"i have never used the on-x valve"

[westie]

back in october the heart surgeon and i selected 03-03-2008 for non urgent mitral valve repair. given this man, who i have got much respect for, has great experience in this proceedure and says i have a 95% certainty of successfull repair, i did not bother to discuss what sort of mechanical valve he would use if necessary.

belatedly i asked if i could have the on-x valve and he replied "i have never used the on-x valve and it has a short track record compared to the st jude valve which has been around since 1977". i guess this is close to a no, but i have written back to him asking if he is prepared to fit an on-x valve and also commented "a model t ford also has a long and glorious track record but that is no reason to buy one today"!

1. seems the on-x valve is the best available, the only drawback being that its track record is shorter than others ?

2. does the thought of being the subject of a widely experienced top surgeons first attempt at fitting an on-x valve ring any alarm bells?

i am 54 yrs and no way do i want a tissue valve, i hope this can be my last heart surgery

any comments?

 

[Karlynn]

He's right, the On-X history is not as long as the St. Jude, but at one point in time, the St. Jude didn't have a long track record either - if you get my point. I have a St. Jude, am very grateful for it's proven track record. That being said - there is a lot about the On-X, that if choosing today, would make me think that's what I'd want. There are many surgeons in the US willing excited about the On-X. Alcapshaw2 had contact information for On-X, I'm sure he'll be along shortly.

 

[Ross]

Westie if he's bucking you, get a hold o Mcritx and see if they can't have a rep talk with him. Some have even been on hand for first time surgeons to guide them. I make no promises, but it has happened in the past.

http://www.onxvalves.com/Contact.asp

 

[Phyllis]

I put you on the calendar for March 3, 2008 and wish you the best no matter your final choice- a repair would be nice!

 

[ALCapshaw2]

Welcome Westie,

Here is a copy of my post to another member asking about the On-X Valve, which has been on the World Market since 1996 (with over 50,000 implanted). I'm sure that On-X can tell you the names of surgeons in N.Z. who have implanted their valves.

Welcome Zack,

You wouldn't be human if you weren't a bit afraid of having your chest cut open and heart stopped while someone cuts on it! So YES, ask your Doc about prescribing an anti-anxiety medication to help calm your nerves.

OTOH, you need to know that First Time Surgeries in patients under age 60 are 98% SUCCESSFUL with a 1% risk of mortality and 1% risk of stroke. Choosing a surgeon with LOTS of experience replacing valves is the KEY to Success.

At least 4 of our members were "First Time On-X Valve Recipients" for their surgeons. ALL are doing just fine. Most likely, ON-X would be happy to send a representative to be IN the O.R. to advise / consult with the surgeon on implanting their valve (they have a recommend method of 'tacking' 4 points around the valve to stabilize it before sewing around the cuff). Contact Catheran Burnett at [email protected] or 888-339-8000 ext. 265 for any questions you may have about On-X or surgeons who use their valves. You may also want to check out their websites at www.onxvalves.com and www.heartvalvechoice.com

To learn more about living with / on Coumadin, see AL Lodwick's website www.warfarinfo.com He is a Registered Pharmacist and Certified AntiCoagulation Care Provider in Pueblo, CO. and is a well known consultant and author on AntiCoagulation issues.

'AL Capshaw'

 

[Bridgette]

Hi Westie

I live in NZ and I have an On-x (implanted 11/12/06)

I think we've talked by PM before.

If you want to know the name of my surgeon and the details of my op (whereabouts etc) pm me and I'll let you know....
I am a bit surprised about what your surgeon said - I know who he is and I also know that he is vastly experienced and highly regarded - seems like he has shut his mind off to the On-x??

Bridgette

 

[Bridgette]

Oops just checked back thru my pm's and I have already told you my surgeons name and hospital, lol.

If you want to ask me anything else though, fire away

 

[westie]

no reply

no reply

over three weeks ago, i sent this eminent surgeon a further email asking if he would be prepared to fit a on-x- valve, if i was found to need a valve replacement. ( his card only has his email address, home phone number and his mobile number, he does not have an office setup ) i sent him a reminder two weeks ago but there has still been no reply. my first email to him took 3 weeks and two reminders to get a reply.

now i really need this guys services and as far as i can work out he is the best available and actually, i quite like him too.

but am i missing the point, is this way of telling me he does not want me as one of his patients, does it mean he is too busy or am i just expecting too much?

i am having to write a cheque for the full 100% of my medical costs and it would be nice to get some good service like i give the customers of my small business, or do diferent rules apply to surgeons?

 

[Susan BAV]

Perhaps your email got automatically sent into his spam folder or something? Perhaps he has a delete-happy assistant? He could be out of the country? He could have had a personal emergency? There are a lot of other reasonable possibilities as to why he hasn't replied to you yet and hopefully it's something like that. Hang in there.

You could copy/print the email and Snail Mail it to him. And you could call him.

 

[Lynlw]

Hi I can understand how furstrating this is. and I am NOT making excuses, but wanted to say, justin's docs are very good about getting back to us, but around the holidays it sometimes takes longer,since everyone is so busy and alot of people travel. Justin's one doc usually answers emails the same day but last year over the holidays we had to wait much longer since his family went home from right before Christmas until a few days after NY. Hopefully that is the case here and you will hear from him soon.

 

[ALCapshaw2]

You could also contact On-X directly and ask the names of Surgeons in New Zealand who have implanted their valves. I 'think' we have someone from NZ who has an On-X Valve. I KNOW we have members from Australia who have On-X Valves.

Catheran Burnett is the Education and Promotion Manager for OnX. She has helped some Aussies contact surgeons that have experience using On-X valves. She will be back in the office on Jan. 7 Her (old) email address is [email protected] (which still works). Her new email address is [email protected]

'AL Capshaw'

 

[westie]

not going to beg

not going to beg

happy new year everyone

i am way less than thrilled to be having heart surgery in march and feel that it is new surgeon time if i end up having to phone him at home and begging him to reply to my emails.

but i will send him a hard copy by regular mail and will follow up als suggestion that i contact catheran burnett at on-x .

my problem is that i am assured that i have a 95% chance of mitral valve repair; if this is correct i need the best repair specialist which is what this guy is and the chances of him throwing a st judes into me, which i just do not want, is remote. therefore perhaps i should not try too hard to get a "on-x valve surgeon" who may not be so good at repair. but then, if my chances of repair are way overstated the valve choice is extra important...

hope you can follow my reasoning

 

[PeggyM]

Westie, you have to have 110% confidence and faith in your selected surgeon. For me, communication is everything. I wouldn't be happy with that type of behavior. Also, there's no guarantee about any valve. My St. Jude valve failed three years after it went in. Of course that doesn't happen to 99% of patients. lol. This past October I had an on-x mitral valve installed, minimally invasive and will hope for the best.

Confidence in your surgeon
Communication
Your surgeon willing to listen to you


It's your body and your heart.

 

[geebee]

Westie,

I understand where you are coming from. My last surgeon was just wonderful at communication and that meant the world to me. Although he was not "the choice" for mitral replacement in my city, he was great at complex surgeries which mine was (3rd OHS with excessive scar tissue). I have never regretted my decision and I would not have chosen him if he (or his staff) had not responded to all my calls and concerns.

Best wishes to you.

 

[Bridgette]

Westie's surgeon is the TOP guy in the area of NZ that Westie lives in....I was prepared to travel to Auckland to have that same surgeon but in the end I decided to go to a hospital much closer to home and have my op done by someone who my uncle recommended. He had done my uncle's valve replacement, is a kind and courteous person, AND he uses the On-x

So I am happy with my decision...but my situation is different from Westie's - my valve was pretty much thought to be beyond repair whereas I think Westie has a good chance of having his repaired, not replaced. His surgeon is a repair specialist I think, although he is said to be excellent at replacements also - he just doesn't use the On-x yet

Bridgette

 

[westie]

a really good rant and fault in our health system

a really good rant and fault in our health system

actually, i have to be carefull. new zealand is such a small place there may be few or no alternative surgeons to the man in question. in fairness, i have to stress there is every indication he is a wonderfull surgeon and a good man.

but he has ignored my emails since 06-12-2007 simply asking if he is prepared to fit me up with an on-x valve. and believe me, he has received such emails and he has no assistants etc to delete or screen them.

so does this matter? well in my trade association, the motor trade association of nz, a member would get a stern rebuke for ignoring a customers queries, no excuses acceptable! and of course the motor trade is not dealing with people facing the biggest crisis of their life represented by a life changing or threatening illness. ( admittedly car repair bills often put people into a spin)

the salient point of all this poor communication like this may be an indicator that something is seriously wrong.

one possibility is the new zealand health system where specialists/consultants (cardiologists and surgeons) work full time, or nearly, in the public health system and moonlight in the private system. hence, a situation as with this surgeon arises where he has no office, support people etc outside of the public health system. so a private and PAYING patient like me is left with a surgeon with no street or postal address; just a business phone number which switches to his home number and an email address.

so if he ignores your emails, what do you do, phone him and beg and cry? sorry, i am from west auckland, we do not do that!

the point about the above system is that these participating specialists etc are potentially so over loaded in the public system that they can not give the quality of ATTENTION one would expect as a private patient and one in some ways is disadvantaged to a public system patient. this system was introduced so the underpaid public system specialists could work privately so they could improve their income.

paradoxically, some of these public surgeons sometimes will be the best because of the huge number of operations they perform; but which one you get is always a lottery.

my first cardiologist was a self appointed saint at north shore hospital who actually had private consulting rooms, who was so over loaded with patients that he was seeing 3 at a time in a heroic relay and handing out appointments to private patients at 9.00 pm at night after a full day working at his public hospital; not to mention a callous regard for the truth and patient privacy. the second cardiologist is great though everything he says is contradicted by this surgeon. ha, that does not worry me, i think it is bloody funny!

so thats my story, i must find another top surgeon in the speciality of valve replacements, if one exists in auckland or i jump on the table and have a surgeon who can't even be bothered to reply to simple query and have him slice me in half and throw whatever valve he feels like in me; that really is a nice thing to look forward to.

sorry folks, that is just how i feel

 

[DebbyA]

Westie--
What a dilemma! My US experience has usually been obstructive or non-responsive staff, can't having imagine having to rely on getting the attention of the great man personally and then getting no response.

One thing is that this surgery business seems to have a time frame of weeks, not months, to the surgeons. Maybe as March is closer, you'll get more response? Frustrating for you, though.

I hope you get a helpful response from the on-x people--that sounds like a good avenue to pursue.

I hope you can soon find a solution you are at peace with!

 

[Swede]

Hi Westie,

He is a surgeon. In his world you are going to do something he does every day so to him it is a lot of noise getting and answering e-mails. What is most important is his surgical skills. If he is a lousy communicator it is of course bad but it is not the most important issue for you.
Easier said than done but try to get a distance to it. I fully understand how you feel - I also feel very frustrated as soon as there is any kind of unknown factor and it is sooooooooo frustrating.
Whatever you decide you will make a good choice but try to take a step back.
All the best to you and hope you will get in touch with your surgeon soon - holidays are over by monday and then he will be back in business.

 

[Susan BAV]

I'm pretty sure we have some other members here from New Zealand, Westie. Maybe do an advanced search on this site and type in your locale and see what comes up? Maybe there will be another excellent surgeon mentioned?

Perhaps you haven't heard back from your surgeon yet because he is busy researching your inquiry?

I hope you appreciate this humor: my husband is in the "motor" industry and says that, "Mechanics fix their mistakes, doctors bury theirs, and bakers eat theirs..."

This morning, I'd like to be a baker .

 

[Susan BAV]

I'm pretty sure we have some other members here from New Zealand, Westie. Maybe do an advanced search on this site and type in your locale and see what comes up? Maybe there will be another excellent surgeon mentioned?...

In a quick search, I found three other members from New Zealand. Perhaps you could send them a PM request about their surgeons? Bridgette, Comet, and WendyD

With a longer search, you may find more members.

Hope this helps.

[edit - I'm pretty sure I recall reading that Bridgette has an On-x valve.)