Anecdotal Observances

[Ross]

I'm afraid to ask him his thoughts on Viagra!

To set the record straight, I wanted a mechanical valve in the high hopes of never having to go through another OHS again. I will not make it a 3rd time. I barely got out of it the second time. Click Me Dale!

 

[Bryan B]

I think everyone makes some excellent points here. Somehow I was able to come to my decision on my valve choice(s) after about a week of research.

1.) Ross (procedure that is )

2.) Bovine Pericardial

3.) St. Jude

I have accepted the fact that which ever valve I wake up with will be the best valve for me based on my surgeon's decision.

My open questions revolve around things like can I afford a surgeon that does the Ross if none are available in my insurance network? If not will a non-networked surgeon that performs the Ross procedure be willing to negotiate with my insurance company? Will I be able to have the surgery near my parents and sister at Duke?

I talked to my cardio and CV surgeon here in Nashville and I'm patiently waiting to hear back from them concerning a referral to Duke. My CV surgeon mentioned that I will probably want to have a pediatric CV surgeon do my surgery since they have more experience with VSD repair. One name keeps popping up...Dr. James Jaggers. He is chief of pediatic cardiac surgery at Duke and is very experienced in the Ross procedure. I'm hoping and praying I get to meet with him to discuss my case.

 

[epstns]

Chioces. . .

Chioces. . .

Bryan, Al and everyone, I cannot yet speak of "My Choice" as I'm still far enough before surgery that I haven't even been talking to surgeons yet. I have, however, had some very candid talks with my cardio, and I can sum his comments thusly, "If I needed aortic valve replacement at 'our' age (mid-50's), I'd opt for the St. Jude's in a heartbeat."

So far, I'm with him. More later.

 

[ccrawford]

For what its worth guys, Coumadin management really isn't that big a deal, especially if you are a home tester and spend a little time to understand how the drug works. The point I really need to make though, is that there is another piece that needs to be considered in this thread - that being the coming of Exanta. Generally it is expected to be approved for valvers this year and will make the whole business of coagulation management a whole lot simpler and presumably safer. Even if Exanta were not on the horizon, I'd stick my finger a whole bunch of times to avoid getting my zipper unzipped again - that's not a fun process. Chris

 

[Granbonny]

Plain and Simple

Plain and Simple

Valve choice..Mechanical. ONEopen-heart surgery. One year to recoup..and never think about another surgery. Just remember to take a pill a day (which is No big deal) But of course we coumadin takers could say that over and over..but unless.you take it..you would know that.. or.............Tissue Valve..No coumadin (if you are lucky) one year to recoup..and another surgery 10-15 years down the road..And remember. your caregivers will be older too. ... Any valve you choose will be a good one Bonnie

 

[dwfreck]

Click Me Dale!

So, which one of us is Daffy, again?

 

[dwfreck]

Chris,

With respect to Exanta:

Do you think the change to a different anti-coagulation therapy will change the health professionals' opinions that got this whole thread started? Do you think they react negatively to Coumadin therapy because of the drug, or because of the anti-coagulation effect it's intended to produce? Do you think their opinion of Exanta therapy will truly be any different?

If your answer to any of these questions is, "yes," I'd sure like to know more about Exanta!

 

[dwfreck]

Re: Plain and Simple

Re: Plain and Simple

And remember. your caregivers will be older too. ...

In my case, that's a good thing because two of my potential "caregivers" are currently 4 and 6 years old. Even if they're only teenagers at the time of the second surgery, they're bound to be more help (well, maybe they'll just be less underfoot). Not that I've DECIDED on a tissue valve...

 

[Ross]

So, which one of us is Daffy, again?

What? I suppose you wanna be Yosemite Sam?

 

[ccrawford]

Dale -
Coumadin is the most interactive drug on the market, bar none. The list of prescription drugs, non prescription drugs, and herbal remedies that can cause a coumadin problem is a very long list. This fact, and the fact that the human body is also variable, makes Coumadin the most monitoring intensive drug on the market, bar none. I would also guess that a lot of health professionals haven't really gotten into the entire world of Coumadin management, and their reaction is one of "That stuff can be bad news, lets avoid it if we can." Xanta promises to take a lot of the variables out of coagulation management, and I'm predicting that it will be a hit with both patients and health care professionals (except those that run Coumadin clinics) My opinion is this will put mechanical valves ahead of the game unless some other advances in tissue valves occurs (which is very possible) Bear in mind, Xanta will probably be more expensive than Coumadin, at least until the patents run out. Hope this helps. Chris (With a St Jude ticker)

 

[Kenny F]

As a tissue advocate, I have to say that there have been significant advances:

1) The Bovine pericardial valve is now stretching towards 20 years of use, with excellent results in adults. Common stats are 80% chance of seeing 20 years (bear in mind, that is all the data available)

2) The Homograft is also approaching 20 years with similar results. The preservation techniques have advanced dramatically. Again, that is all the data available, but it could last forever.

I do not take coumadin, and at 10 weeks post I am beginning to believe this event is getting behind me. I do not think it takes a year to recover - maybe a year to forget. None of us will ever fully get past the assault on our chest! My biggest lingering effect is an accelerated heart rate and higher BP, but there are no other abnormalities in the EKG and it is expected to return to normal (compare pre-op: resting pulse 75, BP 115/75 - post-op: resting 96-120, BP 140/100). We are trying Cardizem again to slow it down.

Perhaps I am fortunate in my recovery, but I also believe that you should have surgery BEFORE you are sick! I was in pretty good health to start with, altho no athlete, and had no other risk factors. I was also highly motivated to make this work - it was not an option to have valve replacement, so I committed myself to the course with a positive mind set and a plan to recover.

I am working full time, in every sense of the word. Real estate is a full-on proposition if you are making a living at it. I have 3 teenagers, we have a full schedule, I go to rehab 3x a week... in short, life is not just getting back to normal, it is better than normal. I gladly accept the soreness in the chest for the increased blood flow and energy.

I don't think one should be so quick to dismiss the tissue option. And Exanta may not be the magic bullet everyone thinks it is. And Coumadin, while certainly a manageable drug, is still a significant lifestyle-altering regime.

Anyway, that is my thinking on the subject - of course, I HAVE a Homograft, so I will certainly defend it

 

[dwfreck]

Originally posted by Ross
What? I suppose you want to be Yosemite Sam?

Actually, the nickname given to me by my broomball teammates was Taz.

Why, you ask? Let's just say I lead the team in penalty minutes, and leave it at that!

 

[Bryan B]

Dale,

I don't know if you wear a tie to work, but I have one with Taz on it...sounds like it would fit you to a tee.

 

[MarkU]

Interesting listening to this discussion. The only thing that I would add is that everyone is unique and there is no "one size fits all" solution.
I am absolutely convinced that I made the right decision for me.
No matter how much medical and statistical research you do, at the end it still comes down to a leap of faith in the direction you choose.
Mark

 

[Ross]

Ok Dale, Taz it is!

 

[Rain]

You can't keep him out of the flower bed... impossible!!

You can't keep him out of the flower bed... impossible!!

Those of us who DO have problems with ?rat poison? tend to stay quiet. I hate, hate, hate the stuff! BUT.... I wouldn?t want my complaining to impact anyone?s decision on valve choice. On the other hand, I don?t think telling them it?s a ?piece of cake? is doing them any favors either.

It?s all about how ?consistent? you are. I continue to be amazed at what has an impact on my INR. I wouldn't recommend it (rat poison) to anyone I care about, unless they are REAL close to leading a 'rocking chair' life style.

My two cents worth...

 

[bvdr]

I think I should enter this thread about now

I recently found myself in what one of my doctors described as a perilous predicament. I was maintaining steady in my INR target range of 2.5 to 3.5 and actually home testing about twice a week while I experimented with some different foods and fluctuations in my physical activity. Everything was fine. I was even slowly increasing my weekly dose to edge me into the higher end of my target range. I have my physicians blessing to do this.

Then on New Years Eve I developed abdominal pain and got real sick real fast. I could keep nothing down. This is a problem when you are on coumadin. New Years morning I was in the ER and was actually relieved when my INR came back at 4.0. The abdominal and pelvic catscans were abnormal and more tests needed to be done including a colonoscopy which couldn't be done until things improved. Anticoagulation was a complicating factor in all the discussions.

After the antibiotics proved to be working and I was on Lovenox injections I was scheduled for the colonoscopy. By this time I already had my surgeon, electophysiologist, cardiologist, gastro-enterologist, and my primary medical doctor seeing me. One dose of the Lovenox was held and I had the colonoscopy the following morning. The diagnosis was transient ischemic colitis. I had developed ulcers in my ascending colon that fortunately had not begun bleeding heavily. But the presumed cause was a CLOT from my mechanical mitral valve that had dislodged and ended up blocking the blood suppy to part of my colon. Coumadin reduces the risks of clots but does not eliminate it. I was told this over and over.

The whole thing got really complicated. I'm not sure what would have been done if I had really started bleeding.

I continued on Lovenox and coumadin when I was discharged. I tested my INR twice while I was in Mexico the last couple of weeks and once it was 2.4 so I took an extra dose and upped my weekly dose by 15% and tested in 6 days and it was 2.5. I took one more extra dose and kept at the higher daily dosage. That was 8 days ago and tonight (now back at home) I tested at a 2.0.
which makes me nervous. I know my risk of another problem with a clot is very high. I get another echo in 6 weeks.

I am glad I am able to home test and hope this all straightens out soon.

As long as I have a mechanical valve I need to be anti-coagulated and will deal with it. But having to be on warfarin presents new challenges.

 

[ccrawford]

Rain and Betty's posts were good ones and simply illustrate the point that everyone is different. Coumadin can certainly make things a little more complex if other procedures are required or if other health problems arise. I was taking Coumadin before my valve surgery because my original aortic valve was throwing mini clots.

 

[heartyone]

This is a great assembly of thoughts that's sure to confuse anyone who is trying to make a decision!!!

My wife is a Coumadin patient and couldn't be happier with it. She's an active outsdoorswoman and a hearty exercise freak and healthy eater. She's just a bit more careful now than before with her wildness and for her diet she very consistently. She has a "map" of her food for the week and sticks with it week to week, even when travelling. She tests her blood at home every 2 weeks and is consistently within her goal levels.

She has a mechanical aortic valve -- age 50 -- and although I am the one that made the decision as to what valve she would receive (she was unconcious and intubated), she is sincerely happy that this choice was made. Facing another surgery is so daunting to her that she'll take all the rat poison in the world to avoid further surgery.

It's interesting how casually we all talk about "repeat surgeries," when a natural tissue valve is ready to be replaced. It's a wonderful time we live in, that this can even be discussed as an option.

 

[dbbrooks]

I stepped back from this thread after I initiated it 3 wks ago. Our membership ran with it, and it now represents a thoughtful, sometimes impassioned dialogue that will serve to rapidly indoctrinate any newbies into the profound decisions that might be lying somewhere down their path.

I would now like to weigh-in with my personal perspective on my, perhaps improperly cavalier, attidude to the reoperation. The misinformation that I might have clouding my perspective is that I have a mother that had two lobectomies and and a wedge resection over 14 years, starting at age 54. She flew through each procedure with a complication or two but never a moment's doubt about doing the next one, but she ran out of lung so she had to settle for curative radiology, then chemo. I am of course unable to weigh the relative riskiness of subsequent procedures, respectively, but I venture the heart reop would be the tougher one risk-wise. Pain and suffering-wise, again not qualified, but surgeons have told me when asked that they are comparable but the lung has its own special agonies (like every searing hot breath).

No matter how risky or painful a reoperation might be, I am comforted with the fact that one's risk and pain will be under the direction and supervision of the very tip-top the medical profession food chain, and their attention and focus will be intensive over a fairly short period of time.

The risks of anticoagulation therapy owing to the decades long timeframe, are much more diffuse and uncontrollable, requiring the patient themselves to be the principal healthcare sentinel, often crically interacting with something less than the tip-top of the medical profession, and for that matter, well meaning chefs, hosts, consumer product manufacturers, and just plain bad luck.

Just my perspective.