A new day, and something new

[AngelaR]

Happy Tuesday everyone.

You are never going to believe the morning I have had.

Well as I have said in previous posts we were to see the surgeon at the VA today about the carbomedic. Well we changed our mind and were interested in the On-X, not only for the FDA clinical trial but also the dynamics of the design, etc. So I was talking with a gentlemen by the name of John Ely and he said Ray could be part of the study but we had to have the surgery done at a facility that they had. The closest one is Virginia Common Wealth University Division of Cardiothoartic Surgery. So I contacted my insurance and this hospital and the surgeons there are approved for our coverage.

I emailed Dr. Derek Brinster and he set me up with his scheduler and we are to see them Friday. So we decided to cancel our appointment with Dr. Trachiotis for today as we are interested in the On-X and he will not do this valve.

Well I canceled the appointment and Dr. Trachiotis called Ray and told him that the On-X was a dud and that it hasn't been around long enough and that taking coumadin isn't that big of a deal and just really scaring Ray. Ray and I talked and agreed that we were going to see Dr. Brinster and if we weren't happy we would go back and talk with Dr. Trachiotis. So I called and canceled the appointment AGAIN.

I got put on hold and Dr. Trachiotis got on the line and was basically yelling at me. I had to ask him to stop and not to treat me like a child. That I completely understood that this was my husband's OPEN HEART SURGERY and that this is they dynamics of our family. How dare he act like we were half hazardly making a decision about this.

I told him I had seen no clinical studies that proved that the On-X was a "dud". He said it was all a marketing ploy, and "he didn't want to toot his own horn but he was the finest cardiac surgeon in the region"

For him to have taken this so personally, like us getting a second opinion was some sort of a crime.

We completely understand that you still may have to take coumadin with the On-X valve after the conclusion of the study. But there are other benefits besides this. Plus I didn't appreciate him telling me that coumadin isn't that big of a deal. That is very easy for someone to say who is not faced with taking it.

I was just very taken aback that he was so "passionate" about us going somewhere else. I'm just speechless.

So we have an appointment with Dr. Brinster and his team and the people who are conducting the FDA study on Friday. There is no guarantee Ray will be in the group that takes the Plavix and Asprin, he could be in the control group that takes the coumadin. They do provide an in home INR tester.

He will have to take aspirin and plavix for 5-7 days and then go back in for blood work to see if he is sensitive to the treatment and then his info gets put in the computer. We would then find out 3 months after his surgery which group he would be in. We know all of this, they aren't telling us yeah, come on down we'll put you on the plavix and aspirin right away, or you won't have to take much coumadin.

Dr. Brinster specifically told me he would go over all of our options and explain all of the valves. And if we still felt this was the best choice then great. If we decide it isn't the best choice I don't even know if after the conversation with Dr. Trachiotis if we will go back to see him.

I thought he was completely unprofessional and to excuse himself he told me he "cared too much". I thought second opinions were standard. ESPECIALLY, when it's OHS.

I don't know what is anyone who would like to throw an opinion out there think??

 

[Ross]

Being one who takes Coumadin, self tests, and self doses, I can say being on it is not as terrible, big and bad, etc. We've heard it all, evaluated things for ourselves and found most of what we were told is hogwash.

Not trying to say which valve to go with, that's up to him, just want you to know Coumadin isn't nearly as bad as it's purported to be.

The largest problem with Coumadin was and still is, the medical community not being on the same page. For some reason, they won't learn new things and insist on living the old.

When I had mine replaced in 02, my surgeon wanted to use On-X, so it's been around a long time. I'd have one too had they had a model with a graft sleeve attached. They didn't so I ended up with St.Jude and it's performing away.

As for your Doctor, that was really really brazen. I think I'd fire him personally. It's my life, not his, that we're talking about.

 

[WayneGM]

I'd be speechless, too. I didn't happen to get a second opinion, as I was having a MV repair done by Dr. Tirone David who by all accounts is one of the best at valve sparing techniques, but if I had I certainly would not have anticipated this kind of unprofessional reaction. This doc sure sounds tempermental. I'm not sure I'd go back to him.....just my 2 cents.

 

[Phyllis]

Reminds me of the appt. we had with a surgeon at Yale New Haven before deciding on Brigham. Dick was interested in minimally invasive and the newest Edwards Magna valve and this surgeon phoo-phooed both and wanted to make an appt. for Dick to have surgery asap. Needless to say, we found Dr. Cohn at Brigham and were very happy with the results. Yes, you certainly have a right to a second opinion and a third or fourth if you want it! I think you have made a good choice and hope all goes well for you on Friday. Please keep us informed!

 

[Karlynn]

We completely understand that you still may have to take coumadin with the On-X valve after the conclusion of the study. But there are other benefits besides this. Plus I didn't appreciate him telling me that coumadin isn't that big of a deal. That is very easy for someone to say who is not faced with taking it.

It's so hard to take a doctor's word for anything when you've been treated in such a way. That would make me switch doctors.

You are right that there are reasons other than Coumadin that make the On-X a good valve. Coumadin for me is no big deal. I've been on it 16 years and educating myself on my own management and then doing it is what makes it "no big deal" for me. Knowing that, I can also tell you that if I had to have another valve replacement - On-X would probably be at the top of my list, for reasons other than the low-warfarin, no-warfarin studies and hopes. The flow dynamics are very attractive.

Ross is right - the biggest deal with Coumadin is those in the medical community (which there are still a lot) that have not bothered to bring themselves into the 21st century on their management and knowledge of the drug. It's like a mechanic trained to service 1990 engines, not bothering to update themselves on all the computer components in newer cars and then trying to service a 2007 Lexus.

I'm surprised that the doctor told you it was no big deal, we often see that they say quite the opposite. However, the guy sounds like someone who does not want to look at this as a cooperative experience. No matter whether what he has to say is right or wrong (and he's proved he can say both!) you need to find someone you can trust and communicate with easily.

 

[AngelaR]

Thank you everyone.

I agree with Karlynn and Ross that the coumadin is not the big bad wolf. Of course we still have concerns about it. Afterall it IS a drug that will alter his body. We are prepared for this. I'm not throwing any stones at coumadin. And yes, Kudos to Dr. Trachiotis for recognizing that coumadin isn't the end of the world. It was all the words that seemed to fall out of his mouth before this statement that have bristled me.

You get a second opinion if you have to get a knee scope. Why wouldn't you get a second opinion on OHS!!! The part that makes me the most mad is the call he made to Ray. Like he isn't stressed enough. I am sure you all remember some of the anxiety you went through leading up to the surgery. Shortness of breath, loss of attention span, snappy and distant, not to mention just the whole am I going to die that looms over everything you do.

What a jerk! He sent me an email and it is taking all the restraint I have not to send him something snarky back. But I am (trying) to use better judgement and restrain myself!!

 

[Ross]

You can get all the opinions you want, just do it with reasonable speed.

 

[lance]

How unprofessional. Yelling on the phone?

How unprofessional. Yelling on the phone?

Angela,

It's beyond belief a professional, cardiothoracic surgeon behaved this way. If he "loses" it this easily I don't think I'd want his hands in my chest anytime soon.

If I remember correctly the On-X valve has been on the market for a long time and must have a reputation by now.

The only time a "professional" yelled at me--he had reason. I was inquiring about a procedure he performed that caused permanent damage to me and he was unwilling to discuss. I guess I pushed him too hard. And the yelling as he showed me to the door was heard by everyone in his waiting room. They got an earful.

Dr. T--the most unprofessional professional I've heard of.

 

[Fast Eddie]

I got put on hold and Dr. Trachiotis got on the line and was basically yelling at me. I had to ask him to stop and not to treat me like a child. That I completely understood that this was my husband's OPEN HEART SURGERY and that this is they dynamics of our family. How dare he act like we were half hazardly making a decision about this.

I told him I had seen no clinical studies that proved that the On-X was a "dud". He said it was all a marketing ploy, and "he didn't want to toot his own horn but he was the finest cardiac surgeon in the region"

Angela

This Dr T sounds like a bit of a wacko, if you ask me. This is a big operation. You all have to have complete trust in the surgeon who will literally be holding your life in his hands. Being confrontative with one's patients doesn't sound like a good plan. And having a surgeon 'not wanting to toot his own horn, but..' is weird. When my surgery came up I wanted to hear from OTHER people how great my surgeon was, I didn't want to hear it from him.

I have been completely comfortable with choosing the On-X.

Fast Eddie

 

[AgilityDog]

I think you'll love VCU Medical Center

I think you'll love VCU Medical Center

Assuming you are talking about downtown Richmond.
My sister was treated there for her leukemia (AML-M4) in 2005/2006. She did not make it, but the doctors and staff were WONDERFUL. I could not have asked for a more caring, experienced group of people, at what was one of the most difficult times in our lives. If their cardiology department is half as good as their oncology staff, you'll be in good hands. The worst part is that there are only a couple decent hotels within walking distance, $$.

 

[ctyguy]

AngelaR...

I concur with the group in that I would take pause if a surgeon who I am considering to utilize for a very significant procedure called me and yelled at me for seeking a second opinion. Additionally I would take pause if he decided to proclaim that he is the best surgeon in the region. I tend to go for the folks who are level headed and not easily flustered when it comes to my health, my family, and my finances. I've heard the analogy that the loudest guy in the room is generally the weakest ? Not to say this guy isn't a good surgeon, Im sure he has his credentials and has had many positive outcomes. I just don't think I could trust someone who treats me (or any of his patients) that way.
As far as the On-X valve goes, time will only tell. It appears thus far to have a very good track record and the technology put into the design seems promising for blood flow, how the valve opens and closes, and how its installed. My surgeon said its technically more difficult because of the profile of the valve but once its properly seated its much more secure. Those aren't his exact words but given his body of work I trust he knew what he was selling me. I'm 3+ weeks now post-op, minimally invasive procedure (5 inch incision) and today I bagged the pain killers completely and am about to go for a walk on the treadmill. Its the best I've felt since I came home from the hospital.
Hopefully this valve is all its cracked up to be, you have to put faith in the "experts" out there. Thats what I did. Getting more than one opinion about the type of procedure and type of valve just makes sense. Why put all your money down on the first horse you come accross ? This new doctor sounds more level headed, hopefully you can see him quickly, make a decision on what is best for you, get is scheduled, and get it done ! Once you have a game plan you and your husband are both going to feel a heck of a lot better.

Best regards....

 

[MikeHeim]

I just want to add my vote (to make it 11-0, or something like that). Your original surgeon has no right to make you feel bad about getting a second opinion, and declaring the ON-X to be a "dud" without any information to back it up is just plain irresponsible. Regardless of what happens with Virginia Commonwealth, I would look for someone else to do the surgery.

 

[bodman25]

I agree with everyone else. The surgeon had no right to do that. This time is already stressful and that just makes it worse. I would definitely find another surgeon. Good Luck.

Bodman25

 

[CHDDoug]

Whether you used Dr. Brinster or not, I'd absolutely 'fire' Dr. Trachiotis. I personally would not feel comfortable going with a surgeon that acted in this nature. As you said, it's your husband's life! OHS is a big deal and you want to make sure that you feel comfortable with surgeon, facility and valve choice that you make! I personally sought 3 opinions from all across the nation and ended up going with one 12 hours away. It appears that your situation may be what mine seemed like...political situation where the hospital wants the 'business'. I didn't feel comfortable with the local surgeon doing my Ross, so I went elsewhere. That's just how I approached it.

I wish you the best and hope that your situation resolves itself soon...and to your satisfaction.

Take care...

 

[tobagotwo]

Whether you used Dr. Brinster or not, I'd absolutely 'fire' Dr. Trachiotis.

That pretty much sums it up. Lose the petty tyrant.

They say that the Lord works in mysterious ways. It certainly seems that you've learned something very valuable about your originally intended surgeon through some intervention of Grace. It would be a shame to ignore it.

If he'd have phoned me, he'd have learned at least two new words by the time he managed to get off the phone...

Best wishes,

 

[pamela]

If you feel that Dr T overstepped his professional bounds, please take the time and report his behaviour to his associate organizations and fellows. Although it may seem that he won't feel any professional repercussions from your complaint, perhaps it may make him think about how he behaves in future dealings with potential patients.

Don't jeopardize your own reputation in this, though. Be circumspect in how you present your case. http://www.ctsnet.org/home/gtrachiotis <<< is this the doctor?

Take Heart,

 

[Philip B]

Temper, Temper

Temper, Temper

This situation seems like a no-brainer. Regardless of which valve you guys choose, it's time to end your relationship with Dr. Trachiotis. I'm sure if he's as good as he thinks he is, he won't miss your business.

-Philip

 

[AngelaR]

Good Morning, Everyone.

Thank you for all your kind words and reassuring me that I didn't take his actions out of context.

I agree with you, ctyguy, in my line of work (Marine Corps and now Civilian Marine) usually the guy who talks the most does the least. And woot woot!! Laying some rubber on the treadmill!! =) And no more pain killers, you are cruising right along here. That is awesome =D

Yes, Pamela, that is he. I am not sure about reporting him. His behavior is unacceptable, and I do feel bad for those who do not have any other choice but to use the VA. I will have to ponder this.

Tobagotwo - yes, I think fate has intervened for us. And I will definitely pay attention to that. I did have a few choice words for him, but I decided to take the high road, instead of losing my mind on him. Karma is a brat when she wants to be ;-)

I said the exact same thing last night to Ray. I don't care if we don't like Dr. Brinster and his team we won't be going back to Dr. Trachiotis. We are afforded the opportunity of some time in choosing our surgeon and valve, as I know a lot on here did not get that chance. And we will make a timely decision, but it will be well informed and that just may take seeing a few more surgeons.

Philip B - that is what my BOSS said. He overheard me on the phone as I took this call at work. And when I got off he was like who in the heck was that. I told him what was going on (both my boss' have been awesome and very supportive through this). And he said well if he is "the best surgeon in the region" surely he won't miss your business.

When I talked to Dr. Brinster and his nurse yesterday after this happened Dr. Brinster said he hadn't heard of Dr. Trachiotis. Which Richmond and DC are 90 miles apart. It's not that far, if someone was "that great" you think their reputation would spread at least an hour and a half.

AgilityDog I am sorry to hear about your sister, but that is reassuring to hear good words about the hospital. I got that feeling from just talking to the surgeon, his nurse and admin staff. They were very attentive and personal. Gives me some settling as we wait for Friday to get here.

I can't see how he could be so against the On-X when didn't the same guy design the Carbomedic? Dr. Jack Bokros? At one time the Carbomedic and the St. Jude's valves were the new kids on the block. This is the email he sent me yesterday after he cooled down:

Sorry you will miss the appointment for your husband. I trust that I and our team will have the opportunity to meet you and your husband. Please be careful when looking at trials regarding ?anticoagulation? and heart valves. The manufacturer, as I stated, still recommends coumadin, and the level for the ONX valve, now or for the trial, is what we have been using well before ONX was on the market?an INR =2 with a baby (80mg ASA). For the record; carbomedic (Sorin) has had trial, post market analysis, and large database results for over 25 years. ONX in comparison a mean of only 2-4 years. The trial uses PLAVIX and a baby ASA; there are no American Heart or American Cardiology or Cardiac Surgery guidelines for this; yet we know from treating patients with blood clots, or heart attack, or atrial fibrillation, that major bleeding risks (ulcer, GI bleed, etc) are the SAME; and in your husbands case, if he sustains a major gunshot it will be MORE DIFFICULT to reverse bleeding from PLAVIX than low dose WARFARIN. If I advise my family or patients; I would take low dose warfarin and a valve than Plavix, should the trial ultimately demonstrate this or even if it continues to completion, for your husband?s line of work.


All the best,

Dr. Trachiotis

Chief, Cardiac SUrgey/VISN-5

This email just reinforces to me that he didn't really listen to a word I said. He is so wrapped up in the On-X study of low/no coumadin he didn't even hear when I said we like the design and the dynamics of the On-X and the prospects of these things alone and the FDA clinical trial was a BONUS.

I don't think there are any right or wrong choices in choosing a valve. It's what is going to work best for you and what disadvantages you can live with. A lot of people go with the tissue valves regardless of knowing they will have to have another OHS. That is the disadvantage they can live with. Many want the St. Jude because it is been around for decades and that is reassuring to them.

I agree with some of the other posts that Dr. Trachiotis is a little too emotional. I didn't like that and when he said to me "it was unfair of me not to give him and his team a chance." I was thinking of when my 6 year old stomps her feet and folds her arms across her chest and puts her chin down. Furious she isn't getting her way but not really sure what to do with the emotions. This is understandable behavior for her, but not for a surgeon. IMO.

OK, well today is promising to be a better day. I hope you all have a good one.

 

[Ross]

Just remember to have a secondary plan. Sometimes things don't work out and you can't get what you want. This is where you need to call the next best idea into play.

 

[Soilman]

Angela,

I'd be very leary of ANY doctor who was against me getting a second opinion or looking at other available options. I'm sorry, but when I'm faced with a decision like this, I want to make the decision I can best live with! By the way, I have the On-X valve and take coumadin. Like you, I had the opportunity to participate in the clinical trial, but decided not to. My surgeon recommended the On-X for me even before I told him it's the valve I wanted anyway. After the surgery he told me "You have a very good valve" . The only thing Dr. Trachiotis said that I can agree on is that coumadin in not nearly as bad as many make it out to be. Good luck to you and your husband.