New Kid on the block

[Jims]

Hello everyone. I have been visiting this wonderful forum for about 2 weeks now. You have all been a big help to me just by being here.

I am scheduled to go in for AVR on Sept 15, 2004 at Sutter Memorial Hospital (Dr. Ingram) in Sacramento, CA. I don?t fell really scared yet, but the really stupid dreams have begun, and the waking up at 4 AM and not able fall back to sleep.

I had a lot of questions, but searching through your archive has helped me answer many of them or at least feel less fearful about them. There still are many questions! But, first maybe I should give you some background.

I am 57 years old. I was informed about my heart murmur in 1992 when I went in for something else. Naturally, I didn?t believe it and never had it checked until I started getting ?palpitations? in 1994. Things slowly progressed and now I am fully aware that my bicuspid aortic valve needs to be replaced or it will kill me.

The valve is heavily calcified (looks really bright on an echo). Probably bicuspid. The resting gradient is 45 mm. Under stress, it goes up to 100 mm. The ultrasound calculated valve area is 0.9 sq cm. The EF is still pretty good, 55% measured by echo, 60% measured during the cath. Peak aortic flow, I think, is 4.5 m/s. The LV is not significantly enlarged. The wall is slightly thickened. But, so far no emergency signs. Coronary arteries are still in good shape.

Boy, I really don?t want to do this operation. But, the many stories about your wonderful recoveries and some stories about being stronger than ever, have really encouraged, and inspired me.

So, here are some questions I am wrestling with now.

1. What kind of valve? Is this operation so painful and excruciating that I will terribly regret making a tissue valve choice.

2. Could I bare the constant ticking of a mechanical valve?

3. If the mortality rate of the a second surgery is roughly the same as 15 years of Coumadin and its associated risks, is it really a toss up between mechanical and tissue?

4. Many sites (ACC guidelines) say that after onset of symptoms survival rate is 2-3 years. Now that?s scary. Does this mean if AVR is not do, or even if it is? The symptoms that I have had are, shortness of breath (I used to really love mountain biking). A 2nd degree AV block which the doctors have blamed on the calcified valve impinging on the bundle of His. So far, I have had no chest pain, fainting or dizziness. Is it really 2-3 years?

5. Is there a way to check the 30 day survival rate of AVR operation of a given hospital?

I have scheduled a meeting with my surgeon (who I really trust) on Sept 9th to discuss my valve options. But, he has made is clear that no matter what we decide upon before surgery, what really decides it, is what he finds when he opens me up.

I know many of these questions have been asked in the past, but I would really appreciate your answers.

Thanks,

Jim

 

[Bryan B]

Welcome to the forum Jim. We have quite a few bicuspid valvers here that I'm sure will introduce themselves. My problems were a bit different but resulted in the same need, an AVR.

As far as valve choice it really is a personal decision, and like your surgeon said somewhat limited by what he finds when he gets in there. I chose to have a Ross Procedure because I felt that was what was right for me (I'm 43), and fortunately once my surgeon got in there he felt I was a perfect candidate for the procedure. My "backup plan" was a bovine pericardial valve. There are pros and cons with all options, but the bottom line is that which ever one you choose will be the one that prolongs your life. The valve selection forum has some great threads discussing the pros and cons of each type of valve. I suggest you read them all thoroughly as just about every aspect of what bothers people and what doesn't bother people about each valve are covered. I would grab some links for you but I'm too lazy right now.

As for the 2-3 year survival rate that you mentioned, I'm not sure where you got that. But I imagine it is somehow connected to how long you may survive if you don't have the diseased valve replaced.

Good luck with your upcoming surgery and don't hesitate to ask questions, vent, or just chat with those that understand what you are going through before AND after your surgery.

Here's some links Jim:

Hospital Rankings

http://www.usnews.com/usnews/health/hosptl/rankings/specihqcard.htm

Discussion on Valves (which you can also find in Valve Selection forum)

http://valvereplacement.com/forums/showthread.php?t=6585

http://valvereplacement.com/forums/showthread.php?t=7339

 

[Phyllis]

Welcome Jim,
The two-three year survival rate is definitely in reference to after symptoms set in and before the valve is replaced. Dick was even warned that there was a chance (although slight) of sudden death.
Choice of valve is a personal one and also may be changed by the surgeon during the AVR. Dick, at age 70 had an Edwards Magna bovine valve by minimally invasive surgery at Brigham and Women's in Boston. They claim it should be good for 20 years.
You should be able to go to the hospital website and check their survival rates. Also you can ask your surgeon that question.
Best of luck and don't be afraid to ask any questions - you will find lots of help here.

 

[Jims]

2-3 survival

2-3 survival

Bryan,

Thanks for the advice and wishes.

I got the 2-3 years from one of many great posts on thsi forum:
http://www.acc.org/clinical/guidelines/valvular/3205p149.pdf
on page 1499 near bottom right side under "Natural History"

this document is the "ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease"

Also thanks for the pointers to hospitals rankings and valve discussions.

Jim

 

[Marguerite53]

Welcome!

Welcome!

Hello and welcome to this wonderful site. I am still in waiting mode, but I sense that my time may be coming up pretty soon. I will be very interested to hear how your meeting goes with the surgeon. Please keep posting! There are so many here who have been through this and can help guide your thinking.

Best of luck to you!!

Marguerite

 

[Jims]

Edwards Magna bovine valve

Edwards Magna bovine valve

Phyllis,

Thanks for the mentioning the Edwards Magna bovine valve. I had seen it mentioned and went and looked it up. I will definitely mention it to my cardiologist.

Jim

 

[tobagotwo]

Jim,

Here are my opinionated responses to your questions...

1. What kind of valve? Is this operation so painful and excruciating that I will terribly regret making a tissue valve choice.

That is an individual decision. I chose a porcine xenograft, knowing it means eventual resurgery. I have had the surgery, and I am fine with knowing it will happen again. Until then, I am basically free. It just wasn't all that bad for me. I am far more scared of cancer than valve resurgery (not that I won't be a sissy about it when it comes around again). However, there are others here who felt it was such an ordeal that they would do anything to avoid it, and chose accordingly. The problem is, you don't find out how it will be for you personally until after the surgery...


2. Could I bear the constant ticking of a mechanical valve?

People who get mechanical valves take varying times to get used to it. Most adjust by the time they are ready to go back to work. A very few say it still drives them crazy after a year. Some come to find it comforting. In the case of a replaced valve, the ticking has to be considered better than the alternative: complete silence.


3. If the mortality rate of the a second surgery is roughly the same as 15 years of Coumadin and its associated risks, is it really a toss up between mechanical and tissue?

Short answer, with no qualifications: Yes. Medium answer: It depends on your general health, whether you are likely to need another surgery anyway, and whether the new heterograft valves last over twenty years, as the manufacturers are hoping. The long answer would depend entirely on who you are talking to. My view is that Ross Procedure is tops, if possible (a little late for you and me - they usually like 'em younger); biological valve is second, and mechanical is third. Nancy and Betty will tell you (very nicely) that I am full of beans.


4. Many sites (ACC guidelines) say that after onset of symptoms survival rate is 2-3 years. Now that?s scary. Does this mean if AVR is not do, or even if it is? The symptoms that I have had are, shortness of breath (I used to really love mountain biking). A 2nd degree AV block which the doctors have blamed on the calcified valve impinging on the bundle of His. So far, I have had no chest pain, fainting or dizziness. Is it really 2-3 years?

That does, indeed, refer to untreated aortic stenosis. All things being equal, your life goes roughly back to its normal, karmic endpoint when you have completed successful surgery, if you have no permanent gross heart damage and you hedge a percent or two.


5. Is there a way to check the 30 day survival rate of AVR operation of a given hospital?

While the hospital is important, your surgeon, his stats, and his level of experience are even more important.


You have very high pressure gradients, if they're accurate. I assume you're going in very soon. With high calcification, the valve is usually worse than the echo specs might indicate, and you're under a cmsquared at any rate.

Your surgeon may be saying that he will be looking to see the status of the surrounding tissue before he makes a decision, such as whether you need an aortic graft, whether the root tisue is in good shape, etc. However, he should be able to tell you what criteria would cause him to decide to override your game plan. If he can't, you might want to think again about him. I wouldn't want that level of a decision about my life to be made on the surgeon's whim that day. Other excellent surgeons do make commitments, with some explained caveats. He can and should give you a straight answer.

Best wishes,

 

[Jims]

the new heterograft valves

the new heterograft valves

Hi Bob,

Thanks for responding to my post.

You made many great observations. I am really curious about the valve type you referred to "the new heterograft valves ". A 20 year valve would be great! Do know any mfg'r or the valve trade names.

Ross procedure is probably out for me too.

I can't agree with you more about the surgeon being more improtant than the hostpital. I tried calling the Society of Cardio-Thorasic Surgeons, but they don't give out stats. Do you know how to get stats on a Dr.?

My surgeon is very experienced and very open and a great communicator. I will definitely ask him about the things which would drive his choice away from the valve which we decide upon.

As for the gradient, I have had 6 cardiologists so far, I have had 5 stress echo's and I do trust the the values, as a result I am going in Sept. 15th.

Thanks for your advice.
Jim

 

[bvdr]

Welcome to the family, Jims. I'm glad you have been getting yourself familiar with the site and finding helpful information.

Your questions are good ones. Valve choice is so personal and the choices are all so good that deciding on which one can be difficult. I don't know why but I didn't stress over that at all. I talked to my surgeon and asked what he thought would be a good choice for me and he recommended the St. Jude Mechanical. My PCP also had recommended the same so I just went with that and am content with my choice.

It is major surgery and not a pleasant thing to go through. I felt so bad before surgery though that I actually looked forward to getting it done and having the opportunity to get on with my life. When I think of the unpleasantness though it is more of the generalities connected with it such as weakness, shortness of breath, and all the needlesticks and hospital tests rather than the surgery being so painful. I just didn't find it so. I would encourage you to let your surgical team, including your anesthesiologist, know of any joint or muscle problems you have and request they take extra care in positioning and padding you during surgery.

The ticking of my valve does not bother me. I too was concerned about that since I am very noise sensitive. There was a web site where you could listen to the ticking of various valve models and I liked the sound of the carbomedics and the St.Jude mechanicals the best.

You've probably heard the mantra before that just because you have a mechanical doesn't mean you won't have another surgery in the future and just because you have a biological doesn't mean you won't end up taking coumadin anyway. It is a true statement. Bob leans one way and I lean the other in preferences but it doesn't make either of us wrong or right. (So I don't really think he is full of beans...I know he gives thoughtful consideration before becoming opinionated ).There are just so many good choices and heartwise, we are so fortunate to be living in a time like.

I don't have much to add about the answers others have given you on the other questions you posed. It seems like you are ready for the surgery and it delights me to see how educated you have already become about it. I hope you are keeping a folder with copies of all your tests too.

 

[KathyH]

Welcome to VR.com. This is a great place to get information and to talk to members with the same problem. You have already gotten alot of good information. As Betty said valve choice is personal and there is no right or wrong answer, you will have to live with your choice. I went to one of the best cardiac surgeons in the country and asked him what type of valve he would suggest in my case- 51 year old diabetic- it was the St Jude. I hear it clicking when it beats fast or when it is quiet in a small room. My husband and my daugher have heard it clicking but no one else has noticed it. I found that the surgery was not as bad as I expected, but I do believe that knowing what to expect, having a positive attitude, having alot of support and of course prayers, made all the difference in the world. Good Luck with your upcoming surgery.
Kathy H

 

[ALCapshaw2]

Welcome to our world Jim !

With your pressure gradients, I would not want to wait any longer than was necessary to have the valve replaced. I am a firm believer in 'sooner rather than later' when it comes to valve replacement to prevent further damage to your heart muscles and walls which can be PERMANENT if you wait too long. (Too Long = permanent enlargement and / or thickening)

I was close to your age when I had my AVR and I requested a Carpentier-Edwards Bovine Pericardial Valve. Unfortunately, radiation damage effects precluded that choice and I ended up with a St. Jude Mechanical Valve. I rarely hear it and living with Coumadin has not caused me much concern other than being a major inconvenience if you need other surgery and / or invasive procedures.

You can find Hospital Data by Procedure and Location at www.HealthGrades.com This is a FREE service.

There is a website for Doctor information but it has a fee for service. (www.BestDoctors.com or something like that)

Keep looking / reading the VR.com forums, especially the Pre-surgery, Post-surgery, and Valve Selection Forums. Feel free to ask any and all questions as they arise. The Reference Section has more than enough links to keep you busy reading before and after your surgery!

Best wishes,

'AL'

 

[Glenda]

Welcome Jim

Welcome Jim

Hi Jim, welcome to our forum. You will learn loads of information from all these wonderful people that have "been there, done that." I had a AVR on June 2, 2004. (pig's valve) The reasons: I'm 61, overweight, have diabetes and CML (chronic myeloid leukemia.) I have had breast cancer and kidney cancer within the last four years. My risks were just too high for the mechanical valve or the Ross procedure. With the mechanical valve I would have to be on Coumadin and I take Gleevec for my CML and I was told by my oncologist that the two medicine's just wouldn't mix. Also, with the Gleevec I have at least 12-15 years, the same as with the pig's valve. So one or the other will get me in time. But without the operation I sincerely don't think I would be here today. I was failing fast and had been for over a year. I was getting where I couldn't walk across a room, I was so short of breath. I had passed out several times the week before the surgery. I couldn't play with my grandchildren the way I used to. I was having extreme pain in my chest. Now I can walk up a flight of stairs, play with the grandchildren, walk over five miles with no problem at all. IT WAS ALL WORTH IT.

The surgeon said when he attached my valve that it started working immediately. He says it usually takes a few minutes for the new valve to pick up the beat, but not with mine. His exact words were "You have a very happy heart."

I'm sorry I didn't mean to write a book. I would recommend this surgery, no I don't want to have it again, but if it is necessary, I will. I also knew whatever the outcome I would win.

 

[tobagotwo]

Unless the hospital or the surgeon will part with the statistics, I do not know of a way to find out. Perhaps someone else here has figured an angle.

Some hospitals (and surgeons) will out their stats at the drop of a hat. That's usually a good sign. The top performing hospitals have worked to stay there. Cleveland Clinic Foundation is always first. The next twenty or so seem to swap around, but the names are familiar. Brigham and Women's and Mass General are usually there, and some Texas heart centers, Mayo, etc.

I swore I was going to CCF for this, but when I met my surgeon, I realized I had read about him four years before, as a rising star in the field. He said if he did the operation, there was a 99% chance I'd walk out of there. I have to admit, I liked the sound of that. So I had it done in New Brunswick, NJ. And it went great. Go figure.

Here are some more posts & threads regarding valve selection. In one of the threads there is a mention of another thread by Peter Easton which is highly thought of. You could find that through search:

http://www.valvereplacement.com/forums/showthread.php?p=77609#post77609post77609

http://www.valvereplacement.com/forums/showthread.php?p=77756&highlight=manufactured#post77756

http://www.valvereplacement.com/forums/showthread.php?t=7262&page=1&pp=30

http://www.valvereplacement.com/forums/showthread.php?p=82279#post82279post82279

Best wishes,

 

[Susan BAV]

Hi Jim -

I'm a little more unusual because I am a female bicuspid, although there are several other female bicuspids on this site. I'm 42 years old. I got my new valve about eleven months ago. I can hardly believe how much better I feel; I didn't completely realize how ill I had become pre-op.

I really did not want to be on Coumadin so I wanted a tissue valve. There is no guarantee, however, that you will not have to take Coumadin even with a tissue valve. I had a strong bout with a-fib a week after my surgery and was on Coumadin and some other strong medication for three months. Fortunately, the a-fib is gone and I only take a baby aspirin once daily now. I have a paternal uncle, however, who has been in a-fib for the past twenty years (he's 70 now) and has been on Coumadin all of that time. He has had surgery on both his aortic (not bicuspid) and mitral valves but they were repaired, not replaced. You probably know that bicuspids cannot be repaired; they must be replaced (only when necessary, of course).

I read enough about the Edwards bovine valve that I decided that would work for me. I consulted with three highly recommended surgeons, all of which my husband and I liked. I read some good advice on this site: Find a great surgeon that you trust and go with the valve he recommends. So I chose a terrific surgeon --well-respected and highly-recommended-- and I told him I thought I might want the bovine valve and I told him that I didn't want to be on Coumadin and I asked him what valve he would recommend. He recommended the porcine valve that I have. There are at least a few members on this forum who have this valve. So far so good ; I have no complaints!

Have you had a chance to read any of the members' stories? They are also helpful. I'm so glad you found this site before your surgery! Best wishes!

 

[Jims]

Thank you all so much! The advice I got, so far, and all the great links have been very appreciated.

Susan, I have read all of the stories on men with AVR (not that I don't like the women's stories LOL . They were very interesting and some of the Websites that people made about their surgery and recovery were very useful (and fun to read).

I think I'll go rent a recliner today!

Glenda, anyone can see from your postings that "You have a very happy heart." I am sorry to hear of all the problems that you have had to face and I am happy that your heart surgery has made you feel so much better.

Al, I just wanted to say that I am in no way tentative about this surgery. I will have it done on Sept 15th. But , this new found courage is, in large part, due to the many positive stories that I read on this web site. You "guys" are great!

Jim

 

[ticktock]

Jims
First off good luck with your decision and subsequent surgery. I'm sure you will do great. A subject not mentioned here, and I read them all, is the problem of complications with repeated surgeries. I am 49, and have had 4. I was VERY lucky until #4.... and still consider myself LUCKY cause I'm here to write to you.

It isn't "just" bearing another surgery, the pain, the fear, the anticipation, etc. It is that with repeated surgeries come greater and greater risk of a problem. Sure, we can suck it up and gut out another surgery, but will "the force be with us" is the question. Do not fail to take the above under consideration before making your final decision.

One surgery is awful to think about, then you have to consider a second somewhere down the line. If by terrible chance you have a problem and need a third..... your putting yourself at a much greater risk of complication. I have 2 mechanical valves, can you tell?? St Jude and a Bjork Shiley, aortic. I believe in them and have been on Coumadin since 1978.

There are grand arguments for both types of valves, and all are valid. Just a personal preference I suppose. You are obviously doing your homework and I have no doubt you will make the right decision for you!

 

[Susan BAV]

I have read all of the stories on men with AVR (not that I don't like the women's stories LOL .

That's what I did too, but opposite; I mostly concentrated on reading the stories of the women who needed their aortic valves replaced and I was very surprised how many circumstances mirrored my own. It seemed to me also, as I read them, that women and men seemed to have different complaints of symptoms and onset of their valves beginning to fail. I haven't yet decided if that's mostly from lifestyle, activities and such, perception, or what.