Very Confuseion. Open to opinions and suggestions

[heartweave]

It has been awhile since I have written. Since then I have gotten a variety of second and third opinions, some of which contradict each other. Perhaps someone could shed light on this.
First surgeon Dr. Gaudiani….wanted to do surgery this month. My ejection is 60 but my stenosis is 0.7. He recommended biological valve. I am 58. He said don’t travel out of the country.

Second Surgeon. Dr. Craig Miller, Stanford… Redid the echo. He wondered why they hadn’t done a pulmonary function or BNP blood tests. He said the stenosis is at 0.9. He wants me on a daily beta blocker He said I do not need surgery yet. He thought probably not for a year or two. He said the fact I can exercise regularly means I am not ready for surgery. He said absolutely he would NOT consider a bio valve on someone my age. What they learned is the fail is 5-10 years. He felt I should only consider a mechanical valve and Coumadin is not that big a deal. He said I can always find someone who will say I need surgery now but….He said go have fun, enjoy life, no restrictions on traveling out of the country. Valve was leaking a bit.

Cardiologist- don’t listen to the surgeons. He is the one who sees me and decides when I need surgery. He feels the extreme fatigue is not from my heart. He said the main criteria is shortness of breath. He didn’t think I should be on a beta blocker even though I am having palpitations. He told me to look at the top hat mechanical valve that may not need Coumadin. He also said the fact that I had left sided radiation for breast cancer, it will be a mess if they have to do surgery more than once.

My primary physician told me not to consider Coumadin as it is a death sentence and it will shorten your life.
Meanwhile….I am very tired. I push myself to dance for 45 minutes to an hour but I am exhausted after. I am finding I need to take naps during the day and start falling asleep by 8pm.

I have not even done any research on the mechanical valves. I am so confused. Should I consider talking to another cardiologist. Should I just wait and keep on going back to my cardiologist. I guess I need to consider a mechanical valve .


Leah
58 year old ( on Monday), EF 60-65%, Stenosis 0.7 ot 0.9

 

[AZ Don]

The problem with 2nd, 3rd, etc opinions is that often they disagree to some extent. I saw a number of Dr's for knee problems and I realized that if you see enough Dr's you can hear just about whatever you want to hear. I am a little surprised to hear a cardiologist say that he decides when you are ready for surgery, and not the surgeon. Seems to me the surgeon is more of the specialist in this area.

Choice of valve can be (and has been) debated endlessly. You have to decide which you would rather live with: repeat surgery or blood thinners. Most live with either one fine, some have issues. Here is an article on the AHA web site that may be helpful: http://circ.ahajournals.org/content/117/2/253.full. See especially the figure containing a decision tree. Also, there is a good example using a 50 year old man with a 30 year life expectancy, and determining the risks with either choice, tissue or mechanical valve. The net is that in this example the risk of death is slightly higher with the tissue valve and the risk of illness is much higher with the mechanical valve.

I've never had symptoms from my BAV but I have read repeatedly on this forum that people often feel much better after surgery, didn't realize how easily they tired before surgery, and wished they had done their surgery sooner. If it were me I would try to find an explanation for the fatigue. If it couldn't be explained I would assume it is symptoms related to the heart and plan for surgery. It is something you will need anyways and it seems it may be interfering with implementing the advise from the 2nd Dr - to go out and enjoy your life.

My 2 cents. Good luck.

 

[dick0236]

My primary physician told me not to consider Coumadin as it is a death sentence and it will shorten your life.

Your primary physician comment would be funny if it where not such an irresponsible statement....."death sentence"??..."shorten your life"??? Warfarin(Coumadin) is one of the most widely prescribed drugs worldwide and its population of patients is mostly elderly and on the drug for a multitude of reasons other than artificial valves. Doctors have told me over the years that the problems are not warfarin driven but are due to the non-compliance and poor habits of the patient. It does require that you take the "pill" as prescribed, test routinely and follow a few simple rules......and if you can't, or don't want to follow a simple regimen, don't go on warfarin.

PS, I've had a couple of primary docs like yours over the years.....and my personal opinion is that they have NO idea about proper warfarin management.....and had slept thru their medical school lecture on "anti-coagulation therapy". One of my recent x-docs had a specialty in Sports Medicine and I guarantee that this guy couldn't even spell
warfarin or Coumadin.

 

[big_L]

Dick is spot on. A lot of doctors just do not understand warfarin treatment. Lots have been on it for decades with minimal issues.

Sounds to me like you are a better candidate for a mechanical valve. "Top hat" valve and no warfarin - wow that's a new one on me. Maybe you can get by at a lower INR.

The valve choice is a personal decision. Do some research. Sleep on it. You'll know in your gut which way you want to go. Then tell the Drs and stick to your guns.

You have two echos with valve areas of 0.9 and 0.7. Less than 1.0 puts you in the severe category. You have some time, but you need to start getting ready for surgery. It would help if you'd look at your mean gradient numbers from the echo (you can ask for the report). Gradients above 40 are a second indication that you're needing surgery. There is some risk in waiting. Some numbers say 1% risk of sudden cardiac death per month when you reach severe. Not trying to scare you, but you likely cannot put this off too long.

I was surprisingly short of breath before surgery with activities like dancing. I didn't realize until after surgery how bad it was until I had surgery.

Finally - you're in the scary stage of this. For me, the months just after being told I needed surgery were awful. It will get better. You'll get through this, we all did. Hang in there.

 

[epstns]

Leah, I would be confused, too. The statement I don't understand is that where Dr. Miller said something like (paraphrased) "tissue valves begin to fail in 5-10 years." I wonder if you mis-understood him. I would have expected him to be better informed on that matter. Yes, there are some tissue valves that begin to fail at 5-10 years, but the study I read about showed that some high percentage (85%?) were free from explantation at 15 years, or something like that. In patients much younger than you, yes the tissue valves do fail sooner. As we age, our bodies do not attack the tissue as aggressively, and tissue valves sometimes last well beyond the 10-15 year span.

It might well be worth some time digging into the web site at Cleveland Clinic regarding valve life expectancy, as they seem to be the top spot for valve surgeries.

 

[pellicle]

Hi Leah

It has been awhile

welcome back

My primary physician told me not to consider Coumadin as it is a death sentence and it will shorten your life.

I'll agree with all the others here and suggest that perhaps you saw the physician whom the MASH character of Frank Burns was modeled on. Being born is a death sentence ...

I can only shake my head at the incredible lack of knowledge that exists in the medical community about Warfarin. Still if Philip Morris can find MD's to testify that Tobacco does not cause cancer at all then why not what you just heard come out of an MD's mouth.

To be honest being on Warfarin is not something I'd suggest for a perfectly healthy adult ... but then neither is heart surgery. My point is that with the need to have surgery comes issues, noone is cured.

The issues can be managed. Management is something that is important. Sadly the USA seems to have a philosophy of precluding the best management practices of Warfarin care: NB they in general do not support Patient Self Testing. This has been shown throughout the world to yeild a better result for the patient.

I know of a patient who has been on Warfarin for more than 53 years ... please note: he is not 53 years old (hes much older) he's been on Warfarin for that 53 years.

Essentially Warfarin is like any other drug, if its well managed then its safe. Sleeping pills kill more people than Warfarin.

I read recently that of the 33million prescriptions filled for Warfarin in the US something like 72 deaths were reported. Pradaxa on the other hand had less than 1/10th of the prescriptions filled but 542 deaths reported. Yet Pradaxa is hailed as the wonder drug to get you onto something safer than Warfarin. This information is a non issue however because as a heart valve patient Pradaxa has not been approved. Not because they didn't try ... but because they trialed it and too many people died (so they stopped the trial).

I believe that if you look at things from the money perspective you get the best idea. For example - the tobacco industry. Did they have something to gain from standing firmly that smoking does not cause cancer?

Looking at anticoagulation the yearly cost of being on Pradaxa is something like $3000 per year. The yearly cost of being on Warfarin is something like 1/10th of that. Which drug will make more money for them?

Meanwhile….I am very tired. I push myself to dance for 45 minutes to an hour but I am exhausted after. I am finding I need to take naps during the day and start falling asleep by 8pm.

Well this is perhaps what some would call 'aging' ... but then I don't know much about you. Personally I'm not as strong and fit at 50 as I was at 35.

have not even done any research on the mechanical valves. I am so confused. Should I consider talking to another cardiologist. Should I just wait and keep on going back to my cardiologist. I guess I need to consider a mechanical valve .

Well I suggest you do. The surgical guidelines suggest "well informed patient" on both sides of the decision coin (tissue vs mechanical valve decision coin). I have put together an analysis of the Aortic Valve and Ascending Aorta Guidelines on my blog (here). I recommend the root document too but its quite tough going, but at the very least you can verify my interpretations or make your own.

Anyway, two figures from the decision tables for surgery from Aortic Valve and Ascending Aorta Guidelines:

according to point 1 "informed patient"
point 3 shows that you are very close to the 'cut off' for being more seriously benefited from a mechanical valve

again according to point 1 "informed patient"

Anyway, read up and ask questions, but bear in mind its an A class problem - meaning that either choice has benefits.

I wish you well in your process of gathering information and finding out what you need to know to help you make your decision.

Best Wishes

 

[Lynlw]

It has been awhile since I have written. Since then I have gotten a variety of second and third opinions, some of which contradict each other. Perhaps someone could shed light on this.
First surgeon Dr. Gaudiani….wanted to do surgery this month. My ejection is 60 but my stenosis is 0.7. He recommended biological valve. I am 58. He said don’t travel out of the country.

Second Surgeon. Dr. Craig Miller, Stanford… Redid the echo. He wondered why they hadn’t done a pulmonary function or BNP blood tests. He said the stenosis is at 0.9. He wants me on a daily beta blocker He said I do not need surgery yet. He thought probably not for a year or two. He said the fact I can exercise regularly means I am not ready for surgery. He said absolutely he would NOT consider a bio valve on someone my age. What they learned is the fail is 5-10 years. He felt I should only consider a mechanical valve and Coumadin is not that big a deal. He said I can always find someone who will say I need surgery now but….He said go have fun, enjoy life, no restrictions on traveling out of the country. Valve was leaking a bit.

Cardiologist- don’t listen to the surgeons. He is the one who sees me and decides when I need surgery. He feels the extreme fatigue is not from my heart. He said the main criteria is shortness of breath. He didn’t think I should be on a beta blocker even though I am having palpitations. He told me to look at the top hat mechanical valve that may not need Coumadin. He also said the fact that I had left sided radiation for breast cancer, it will be a mess if they have to do surgery more than once.

My primary physician told me not to consider Coumadin as it is a death sentence and it will shorten your life.
Meanwhile….I am very tired. I push myself to dance for 45 minutes to an hour but I am exhausted after. I am finding I need to take naps during the day and start falling asleep by 8pm.

I have not even done any research on the mechanical valves. I am so confused. Should I consider talking to another cardiologist. Should I just wait and keep on going back to my cardiologist. I guess I need to consider a mechanical valve .


Leah
58 year old ( on Monday), EF 60-65%, Stenosis 0.7 ot 0.9

Honestly from your experience and what your different doctors have told you I dont blame you for being confused. Since almost every doctors said things I've never heard before, or havent heard for quite a while. Most doctors in this day and age, would rec tissue valve for a patient almost 60, since almost if not every study on valves used today would show tissue valves in a person almost 60 would have a very good chance of lasting 15 or more years. Also I have NEVER heard the top hat valve, would not need Coumadin, or other anticoagulant or they would probably be used in many any more people. I have never heard another doctor tell a patient that Coumadin is a deathh sentance, again if that were the case I doubt they would have so any people on it.. Granted there ARE increase risks of bleeds, but only about 1-3% chance each year of having a major or life threatening bleed
Also since you are post breast cancer My guess would be IF you chose tissue valve now, when it need replaced, since you are higher risk you probably would have an even better chance of having that tissue valve relaced by cath, since they are doing them already now.

I agree wih AZDon about that article being helpful

Choice of valve can be (and has been) debated endlessly. You have to decide which you would rather live with: repeat surgery or blood thinners. Most live with either one fine, some have issues. Here is an article on the AHA web site that may be helpful: http://circ.ahajournals.org/content/117/2/253.full. See especially the figure containing a decision tree. Also, there is a good example using a 50 year old man with a 30 year life expectancy, and determining the risks with either choice, tissue or mechanical valve. The net is that in this example the risk of death is slightly higher with the tissue valve and the risk of illness is much higher with the mechanical valve

But wanted to point out the risks of "Illness" that is increased with mech valves in those studies is strokes that survived, either caused by clots or bleeds

I I would ask your doctors if he doesnt think it is your heart causing you to be tired, then what does he think its causing it and what would he suggest to help you.

I know probably the last thing you want, is another opinion, but at this point, since your valve is less than 1 and you are tired, you might want to contact Cleveland since they will give opinions based on your records without travelling there. now they will most likely recommend tissue, but It might make your feel better to know if they would or wouldnt recommend surgery now or if you should be on any meds. http://my.clevelandclinic.org/patients-visitors/international/second-opinions.aspx

 

[mainframe]

Dr Miller replaced my failed tissue valve after 7 years. He replaced it with a Top Hat valve and at no time did he suggest that I would be Coumadin free. Terrific surgeon by the way.

Chris

 

[Mentu]

Hi, Leah, listen to Dick. He has used Coumadin since before my heart surgeon was born. Also, as Chris says, your valve is seriously stenotic and will not improve. The problem with waiting is that the heart must compensate to force blood through that very small oriface. Consider that a normal aortic valve should open to the area of a quarter. Your's is close to the area of a dime. To compensate, the wall of the left ventricle thickens. The longer this goes on, the ventricle wall will also begin to stiffen and this can reduce the effectiveness of valve replacement. I speak from experience, Leah. The problem is called diastolic dysfunction - after valve replacement, the heart can once again move blood through the aortic vale with ease, however, on the diastolic beat when the heart relaxes and the ventricle fills with blood there is a problem. The thickened stiffened ventricle wall cannot fully relax so it does not allow the ventricle to fill completely and so reduces the amount of blood being moved. Fortunately, our hearts have an astonishing ability to heal. At four years after my valve was replaced, the diastolic dysfunction has been reduced and I was recently removed from the final drug I've been taking for it.

Finally, my Cardiologist didn't really want to recommend surgery until I began experiencing dizziness or even passing out which I never did. On the day I began having shooting pain across my chest he called to recommend a surgeon. I now think he did me a disservice by delaying as he did. I didn't really understand that Cardiologists often see valve replacement as a "last resort" even though they have no way to treat stenosis. If your valve is between 0.7 and 0.9 cm[SUP]2[/SUP] it is very serious and waiting can alter your prognosis for recovery. When you speak with your cardiologist, remember that he is an expert that you have hired; he or she works for you. You have every right to know why he is delaying the only thing that will help you.

Larry

 

[scott.eitman]

Wow, it sounds like a lot of differing opinions within your team. They should be talking to each other. I am a firm believer in working with a Cardio, not primary or surgeon. I further this with your cardio should be one who specializes in valves; yes their are cardios that have specializations, just like all other jobs out there. Not all people in a given profession are as good as the others.

Before my first surgery, I did not have SOB...or at least did not recognize it if I did. I was exhausted a lot. I do believe that this is a symptom because after surgery, that symptom went away.

 

[Heart Of The Sunrise]

I am coming up on my 1 year anniversary. Valve choice is very personal. I am unaware of anyone on this site who regrets their choice.
I am absolutely certain I made the right choice with the ON-X mechanical. Coumadin has not been a problem.
I only hear my valve in the wee hours of the night if I wake up early. I was more fearful of repeated re-operations. My mother just celebrated her 90th birthday!:thumbup:
I only got one opinion because DR. Bavaria is awesome! You will need the surgery, waiting only serves to risk permanent damage to your heart.

 

[cldlhd]

I am coming up on my 1 year anniversary. Valve choice is very personal. I am unaware of anyone on this site who regrets their choice.
I am absolutely certain I made the right choice with the ON-X mechanical. Coumadin has not been a problem.
I only hear my valve in the wee hours of the night if I wake up early. I was more fearful of repeated re-operations. My mother just celebrated her 90th birthday!:thumbup:
I only got one opinion because DR. Bavaria is awesome! You will need the surgery, waiting only serves to risk permanent damage to your heart.

Heart of the Sunrise, I'm a 45 yr old , with a 7 year old son, who was just diagnosed with a mildly leaking bicuspid valve with no apparent stenosis or calcification so I think that means it may be eligible for repair rather than replacement although as I'm pretty young I'm concerned about reoperation. I also have an ascending aneurysm which goes up to, but apparently doesn't include the arch. The root is 4.9 cm , ascending 4.8 and my first consult with a surgeon from Penn I was told I can wait and get an echo-which isn't good at measuring the aneurysm- in 6 months and a CT angio in a YEAR. I have a second opinion with another Penn surgeon- Dr. Bavaria-scheduled for May 20th. I'm not eager for surgery as I wish I could wait until they can grow you a tissue valve from your own bone marrow stem cells but thats probably close to a decade away. A little concerned about the coumadin as I have a physical job and do a lot of work around the house and the other scary things I read about endocaritis but if I go mechanical I was thinking about the On-x . Would love to hear your opinion of it, like how loud is it and also I'm a little afraid Dr. Bavaria won't contradict his colleague and was wondering if you think he would going by your interaction with him. Feel like my life is on hold-light duty at work, afraid to work on my long list of projects at home, and I'm praying that the aneurysm can be fixed and one day I can engage in physical activities without fear of death-do you ever feel back to normal? Did Dr. Bavaria give you any restrictions on things like maximum weight you can pick up once fully recovered? Would love to pick your brain one day, I live right down the road in Bucks County, Thanks , Chris

 

[Agian]

I'm not eager for surgery as I wish I could wait until they can grow you a tissue valve from your own bone marrow stem cells but thats probably close to a decade away.

Why, are stem cell valves in the pipeline? Are they working on this? That would be exciting news.