How do I avoid getting the wrong valve in an emergency

[Andyrdj]

Mostly a UK question this, regarding the NHS

I'm due a treadmill (endurance) test to see if I need valve replacement, or whether I can carefully manage myself for another year(s).

If it needs replacing, I want the C/E magna 3000TFX, no doubt about it.

If not, I'm sort of worried about suddenly worsening and needing an emergency replacement. Having an emergency op and not an elective one is bad enough, but I worry that the NHS will apply the old "one size fits all" approach, and give me a mechanical valve which I most definitely don't want.

How can I avoid this? Is there some way of having your choice recorded on your record? It's made more difficult by the fact that the valve is non-standard, so I'll have to make a good case for this particular tissue valve, although if push came to shove I'd be quite happy with the mosaic, which one british girl on this site has had via the NHS.

Ideas please folks! We all know it's a difficult choice, but it would be awful to end up with the one you don't want!

 

[Lynlw]

the only thing I could suggest is to contact your card and surgeon in both phone call and writing and make them aware of what you want. please don't drive your self nuts w/ the what ifs it doesn't do any good altho I know this myself, i still worry so easier said than done lyn

 

[Phyllis]

Lyn gave you the best advice- let your wish be known to the surgeon and cardio by phone and in writing.

 

[Janea]

Maybe this idea is weird but what if you you got one of those ID medical bracelets and put on there that in an emergency you want a tissue valve, and specifically mention the one you want.

 

[Ross]

Just as Lyn said, only please be aware that you cannot always have what you want. Sometimes things just are not compatible, so you need a back up plan. I think you know this already though.

 

[Marguerite53]

Well, hm. Maybe you should elect to do it sooner than later since this is a particularly important choice for you. That would be my first notion.

I talked with an EMT (Emergency medical tech....ambulance person) once about medic ID and they often look first on a person's driver's license. I like the idea of the alert bracelet or necklace. And Maybe you could attach a note to your ID somehow.

Good luck on the stress test. Let us know how it goes for you.

Marguerite

 

[Andyrdj]

Ta folks

Ta folks

I will indeed. Regarding the "back up choice", I haven't seen any indication that any particular model would be contraindicated for me. I could, I suppose, have a card listing my valve choices in order.

But I would like to have the surgery electively. I'm still not too bad (can pick up girlfriend in my arms, though she's only 7 1/5 stone!) but fed up of being careful. I long for the old days when I used to pump serious iron, but failing that being able to run around and play sports would be nice.

 

[OldManEmu]

A few issues

A few issues

You need to determine with the Cardio what valves are available through the NHS, are all of them available at all hospitals that perform cardiac surgery? In Australia public hospital networks have supply contracts with only a limited number of valve manufactures who supply at a set price. It may very well be the same in the UK as I believe hospitals are run by a multitude of NHS trusts. Once you have determined what is available I would get it documented with my Cardio and then make sure I had their business card on my person at all times. If there is any other patient records in the UK such as a hopital file I would have it documented there as well.

 

[Dustin]

Andy,

You could consider a medical dog tag with the words: " Medical Emergency Protocol: No mechanical valve implants allowed!"