Hello again

[Rivet]

I originally posted about a year ago when I thought I was going to have surgery. But, then it turned out that I could wait a while.
Well, now it's time. (yippee! )

I am having my aortic valve replaced on Wed (3/8) at Albany Med. I was orginally planning on having a mechanical valve based on their longetivity (I am 35), but I am worried about being on coumadin.
I am no super athlete anything, but am active in hiking, mountain biking and downhill skiing.
I am starting to consider having a biological valve to avoid being on coumadin and all that entails (testing, risk of bleeding, etc.) since I am still relatively young. Even though it would entail another surgery in around 15 years. I would be 50 then, and would get a mechanical at that time most likely. The risk of surgery would still be fairly low at that time.
I know the general consensus seems to be mechanical valves based on their longetivity and avoiding multiple surgeries. Though, it seems that places like the Cleveland Clinic are moving towards biological for younger patients.

 

[tobagotwo]

There is no valve choice concensus here. You would be mistaken to think that there is. There is information and certainly opinion, some of it quite vehement. You wouldn't be the first to go with a tissue valve at an early age. Nor the only one to change your mind in either direction late in the game. Just be certain that you are fully aware of your path before taking it.

Generally speaking, the things you have discussed are not ruled out by Coumadin use. Much of that is overprotective myth. Your elevated risks from mountain biking and downhill skiing are largely based on massive internal injuries, particularly cranial. Not all that common, and they tend to be difficult for people not on Coumadin as well. Do you wear a helmet? You should, warfarin or not. There are other protective paddings sold to the general public for mountain biking as well. There is no tag on them saying, "just for warfarin users, who are too delicate to be doing this anyway."

As you've hit 35, you'll come to know in the next few years that you will no longer be able to "walk it off" like you used to anyway, when you get hurt. That will encourage you to take the more enjoyable and less painful trails more often as you age. It's actually quite liberating to no longer be ruled by your weekend testosterone levels.

I am in sympathy regarding the testing and the forced dependency on medical people, the waiting in lines at labs, and the concern about the rampant ignorance of medical people about how to properly treat patients who are on Coumadin. It was an easier choice for me, though. I was 52.

There are a lot of good arguments on the site, pro and con, regarding which valves are best at which points. What you must do is to gather up the good and bad arguments for either choice, and weigh them against yourself, your personality, your needs, and your convictions.

Your direction still sounds tentative at this point. Use this (very short) time to absorb what you can, and try to view what you learn as dispassionately as possible. Be as sure as you can that you are making decisions for the right reasons, and that you are not misdirecting yourself for reasons you are not acknowledging. Bring them out, and weigh them with yourself openly.

Your perception of personal freedom is valid to consider. Guaranteed multiple operations is valid to consider. Fifteen years is not guaranteed even for a bovine valve at your age: it depends largely on your internal chemistry (not your activity level). Whether you have any aneuristic tendencies is something to consider (you would have further ops for them, regardless of valve type). Concurrent medical conditions should be considered (is warfarin compatible with your other meds?).

It doesn't get easier or more obvious at this point. It gets harder. But when you're done, you'll feel confident in your decision, whatever it turns out to be. Ask questions, if we can help.

Best wishes,

 

[Marguerite53]

Ah, and there he is......I was just going to send you to the Reference tab in the forums to read "famous Tobagotwo writings....." but there you have him! Also, if you're really needing more discussion, you can do the Search button for Mech vs. Bio and get a list of threads,

I have a meeting on March 20th to decide just the same thing, but I'm 52. It may be a little easier. If on my heart cath, this tuesday, they find coronary artery disease, I will definitely go mechanical. If my arteries are clear, I'm going tissue. And then, I will have to live with my decision. It may not be the best decision, but it will be mine, alone. All along my gut has said tissue and I'm going with my gut. It doesn't get too scientific with me unless it has to!

Good luck with your decision. Don't let it get you down. You get to LIVE!! That's the main thing. Either lifestyle will work for you because the joy of waking up every morning will allow you to make the adjustment.

Wishing you well on your journey!

Marguerite

 

[BDMc]

Great Post Bob!

Great Post Bob!

I think Bob has covered the bases for you. Now you get to explore, and study to make up your mind! Best of luck to you whatever you choose. Brian

 

[geebee]

Has a Ross procedure been discussed/ruled out? If not, that might be something to research.
It sounds like you have done some preliminary homework; you just need to add to your database.
Coumadin is not the horror story that seems to still be told out there. Yes, it requires testing and carries some risks but, day to day, it is not a big deal to most of us.
Considering tissue now and a mechanical later seems to be a very common theme/choice recently. Since you are so young, you would not be very old when you had your second surgery. However, keep in mind that, because you are so young, you might not get 15 years from a tissue valve - but you might. Also, getting a mechanical is not a guarantee you will not need another OHS in your lifetime.
It is important to weigh all the choices and information and make a decision you are comfortable with and will not second guess. Then you can live life after OHS knowing you did your homework and the future holds promise whatever happens.
Good luck.

 

[Nancy]

Hi Rivet-

You're in my area of the country, actually, Joe goes to Alb. Med. for cardiology and pulmonary hyprtension.

I just want to wish you all good things as you approach your important day. Joe has been in the cardiac ICU a couple of times and also recently and in the past, on the post surgical cardiology floor. They are both run very, very well, so you will be well taken care of.

 

[Randy & Robyn]

There are also those of us on this site who decided to go mechanical now and, should it need replacing when we are much older, then go tissue. Anticoagulation treatment for mechanical valves has extremely low rates of adverse events in younger people, on the order of 0.3% thromboembolism and 0.3% bleeding incidents per year (and yes, I can provide references to those numbers). The older you get, the higher the risk becomes. Many people believe a mechanical valve will last, on average, 30 years (could be less or could be a lifetime; no guarantees). Then, at our age, we would be looking at replacement at 65. There will be advances in both surgical technique and tissue valve longevity by then. A tissue valve would then get us through another twenty or thirty years.

This is just another opinion to consider.

Randy

 

[Dennis S]

Cost

Cost

I mentioned this briefly in a different thread, but this may be a better place to bring it up. I haven?t yet seen anyone consider possible complications of paying for a second surgery. I had my Aorta valve replaced and aortic stem repaired on August 4th. The bill was over $100,000.00, but we have great insurance, and only paid $100.00 of the cost. BUT the premium for that great insurance is going through the roof. The two of us have gone from paying a total of $300.00 per month to a present premium of $1,000.00 per month.

We will probably be forced to downgrade our insurance. I don?t think ours is an isolated problem. As we have retired, our income stays about the same, but the cost of various medical procedures, and the insurance that covers them is going up faster than anyone anticipated at the time we retired. In addition, we keep hearing about the squeeze being put on governmental and other insurance options traditionally available to the elderly. Of necessity, this has become a special interest of mine. Anyone who cares to track down projections of future medical costs will find, in my humble opinion, a murky but dismal picture. This is especially true if the next 10 to 20 years involve a transition from employment to retirement. The conclusion I draw from this is that a choice which assumes a second surgery should cause a person to sit down and decide if they are comfortable projecting what that surgery will cost and what insurance coverage they will have 10 to 20 years down the road.

 

[geebee]

Dennis,
You bring up an excellent point. I work these days mainly to have insurance coverage and, even at that, pay almost $300/month just for single coverage. As I get older, the premiums will rise or the out of pocket will climb (or both). To say nothing of Medicare when the time comes. Who know what restrictions there will be at that point?

 

[Mary]

Yes,
I considered it Dennis.
I had double BC/BS with my replacement, so my portion of the bill was zero.
We had no ramifications with increased premiums.

Concerning Medicare, if you have to have valve replacement, I believe they will pay.
Since Medicare has been mentioned, do we know how they reimburse on home testing units and supplies? I believe Granbonny has written about it, but I'm not sure what she said.
I do know that Medicare's new policy on rent to own home oxygen therapy is for the birds!

 

[geebee]

Mary,
Currently Medicare does pay for home testing (I am sure there is a copay) but they require INR reporting to a service (I think QAS offers the service). I do not know what happens after you do the reporting but I guess they want to make sure you do the testing.

 

[Dennis S]

Mary:

Mary:

My specific concern is not the present, but 10 to 20 years in the future. Yes, if I needed a second surgery right now I could have it done with no out ?of ?pocket expense. When my $1,000.00/month premium breaks our financial bank and we switch to a cheaper policy, we will have less coverage. And I have little doubt that Medicare would probably pay for a valve replacement, right now. My whole point is that there is a great deal of evidence that the combination of increasing medical costs, a huge baby boom generation moving to senior status, and spiraling government debt (as well as our personal experience with rapidly rising premiums) which causes me to wonder what the insurance and government benefits picture will look like in 10 to 20 years. If you are getting ready to make a choice that requires a $100,000.00 medical bill 10 to 20 years from now, it seems prudent to me to research what the best minds are predicting concerning insurance and government benefits that far into the future. I have done this, and find substantial reason to believe that the days of getting these procedures with little or no out-of-pocket costs may very well be coming to an end. Obviously there will be many who see it differently. But the fact that these can be done without out-of-pocket costs right now does not settle the question as far as I am concerned.

 

[Nancy]

Dennis-

I can't remember anyone ever bringing up this aspect of valve selection. It sure is provocative and I agree, something to consider.

 

[Mary]

My specific concern is not the present, but 10 to 20 years in the future. Yes, if I needed a second surgery right now I could have it done with no out ?of ?pocket expense. When my $1,000.00/month premium breaks our financial bank and we switch to a cheaper policy, we will have less coverage. And I have little doubt that Medicare would probably pay for a valve replacement, right now. My whole point is that there is a great deal of evidence that the combination of increasing medical costs, a huge baby boom generation moving to senior status, and spiraling government debt (as well as our personal experience with rapidly rising premiums) which causes me to wonder what the insurance and government benefits picture will look like in 10 to 20 years. If you are getting ready to make a choice that requires a $100,000.00 medical bill 10 to 20 years from now, it seems prudent to me to research what the best minds are predicting concerning insurance and government benefits that far into the future. I have done this, and find substantial reason to believe that the days of getting these procedures with little or no out-of-pocket costs may very well be coming to an end. Obviously there will be many who see it differently. But the fact that these can be done without out-of-pocket costs right now does not settle the question as far as I am concerned.

As I said previously, before I had replacement, I did consider the concerns you have mentioned.

 

[RCB]

medicare and home testing

medicare and home testing

Mary,
Currently Medicare does pay for home testing (I am sure there is a copay) but they require INR reporting to a service (I think QAS offers the service). I do not know what happens after you do the reporting but I guess they want to make sure you do the testing.

With Medicare part B you pay about $29.00/month for the machine and supplies to test once a week. You are required to call once a week and enter
your SS# and INR. If you are out of range, you talk to a nurse and she ask
a few questions and faxs the information to your dr. The dr. decides dosage. Pretty simple.

 

[Georgia]

Rivet, best of luck on Wednesday. It'd sure be nice if you have someone post for you to let us know how you did. Otherwise, we'll be worrying.

Stay in touch - see you on the other side of the mountain.

 

[Rivet]

Thanks for the replies and words of encouragement.

I think I'm going to stick my initial decision and go with the mechanical valve.

I'll reply back as soon as I can after the surgery.

 

[geebee]

Happy you were able to decide and now you can focus on the surgery and recovery. Try to find peace with the fact that all you need to do is show up. Recovery will be easy if you keep in mind that you made it through surgery and are alive; it makes any pain or discomfort easier to get past.
Looking forward to hearing about your surgery and will be praying that all goes well.

 

[Praline]

Good luck on your surgery....

Good luck on your surgery....

You will be home recuperating before too long. I hope you have a boring uneventful recovery.

 

[Glenda]

Rivet, good luck to you and I'm sure you will make the right choice. Prayers are coming your way.