Seems there are no good choices at 34yo

[RCB]

Why the switch?

Why the switch?

I have had both porcine and now mechanical.

As the three above wax longingly for their tissue valves and lament at the problems of a mech., one wonders why if you thought tissue valves were the best, did you go with a mech. valve. with your re-op?

If I have another surgery when I'm over 65, I'll will go with tissue. By that time, it would extremely unlikily for me to out live the tissue valve.

If you had another surgery, would you switch back to a tissue valve?

Care to share your decision making with me?

 

[lynnebhunt]

Thanks for the replies and kind words already!

Pam, no I had no diagnosis of a heart murmur ever. Seems strange to me that I'd go 33 years without knowing it, but the doctors said it's not uncommon. Even when they knew it was there, it was difficult for them to hear (only after exhaling and holding my breath). Of course the echo and TEE's confirmed the bicuspid AV.

If I might ask, where did your husband get his procedure done and by whom? I live in the Denver area. Sounds like he has had a great experience thus far and that's what I'm looking to.

Great site, thanks!

Hi --

I'm Lynne. I live in the Denver area, too. Will you e-mail me at "[email protected]" if you find out anything about good surgeons in the Denver area? Who are YOU using?

Thanks

Lynne

 

[Toronto Guy]

As the three above wax longingly for their tissue valves and lament at the problems of a mech., one wonders why if you thought tissue valves were the best, did you go with a mech. valve. with your re-op?

If I have another surgery when I'm over 65, I'll will go with tissue. By that time, it would extremely unlikily for me to out live the tissue valve.

If you had another surgery, would you switch back to a tissue valve?

Care to share your decision making with me?

I'd switch back in a hearbeat!

Though I am very pleased to have recovered, and
extremely happy that this heart surgery habit should be licked,
there's a world of difference between them

This in NOT a knock of mechanical valves

Thank G-d for mechanical valves

Just look at me - I got a click, but I'd ordered the oink

My agreement with the surgeon pre-op was use a mechanical if there complications

I woke up clicking

It's keeping me alive, now my best pal

Warfarin, INRs, tests, etc are pesty tag alongs

That's the deal with mechanical

There wouldn't be a market for them if they didn't save our lives

Phil

 

[tobagotwo]

If it is to be proposed that tissue valves are pushed because they represent full employment for surgeons, it should also be noted that most cardiology practices in NJ (and I suspect elsewhere) run Coumadin clinic labs at least weekly, a well-established and continuing source of revenue with minimum investment.

Now, which one would have more impetus? The one who may or may not be practicing in ten to twenty years, when the tissue valve patient comes looking for a reop? Or the one who'll get a visit - and lab fee - every month from his new ACT client..?

Obviously, neither of these scenarios is desirable, and none of the doctors would agree that this is their reasoning. Maybe we can stop theorizing about the doctors' financial motivations, as it's not really germaine to the relative values of the valve types.

Best wishes,

 

[lynnebhunt]

Thanks

Thanks

He had his done at Boulder Medical Center in Boulder. His surgeon was Thomas Matthew. PM me if you're interested and I'll give you his information.

Dr. Matthew was wonderful, in fact, we have a friend in BCH right now who we referred to Dr. Matthew that just had mitral valve replacement. His office is located in Niwot and he has privileges at both BCH and Longmont United Hospital.

As for Boulder Medical Center in general, I've had two surgeries there and Mike had his OHS and I have never found better care. In in the Cardiac ICU, it's 1:1 for nursing and then in the cardiac card unit, it's 2:1 nursing. I was amazed at the quality of care.

Let me know if you'd like his info. Where in Denver? We're in Estes Park. There's a few people on the site in Colorado.

Thanks -- if it gets to that point, I will let you know. I live in the south area of town -- Highlands RAnch, which is in Douglas County. I am just beginning my journey with this stuff!

Lynne

 

[Gail in Ca]

My doctors felt a mechanical for the redo was the best scenario for me, as I needed it at age 46, so another 11 yrs, I would be 57, another 11,68, and so on would be an absurd number of surgeries. My cardio talked about the Ross procedure, but finally felt that mechanical was the way to avoid a 3rd surgery, I always got the impression that the least amt of surgeries, the better.
In my case, the pig valve was leaking, I had a cath, and afterwards the nurses gave me a fluid overload, I went into CHF. I believe at that time my pig valve really began to fail, and a leaflet was torn. I went to ER 4 days after the cath, and was at death's door before my redo. My surgeon replaced pig with mechanical, but my leaky mitral could not be addressed at that time because of my condition. He said any additional surgery would be done thru the rib for the mitral if I ever needed it replaced. I got from him that to go thru the sternum again is adding to risk, and he has done alot of AVR's.
So, I guess that sums up why I have a mechanical for the redo, even though I preferred the pig valve. And really, the pig averages only 8 yrs, I got 11 which was thought to be really good. But, 11 yrs goes by too fast. I am always greatful that I had 11 yrs with no coumadin issues. But, that redo took much more out of me than I thought it would.
So, there are many things to consider when having a valve replaced.
I have always been in good physical shape, and still the redo and the problems I faced before it almost killed me.
Gail

 

[RCB]

Thanks for the feedback

Thanks for the feedback

Rachel_Howell, Toronto Guy and Gail,
I appreciate you sharing your very complicated decision making process.
It shows how very difficult it is for both you and your cardiac care team. One thing we all can agree on, research studies aside, re-op can be very difficult
and should be avoided.

As for theorizing about a doctor's motivies- I'm not the first to do that, as many on this site have. The oversupply of cardiac surgeon has been a topic of discussion by even surgeon themselves. There are many reasons for this- new drugs promise the near elimination of CABG- the highest volume surgery, more procedures being done by interventional cardiologists,
progress toward early intervention to improve heart heath and many others.
It was even annouced last week that cancer has overtaken heart disease as the number one killer in Americans- no small feat! We all know the most common way to judge a cardiac surgery program is by volume. To keep their skills up- a surgeon needs practice to keep at the top of their skill level.
There is no disagreement about this. Cleveland Clinic is building a hugh Heart Center, ready for pts. in about 6 years and at the same time, Toledo's(90 minutes away by turnpike) two major hospitals have also annouced plans to
build their own Heart Centers. It is possible that surgeon who have supreme
confidence in their abilities and a need to keep their skill levels up might choose a path that would lead to repeat business in for what many surgeons
is a 35 plus year career- well, I will leave that up each member. Before you dismiss it out of hand, you should at least consider the Tenet Health Care investigation.


Having dealt with surgeons and ACT fees. A surgeon makes more money
in one surgery, than will ever be made in a life time of ACT fees. Doctors who handle ACT do it as a service to their pts. and for legal considerations.
Most doctor consider it a headache and a loss leader. One only needs to read
the horror stories in the Coumadin section to see how much interest doctors have in ACT. What my doctor collects for my ACT is pure charity, as I have written before in the Coumadin section where it is best discussed.

 

[tobagotwo]

RCB, The post wasn't intended as a swipe at you for proposing that doctors look to profits. If it came off that way, it was not intended to. Absolutely it is not the first time it has been done, it has some validity in some cases (hopefully isolated), and I have certainly alluded to it as well, when it has served my arguments (although I've aimed mostly at statin manufacturers).

I have just felt that the triggers, such as they may be, for both were entirely different to the point that they balance each other out. It's a guess as to their intentions, and not likely to be provable. And it doesn't make sense for the by-far largest group of VR cases, which is people over 65.

It wouldn't explain why the vast majority of surgeons and cardiologists recommend tissue valves for patients over 65, whose valves will last the maximum due to their age. Even for those already on Coumadin for other reasons. The surgeons do not expect to ever see them again, so there would be no benefit to placing a "temporary" valve for return business.

And there are numerous generalized differences in the cardiologists' approach and the thoracic surgeons' approach. It's not limited to valve choice.

For example, many cardiologists don't want patents to have surgery until the last moment, perhaps because it means they didn't manage it as well as they could have, or gave up too soon to surgery, especially if it doesn't go well. They are even willing to risk their patients' health on exercise stress tests, despite the warnings and guidelines of their own peer community (AHA/ACC) that recommend against it, just to prove they waited as long as humanly possible.

The surgeons seem to want to do it earlier, perhaps because they know that a healthier heart does better in surgery, recuperates faster and better, and leaves better numbers and more grateful patients.

I tend to lean with the surgeons on that one, as that's the outcome I want. But the lines remain fairly clearly drawn between the two, and are well delineated in many of the site's posts.

The points of this are that the for-profit motivation would never pay back for the bulk of their business, and the viewpoint differences between cardiologists and surgeons are not limited to choosing valves for younger people. There are so many other factors in the mix to consider, it would be difficult to separate out greed as their primary motivator.

Best wishes,

 

[RCB]

There are so many other factors in the mix to consider, it would be difficult to separate out greed as their primary motivator.

Best wishes,

Tobagotwo,
I did not want to leave the impression that greed was a primary motive in their valve choice, but then it doesn't have to be. There are plenty good
reasons why to choose a tissue valve as you have elucidated so well on this forum. However, that may not be true of the industry. If there was some subliminal reason to select tissue valve, they need not be explained because there are also justifiable reasons for that selection.

Certainly, as the ACC recommends, anyone over the age of 65 get a
tissue valve if they are a canidate. The tricky part comes as tissue valves
are being promoted for younger and younger pts. without real informed consent. We have heard from the above three members about their choices.
I think our member, Moo also made a similiar choice. It is a valid choice as long as people realize that they reap the benefits(not being on warfarin) right away and pay later(having a much earlier surgery, maybe in as little as a few
years in young active people).

We agree on more than we disagree, but we are advocates for our views.
We view things from a different prospective- You, from one very successful surgery in which you had a remarkable recovery and me, who has had four and has residue problems because of the number of surgeries. I think you and I share a common hope that our members have results of their OHS surgery more like you and less like me, we just have a diffferent way of achieving that goal. That is okay

 

[Karlynn]

Wow. tough crowd for a newcomer

I had a tissue valve implanted when I was 55 a year ago.

I weighed all my options and decided I could not bear being sentenced to lifelong Ac-therapy, the bleeding risks, I also love travelling internationally, love eating what I want when i want it, hate the idea of a noisy therapy solution, and think I may need other (hip) surgery later...

Welcome Smoothie!

I'm a Coumadin user that travels internationally. France, Rome, Italy, Greece, and Turkey have been my destinations in the past 5 years. I'm probably returning to France this summer. And I also eat what I want. Just didn't want to give anyone the impression that Coumadin puts an end to the travel bug.

That being said - if I was 55 and having a valve replaced, I'd be giving tissue a serious consideration. And to be honest - I don't know which way I'd go. I had my valve replacement 13 years ago at the tender age of 32 with a St. Jude mechanical and it has suited me well.

While we all like to be cheerleaders for our own valve selections, I think the vast majority of us know that it is a personal choice, with as many different reasons for selections as there are people.

 

[Sherry]

This is just some general insight about my own experience seven and a half years ago. I was 33 and went in for a MR repair and came out with a St. Jude's. No choice in the matter because the repair failed. As a young woman, it effectively put an end to my childbearing, as others such as Karlynn and Gina can attest. I wish my surgeon and I would have had a more informed discussion about choices or that this forum existed so that I could have gone into the experience feeling more empowered, but we didn't talk and Hank hadn't created this place yet, so I put all my blind faith and trust in my surgeon. Is the artificial valve a pain? Well, yes, keeping up with the INR checks is cumbersome at times, but I've grown rather fond of my Coumadin nurse and actually consider her a friend. Do I hear the clicks? All the time. I'm rather thin and especially on top, so I hear it all the time. There are other issues with occular disturbances and the like, which we forum members have beaten to death over the years, but I guess as I approach my eight year anniversary, and think that if I had gotten a tissue valve, that I may be looking at surgery in a few years or so, I'm happy to have the artificial.

Lots of different opinions here, but at least you have access to this wonderful forum and will feel empowered as you make your decision.

 

[tobagotwo]

We do agree on much more than we disagree.

The choice lies within each of us for our own reasons. As far as tissue in younger patients, there is reason enough for some. For some women, it is the possibility of childbearing. For some men, another decade or more of relatively carefree existence. For most, though, this will pall before the thought of intentionally repeated surgeries. I don't know what I'd do if I were in my thirties, with this decision to make.

The best thing that we can give someone to make this choice is the information and experience we have and have shared. And our support with it, however they decide.

The difficulty, as we all have realized, is what to give. We try to sift through that information to determine what is real, what is hype, what is most likely to happen, and what would it look like if something went wrong.

It's a tall order. Especially since so much of the information is not in yet, and won't be for too many frustrating years. And the information that is available is already aged, and sometimes temperamental in meaning.

I'm glad to be sharing these forums with so many thoughtful and concerned individuals, all willing to take their time to hold out a hand to the next one climbing the mountain.

Best wishes,

 

[tobagotwo]

"When possible" would be pushing it too hard. It's true, though, that most cardiologists and surgeons will suggest a tissue valve to their patients over 65. (You can request a mechanical instead: it will still work just as well.) The tissue valves hold up very well in older folks, and the new ones should do even better. However, if you're truly expecting to make 100 years old, the mechanical may still be the choice at 65.

The point I was trying to make (apparently badly - I apologize for that) with the profit motivation was that it didn't hold up, as the bulk of patients for valve surgery are over 65, and not coming back for repeat surgeries. While if managed in the assembly-line manner apparently popular here, and with the power of prescription to bring people back for revisits, it can make a profit, ACT probably isn't worth it either, overall. And that was the point: the profit motive for both types really seems to collapse under scrutiny.

As far as the cardiologist having no say in the choice: not so. The cardiologist can get a hefty say in that determination if he chooses to. In two cases I personally know of, they overrode the surgeon's choice of valve type and brand. I am not privy to how the professional courtesy works there, but it certainly exists in some cases. Interestingly, one was a case of a 63-year old woman, where the cardiologist overruled the surgeon's choice of a tissue valve, in favor of a St. Jude mechanical.

Best wishes,

 

[rmn]

HI Lynne,

I live down in Castle Rock but am having my surgery done at PSL next week. My doctor is with Colorado Cardiovascular Surgical Associates. They came highly recommended by my PCP, my cardiologist and others I've spoken with in the local medical community.

Hi --

I'm Lynne. I live in the Denver area, too. Will you e-mail me at "[email protected]" if you find out anything about good surgeons in the Denver area? Who are YOU using?

Thanks

Lynne

 

[Gail in Ca]

When, at 34 I was needing AVR and ascending aortic graft, I basically left the decision to my surgeon at that time. He talked to me about my wanting a 2nd child and I wasn't sure enough to say no, I didn't need another child.
In '89, I didn't know anything about each valve and their + or -. My surgeon, however, presented my case to a group of well respected and excellent surgeons at Stanford. He later reported to me that 1/2 said go mechanical to avoid redo, and 1/2 said go with a pig valve, and I might get 15-20 yrs out of it. So, we decided on pig if possible, and that's what I got. Homografts were being done then, but I was not a candidate. I was very upset when my valve only lasted 11 yrs, but my cardiologist had always told me after surgery and yearly, that 10 yrs would be about it, but I wanted to believe my 1st surgeon.
If I had gone with the surgeon I had for the redo the first time, he would have given mechanical, as he really preferred to avoid redo's.
Gail