done at NEMC in Boston.

There are plenty of good doctors in MA especially in Boston. I would advise you to go into your next cardiologist appt. with a list of questions written down. I am sure your doctor will take the time to answer all your questions. If he doesn't, maybe it is time to look for another cardiologist.
 
Hello to all.
I'll see my cardiologist tomorrow for my annual checkup. The echo last week indicated everything's OK, but I wonder if what you say is true and that cardiologists are unnecessarily reluctant to order surgery when by doing so they would prolong the life of the patient. Don't suppose the fact he works on a salary for an HMO (persumaby with profit sharing) would have anything to do with that..

Also, I note that some you are from the Boston area. Is Brigham and Women's the best place to get this done? I just plan on having this done once and I'd just as soon that it be done right...

Any suggestions on hospitals and surgeons in the Boston area?
Thank you to all. I can visit only infrequently but all of you have been very helpful.


o
 
Valve choices and diet

Valve choices and diet

Brigham and Womens and Mass General are both rated excellent for this surgery nationwide (B&W slight favorite).

If you have to have this, Boston is not a bad place to be near.

Your doctor speaks the truth. Aside from losing some weight, if needed, diet does not seem to affect how quickly the valve deteriorates. However, if you have blockages of the coronary arteries, a poor diet won't help that. I assume you don't or your cardiologist would already be showering you with xeroxed lists of salt-free, calorie-free, fat-free, high-fiber, non-food items.

I would not avoid the threads in the Coumadin Forum, as you will get a much truer picture from those here who use it than you will ever get from a doctor or cardiologist. Some see it as a discipline, some as no problem at all, and some as a burden, but at least your understanding will not be from a brochure or a well-intentioned, underinformed cardioloist.

I was told by two cardiologists and a PCP that "of course" I was getting a mechanical valve (because I am 51 yrs old). I decided against it, because I did not want to live with the monitoring, limitations, and daily risks of Coumadin use. They were scandalized that I would think such a thing (except the PCP - he did relent after I explained my reasoning).

When I went to the consultation with the surgeon and told him I didn't want a mechancial, I winced, waiting for his response. Instead, he relaxed and said, "Good. We wouldn't want you to have one." Friend for life. Apparently, he was going to counsel me that tissue is his preferred method, and I had just saved him a lot of time. We spent some time philosophising over the features of the current models, and it was fun, once he realized I knew the specs as well as he did. Kind of like talking about a common hobby.

The stats indicate that the survival odds are equivalent for either choice. I'm not trying to "win you over," but I want to make sure you're not being pushed through the chute by your cardiologist, as I almost was. Both valve types are entirely valid choices at your age.

If your heart is set on a mechanical, the new ones include a St. Judes model, the ON-X, and an Italian model, the Sorin. These models are more tolerant of INR fluctuations (which you keep tabs on with blood tests on Coumadin). In comparison to other mechanical valves, they claim to develop fewer clots, do less damage to the red blood cells, and are quieter than the models made only a few years ago (less ticking).

There are websites for the mentioned mechanical valves:
Sorin BioMedica: http://www.sorin-cid.com/bicarbon.asp
St. Judes: http://www.sjm.com/devices/device.aspx?name=SJM+Regent®+Valve&location=us&type=18
ON-X: http://www.mcritx.com/valves.htm

and also these tissue valves:
Mosaic porcine: http://www.medtronic.com/cardsurgery/products/mosaic_index.html
Edwards Perimount Magna bovine: http://www.edwards.com/MedicalProfe...x?ItemId=304ABBA7-C9B8-4BA1-87E7-704BAF356F25

Happy hunting,
 
Yankeeman

Thank you Tobagotwo and pgruskin for your information about hospitals and surgeons. It will be very helpful when the time comes for me to have my valve replacement.

I do have another question for you or any others who may be more familiar with the terminology than I am. My cardiologist last week told me that my surgery will probably be necessary in between one and five years. Now...he says that the echo indicates that my Doppler gradient was 66, which compares to 55 two years ago and 25 four years ago. Given those numbers (I think the Doppler gradient refers to the comparative pressure on either side of the aortic valve) will the surgery most likely be necessary closer to one year from now or closer to five years from now, assuming that the stenosis continues at the same rate?

Anyone willing to give that a shot?

Thanks. Important I know as far in advance when thsi will happen.
 
It doesn't progress at the same rate. The worse it gets, the faster it gets worse.

But the answer is closer to one year. 66 is high. Normal is less than 10. You're starting to have symptoms, now. I had Ginger Baker/Gene Krupa going on in my chest at night, too, or when I ran for the phone. I would get "grey tired" at night.

I didn't want to believe it, but it gets convincing after a while. Things just take more and more effort. If you're stubborn like me, you'll try to ignore it or work around it for much longer than you should.

Your echoes are likely showing enlargements in your heart by now, and they will progress. You don't want them to get bad, as they can become permanent.

Sorry if that's blunt. I don't mean it to be. That's how I see it, though.

Best wishes,
 
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