Questions

[Jim Boucher]

Three years ago I discovered I have bicuspid aorta and dilated root (52mm). I'm 51 and facing aortic valve and root replacement in two weeks. My cardiologist has told me all along that I'd need a mechanical valve. Now I find this forum and see that there are many choices and sometimes choices within the choices. Of course I need to decide tissue or mechanical but I'd like your input on the questions I have the opportunity to ask my doctor next Monday. What are the questions you wish you'd asked or the factors you wish you'd known about BEFORE you had surgery?

I appreciate this forum! Thanks,
Jim

 

[fyrfytr]

Hey Jim,
First I want to WELCOME you to this Great Family. I am glad you found us.
Be prepared for a wide range of answers. If I were you I would do a search on the forums and read up.
I was 52 when I had to have my surgery and didn't have time to do any research. But knowing now what I have been through if I did have a choice I would choose what I have without any question.
Again Welcime to this Great Place. ENJOY

 

[Jim Boucher]

Thanks, Dave.
I'm getting oriented to what is here. What a motherlode!
Were there 'things you wished you'd known' in your experience? ie - I read in one post where the patient had asked the surgeon NOT to use students in the surgery. The surgeon said he didn't have any. When surgery day came, the anesthesiologist introduced his student who was going to do some of the work.

 

[BackDoc]

Valve

Valve

I'm am fifty and in the waiting room. I just returned from the Cleveland Clinic Weston Florida this afternoon. I had a consult with my cardio there regarding my 6 month follow up test results. He told me in no uncertain words that the choice of valve should be left up to the patient, and that new research is showing that the newest generation of tissue valves are showing a possible 20 year lifespan. And in that time span the way things appear to be progressing surgical techology may advance to the point where a re-op does not carry as many risks. Of course no one can guarantee this to be the case.

Like you, when it is my time to be wheeled into the OR, I am going to need my acending aorta reinforced/repaired as well as my BAV.

Just do all of your homework, and seek out the 2nd and 3rd opinions. BTW: following a DVT a few years ago I spend 6 months on cumadin. I had no problems with it at all. So I am not anti-cumadin/ or henny penny the sky is falling in regards to it's use.

 

[Ross]

Jim your at an age where you could go either Mechanical or Tissue. I'm assuming your surgeon is choosing mechanical in the hopes to avert any additional future surgeries for you. In my opinion, that is the prudent thing to do. I'm for anything that is going to keep you off the table again. Neither choice has a guarantee, but mechanical is the best choice in this case. You do however, have a choice and could go with tissue. The newer valves may well last you the rest of your life, but you may also require a replacement earlier then anticipated and by then, you may not be the best surgical candidate in those advanced years. Mechanical would likely be a one time thing but requires life long anticoagulation. Please see Al Lodwicks site for information on Coumadin/Warfarin to dispell any myth or garbage your hearing about ACT. Tissue would likely get you on aspirin everyday, but there is a good chance of it needing replaced before the end of your life. I guess it boils down to how healthy you are in your 60's and 70's as to whether tissue would be a good choice. While statistically, you could have many reops, the reality is, this is an individual thing and should not be looked upon as something to be doing time and time again.

 

[Karlynn]

If you haven't yet, take a look at this thread, http://valvereplacement.com/forums/showthread.php?t=17116, it's a brief overview of warfarin (Coumadin) from those of us that have been on it for a while.

You are in a grey area as far as your age and valve choice. We have members younger than you that have chosen tissue, and members older than you that have chosen mechanical.

For me, having had my mechanical for a while now, at 51, I'd probably go mechanical again. At 58-60, it would be a hard choice, but I'd probably lean more to tissue.

One thing we've always said here is that the only bad choice is not getting the surgery. It's a life-saving surgery and your post-op life will be enriched in so many ways.

Best wishes.

 

[StretchL]

Hi, Jim

Hi, Jim

...and welcome to the VR.com family.

You'll find a wide variety of opinions here from people who've had the surgery and those of us who are awaiting same.

The Cleveland Clinic is consistently ranked as the best heart hospital in the country, and there's a lot of information on their web site. Here's one of their pages that will be a good introduction for you:

http://www.clevelandclinic.org/heartcenter/pub/history/future/valve.asp

Just a couple of thoughts from my POV:

I suspect that your surgeon might mention options to you that your cardiologist has not. These would include the brand/type of mechanical valve he might want to implant, and the option of putting in a bioprosthetic valve rather than a mechanical valve.

Another option for some people is the "Ross Procedure," where the surgeon removes the diseased aortic valve, replaces it with the patient's own pulmonary valve, and implants a human donor valve in the now vacant pulmonary position. There are a lot of variables with this surgery, including the original reason for the aortic valve disease, and whether or not the native pulmonary valve is itself healthy enough to do the work for which the aortic valve was originally designed. I've done a fair amount of research on the Ross, and it's generally not done for a patient over 45-50 years of age, max.

Many people on here have much more direct experience with valve replacement surgery than I, and speak from experience. I've been asymptomatic until recently, and will hopefully have surgery in mid-November. I've learned a great deal from those on here who have gone before me. I'm sure you'll find the same to be true for you.

 

[bvdr]

Jim, welcome!

Once you have made your choice between tissue/mechanical/Ross then
I can just think of a couple of things you may want to bring up. First, if you have any body part that gives you problems such as sciatica, shoulder pain, bum knee or what have you, then request him to make sure you were positioned carefully as to not cause any undo stress. The other thing that I did was ask the surgeon to keep me well sedated while on the vent.

We are glad to have you in our valve family and make yourself very at home. You might be spending a lot of time here for a while. We are a good sounding board.

 

[catwoman]

Jim:
I was your age when I had my MVR. Because my grandmothers were 95 & 99.6 years old when they died, I figured I might have a chance at living that long, so I went with a mechanical.
Things/factors I wish I had known pre-op? I kept trying to find people who had undergone valve surgery so I could get some tips, but couldn't find anyone. Baylor's volunteers whom I spoke with had had CABG, not valve surgery. I discovered this website 4 months or so post-op.
I haven't had any problems with warfarin. I home-test, adjust my own dosage. I don't avoid foods or activities, but then I've never bungee-jumped or parachuted or anything like that. I am more safety-conscious now, but everyone & anyone could benefit by doing that too.

 

[Kate]

Hi Jim,
Valve surgery is definitely an area where experience counts so what I'd recommend you ask the surgeon is how many surgeries like yours he does a year. Ideally, you want someone who is doing your surgery several times a week, if not every day.

I'm one of the younger people who has chosen a biological valve. For me, occasional major discomfort (from repeat surgeries) is preferable to the low-level but continuous stress of Coumadin. However, many people on this site have chosen the opposite and are very contented with their choice as well. I think it's largely based upon your particular personality. Read up and eventually you'll know what's right for you. In my opinion, this is the major valve choice you need to make. Once you have chosen mechanical or biological, the choice of specific valve is largely dependent upon what your surgeon is comfortable with - unless you really want to go On-X (which would be reasonable if going mechanical) and then you might want to shop around for a surgeon familiar with that model. Best of luck! Kate

 

[Karlynn]

unless you really want to go On-X (which would be reasonable if going mechanical) and then you might want to shop around for a surgeon familiar with that model. Best of luck! Kate

I should also specify that if I was going to go mechanical again, at this point, I'd really heavily look into the On-X as Kate mentioned because of the promise of less aggressive anticoagulation therapy (ACT). However, not all doctors are familiar with this now.

Also, with a Ross - you are going to want a Ross expert.

Listen to your "instinct", "leading of the Holy Spirit", whatever you choose to call it. You can't go wrong.

 

[davidfortune]

Jim,

Surgeon selection is of paramount importance. I personally believe this could be the most important decision you make. An average job cutting and sewing your heart valve could lead to subpar results. While that may be OK for the guy washing your car - not so for your heart surgeon. Get the best surgeon you can find or travel to. This is not a connect the dot thing or a popularity contest. The nicest guy doesn't win. If you have a top tier surgeon that happens to be a nice guy (great). If he is an a** but is as good as he thinks he is - so what - you are not going out drinking with him. He is cutting on your heart and my expectation for error on this is ZERO. I value my life a hell of a lot more than I value my relationship with my surgeon (mine happens to be a pretty nice guy but my eye surgeon wasn't - but he was the most analy perfectionist ever so I liked him anyway - as my eye surgeon not to watch the game with).

My understanding of current standards for the Ross indicate that many (I can't say most since I haven't seen enough data) surgeons would exclude you from candidacy due to the dliated ascending aorta and dilated root. There is growing evidence that BAV is often correlated (75% in one study) with Cystic Medial Degeneration. Translate as BAV is not just a disease of the valve itself, it often involves the connective tissue of the aorta. Often dilation of the aorta continues after valve replacement. Based on my reading - I believe Root stabilization should be included during your surgery.

Please discuss Cystic Medial Degeneration and surgical remedies with at least two well renown surgeons. I believe the number one cause of failure of the transplanted pulmonary valve in a Ross procedure and the most common reason for premature reop is to deal with a dilated or aneurismal aorta that was not addressed during valve replacement.

In very specific cases (with very specific surgeons) REPAIR of the aortic valve may be feasible. There should be VERY TIGHT selection criteria to determine: 1. Candidacy and 2. Success (i.e a PERFECT repair) - less than perfect equals failure for a repair.


I would ask (and did) specific questions regarding:

1. What is he doing to make a re-op easier (in case it is needed).
2. How long are his patients on perfusion? How long would he expect your perfusion time to be?
3. Repair - His criteria and experience. Don't even think about this if he doesn't have impeccable repair credentials (and that is hard to find but it is the operation of choice - when feasible at CC and other top hospitals).
4. Cystic Medial Degeneration and dilated root/aorta - how are we dealing with these?
5. 64 Slice CT Scan - I think you should have one (some studies/surgeons require them for 1.Any patient with dilated aorta/root or 2. All BAV patients (again this is often related to connective tissue issues and future dilation)
6. What about minimally invasive? What's his experience (relatively high learning curve here to - don't be part of his learning curve).
7. Don't be part of his learning curve whatever your surgery is. Let some other person suffer due to his inexperience - cold? Maybe - but absolutely true. Would you rather suffer to provide surgical experience for a future patient?
8. Fentanyl vs. Morphine - ask tobogatwo - supposedly avoids some of the side effects of morphine.

Good Luck

 

[OldManEmu]

Redo

Redo

Jim you are in the difficult age group if you go tissue you will require a redo if you have a normal life expectancy. I think a lot depends on life style, if you regularly participate in activities that carry a risk of concussion then tissue is the way to go other wise mechanical may be your best option. If you choose tissue it is important that your surgeon sets you up for a redo. I was 41 and chose a tissue valve when a Ross was cancelled and the surgeon indicated that the prime consideration was then making the redo as easy as possible.

 

[marky]

I can't possibly add any more to what has already been shared.. You will find much wisom on this site

I just wanted to say Welcome!

 

[lopearredlady]

Welcome, Jim,
You will be so thankful to have found this site. There are so many knowledgeable people that truly become family-we are a community of souls with a common "heart" bond. I had a Ross procedure in July performed by a surgeon who performs them frequently and goes to England to present information on "heart stitching". I agree with the others that the most important part of your valve choice needs to be the experience of your surgeon and being the right candidate for the procedure! The Ross has been an excellent choice for me thus far. The only problem I have had is keeping my blood pressure close to the 110 systolic my surgeon recommends.
But, my cardiologist is working on this through changes to my bp medication.
Otherwise, I am more active than before with tons of energy (too much, maybe).
Anyway, you will know what is the right decision for you and your circumstance. Read what those with mechanicals and tissue valves have to share on this site-they are wonderful! Make your decision and stay with it!
The best to you,
Terry

 

[lopearredlady]

Jim,
I forgot to tell you I am an active, and of course, young 52-the upper end of the Ross!
Terry