Patient registry at valve manufacturers

[Lionheart]

Right on Blanche,

I think everyone's in agreement that no harm was done by the direction that this thread went. In my previous post, I didn't mean to imply that JKM had done something wrong when I mentioned a hijacked thread. At the time I was trying to calm anyone that might feel that the thread was hijacked. I sent JKM a PM earlier stating as much. Sorry if my statement set off the opposite chain of events.

I agree with Johan the question that JKM asked is related to the Card discussion and I've learned a lot from it.

Blanche said it best: "Most posts are, in my opinion, hoping to be a dialog between the posters.....Not just profound words of "wisdom" .

She's right and that is what I like most about this forum. In addition to good information I also get to know the personality of many of the posters. Often that means that I smile , giggle, or laugh out loud when I need it the most.

Back to the thread.
Johan my valve number is 7-digits long so you could potentially identify (10 million - 1) or 9,999,999 different valves!

Best wishes to you all,
John

 

[Johan]

Yes, my suspicion about the number given to me was correct. It is not my valve (thanks to some undercover work, so kindly done by MENTU on my behalf). It seems that the CE bovine pericardium valves carry a 7 digit number, as also mentioned by Lionheart.

So the struggle continues!! Forward with only one goal in mind!! To overcome all and GET THAT CARD! Rattatata!! (Bugles sounding, drums rolling, pipes wailing and flags flying!!). What do bagpipes actually do? I'll probably get quartered by Scotsmen on the forum for calling it wailing. (Edit note Tuesday. Just remembered through the veils of pump head, bagpipes skirl (sp?).

JMK7 If I ever succeed in getting a card, I shall carry it with me all the time. In fact I shall ask Edwards for an implantable chip which can be read by scanners!!

On a less heroic note, I am first going to chill for a week or two.

Enjoy the festive season one and all.

 

[Bina]

Johan, I like the chill idea..........have a peaceful holiday season.

 

[Johan]

Hi All,

I am back from chilling and had a pleasant surprise, an e-mail from Edwards with my valve information and a promise that my card is in the post. It transpired that the surgeon/hospital never registered my valve with the manufacturer in the first place. Something I suspected all along.

Just before Christmas, I decided to bypass the surgeon's office and the hospital, and approached Edwards directly.They have now (after some sleuthing) resolved the problem and also gave me the contact details of both the Edwards rep in Cape Town and the Regional Office for Africa, should I have any further requests.

Thank you all for your interest and assistance.

Please take note those of you about to undergo surgery, make sure you get your valve information before you leave the hospital and get it registered yourself if need be. This advice is more for those of us in corners of the world where this sort of thing is possibly taken less seriously by hospitals..

 

[ALCapshaw2]

Did you make the Surgeon and Hospital aware that YOU KNOW they did NOT register your Valve?

Maybe you should contact your local Newspaper or TV News to 'advertise' this lack of responsible behavior.

 

[Johan]

Al
I shall definitely make the surgeon and the hospital aware by using Edwards' e-mail where they make it clear that the valve was not registered and that the serial number given to me by the surgeon's office after my enquiry, was invalid.

We have a consumer watchdog collumn in our local newspaper. They may or may not be interested in this sort of thing.

I just want to see what the surgeon/hospital's reaction will be...

 

[dick0236]

Please take note those of you about to undergo surgery, make sure you get your valve information before you leave the hospital and get it registered yourself if need be. This advice is more for those of us in corners of the world where this sort of thing is possibly taken less seriously by hospitals..

Amen to this Johan. 30, 40 or 50 years from now you may need this info, and it will be hard to come by as most of your hospital and doctor records will have been destroyed of misplaced over time. As I have posted before, this did happen to me. While enough old records were located to prove the installation of my valve, it left a number of unanswered questions concerning the specifics of "my" valve.....this is a area where you have to become your own advocate.

 

[Bina]

Johan, good work on solving this glitch. Keep the info safe.

 

[Jkm7]

Johan...... Very happy to hear your persistence and determination to get this vital information provided success.

Again, we learn no matter which country, no matter what the medical situation, we must take an active role in being our own best advocates. When we need something, we must do what we need to do in order to get it.

It is very upsetting to read that not only did the surgeon and hospital fail to register your valve but then tried to dishonestly hide that information from you. Unacceptible doesn't begin to cover that.

Well done and a valuable lesson for us all.
Hope you never have a need for the info but wonderful you have it.

 

[Cris N]

Al
I shall definitely make the surgeon and the hospital aware by using Edwards' e-mail where they make it clear that the valve was not registered and that the serial number given to me by the surgeon's office after my enquiry, was invalid.

We have a consumer watchdog collumn in our local newspaper. They may or may not be interested in this sort of thing.

I just want to see what the surgeon/hospital's reaction will be...

They may be interested if they realize that this is a medical implant - as is a pacemaker. If there's a recall due to a defect not having the implant registered could kill the patient. It's actually very important.

 

[Bridgette]

Glad you have it all sorted out Johan.

I got given my card, with the details and serial no of my valve, before I left hospital - I keep it stapled inside my anti-coagulation diary.