Decision for 22 year old UK male

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ajay_22_86 said:
Thank you all for the replies and welcomes again; it's definitely good to hear from so many people and their different opinions. I think at this point I'm leaning more towards the mechanical valve option, though I'm still wary of the warfarin as anyone would be! I'm going to discuss it with my surgeon and see what they say. I also want to see if I get a choice on the mechanical valve as two people who have posted from the UK have said different things - I guess it depends on the hospital you go to!

I feel so young compared to you oldies :p Joking joking of course!
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Hi Ajay, if this helps maybe I can put your mind to rest a little bit - I live in Devon (so just down the road) and am 21 and had my Aortic Valve replaced in August last year.

If I'm entirely honest I was absolutely terrified by the whole ordeal but since having it done my standard of life, the amount of energy I have is just.. a ton better. I feel like I've been given a second chance! I use to think I was just getting lazy. Tell myself to snap out of it etc.

I went for a Mechanical Valve - no idea which one, my surgeon picked it so probably a Tescos value one :) , I take the Warfarin just before I go to bed daily. And if I'm going out for a night out, just before I go out.

Its really a no brainer unless your in to Contact Sports. Even then considering your age.. Its really not affected my life one bit, if anything its made it a 100 times better. It also pushes you to take better care of yourself, which isn't really a bad thing.

Best of luck and I am more than happy to chat about it some more if you have any specific questions. ;)

Cheers,
Ant
 
Thanks guys! I'm 99% going to go for the mechanical valve, but I still have to talk to my surgeon in about a month for the final decision. I'm also going to try and push for an ON-X valve but given my meeting is a week before my surgery date, I doubt anything will come of it.

Lol @ Ant "Tesco Value Valve" I wouldn't be surprised if they came out with one!

It's also interesting to hear how you don't feel lethargic as you used to. I'm looking forward to exercising now and a generally more active lifestyle!
 
"I went for a Mechanical Valve - no idea which one, my surgeon picked it so probably a Tescos value one :) , I take the Warfarin just before I go to bed daily. And if I'm going out for a night out, just before I go out.

Its really a no brainer unless your in to Contact Sports. Even then considering your age.. Its really not affected my life one bit, if anything its made it a 100 times better. It also pushes you to take better care of yourself, which isn't really a bad thing."

This is such a great response by Ant, love it, especially the bit "Tescos value", there's probably some truth in that too !
Also a great tip for taking Warfarin before you go out for the night too. I always take mine just before I go to bed and if I've been out for the evening and had a few drinks I'm generally tucked up in bed before I remember I've forgotten it !!
I've had my On-X for 3 months now and have litterally just got in and am passing the computer on route to the shower after a very hilly 8 mile mountain bike ride !
If you want an On-X email their rep in the UK and he'll probably get intouch with your surgeon and get selection of valves to the hospital for you ? I've got his details if you want them ?
Cheers,
Justin
 
Thanks Justin, you just motivated me to call my hospital in London :D They're going to get back to me tomorrow after the nurse has spoken to the surgeon to find out whether an ON-X is possible. They said they use St Jude normally but it all depends on what the surgeon says.

Does anyone know about the cost of an ON-X compared to a St Jude for a hospital?

I'll wait to see if my hospital give the okay for an ON-X before getting the details of the representative :)
 
My surgeon wasn't too keen as with using On-X at first because he had St Judes, Carbomedics and another I cant remember already there on the shelf waiting to be used.
The On-X rep I think was the driving force behind his deciding to use it, so it might be worth getting him on side anyway?
 
Woodbutcher said:
My surgeon wasn't too keen as with using On-X at first because he had St Judes, Carbomedics and another I cant remember already there on the shelf waiting to be used.
The On-X rep I think was the driving force behind his deciding to use it, so it might be worth getting him on side anyway?
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Who was your surgeon? Strange that we both went to the same hospital!
 
type of valve

type of valve

Though tissue valves are getting better they are thought only to last 10-15years and maybe less in the younger patient.Mechanical valves can last forever though you will be on warfarin for life.There are newer anticoagulant drugs being developed which will not require as much monitoring as warfarin.You could become a self tester without having to worry about attending an INR clinic frequently.Only you can decide and your decision will be the right one for you but you will be looking at another valve replacement in your 30's if you opt for a tissue valve.
 
Hey guys, just an update.

I had a talk with my surgeon and in his view was that he was unprepared to use the ON-X until there was a more solid base of research on it. I'm from a research background and he put it in perspective for me. In the end I was still happy to have an ON-X if there was the chance, but I took the St Jude. It wasn't a choice I was pressured in to by the surgeon =] I'm actually looking forward to my surgery, exactly one mone till I get admitted for surgery.
 
Hi Andy,

Do you mean the Hospital that's part of King's College London? I'm not at that hospital, I'm going to have it done at The Heart Hospital (UCLH) in London. It's a very good hospital and the building is very good - nothing like what I was expecting because it used to be a private hospital before the NHS bought it back.
 
barrie said:
Though tissue valves are getting better they are thought only to last 10-15years and maybe less in the younger patient.Mechanical valves can last forever though you will be on warfarin for life.There are newer anticoagulant drugs being developed which will not require as much monitoring as warfarin.You could become a self tester without having to worry about attending an INR clinic frequently.Only you can decide and your decision will be the right one for you but you will be looking at another valve replacement in your 30's if you opt for a tissue valve.
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This isn't what most surgeons are saying. All of my doctors indicated the chance for the new tissue valves to last 15-20 years, particularly in patients over 55 years. Time will tell.
 
There's just no Back and White in this heart valve game is there? Interesting you Surgeon was against On-X on grounds of research though, I've not heard that one before ?
Really pleased that you seem to have got your head around things and even looking forward to the op.
Best of luck to you.
 
ajay_22_86 said:
Hey guys, just an update.

I had a talk with my surgeon and in his view was that he was unprepared to use the ON-X until there was a more solid base of research on it. I'm from a research background and he put it in perspective for me. In the end I was still happy to have an ON-X if there was the chance, but I took the St Jude. It wasn't a choice I was pressured in to by the surgeon =] I'm actually looking forward to my surgery, exactly one mone till I get admitted for surgery.
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We've seen this kind of dismissive response by Surgeons before.

It begs the Question: HOW MANY successful Valve Replacements would he consider "sufficient" to warrant use of this (or any) NEW Valve?

And How Many Years in service would he consider sufficient to "trust" a "NEW" Valve?

FYI, On-X was introduced to the World Market in 1996 and received FDA approval for use in the USA in 2001. Over 70,000 On-X Valves have been implanted in patients in over 60 countries. It's not like it came out YESTERDAY!

Since your Surgeon is pushing the St. Jude Valve which has been around for 30 Years, I guess he wants to wait another 18 for On-X to 'catch up'. (Just a little sarcasm for his flippant response). ATS and Carbomedics would only have another 10 to go by this standard.

Are you aware that the original St. Jude Bi-Leaflet Valves were the first to use Pyrolytic Carbon for the Leaflets?

Pyrolytic Carbon was created by Jack Bokros, Ph.D., for an application in the Nuclear Power Industry. It's characteristcs when interfacing with blood make it a desirable material for use in artificial heart valves.

Jack Bokros went on to form Carbomedics in 1979 to supply material to St. Jude Medical and others for Valve Leaflets and holds patents on ATS and Carbomedics Valves.

He formed The Medical Carbon Research Institute (MCRI) to produce his latest and greatest Pyrolytic Carbon which he used to produce (drumroll) "The On-X Mechanical Heart Valves".

MCRI has been renamed On-X Life Technologies. Jack Bokros has been designing Mechanical Heart Valves for over 30 years. See www.onxvalves.com to study the refinements and technological advancements incorporated in these valves. On-X can supply you or your surgeon with their latest statistics. Contact them through their website.

As Radio Announcer Paul Harvey says:
"Now you know the rest of the story"

Tell your Surgeon.

Disclaimer: I have NO financial interest in On-X.
I have a HUGE interest in minimizing risk of Clot Formation and Stroke.
 
It could also be to do with the fact they already have a stock pile of St.Judes on the shelf at his hospital waiting to be used up ? This, as my surgeon admitted to me, was the case at Derriford ?
 
Woodbutcher said:
It could also be to do with the fact they already have a stock pile of St.Judes on the shelf at his hospital waiting to be used up ? This, as my surgeon admitted to me, was the case at Derriford ?
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That makes a lot of sense, also presumably when they buy them in bulk they will get a better price.

As far as I was, and am still concerned, there are mechanical valves and there are tissue valves and no surgeon is going to deliberately fit a valve which won't do the job adequately. I was and would be very happy to allow the surgeon to chose the brand which he wanted to fit. But that is just my opinion.
 
Woodbutcher said:
It could also be to do with the fact they already have a stock pile of St.Judes on the shelf at his hospital waiting to be used up ? This, as my surgeon admitted to me, was the case at Derriford ?
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I think this is probably the probable answer. :) And maybe the surgeon didn't want to learn a new valve install?
 
I guess a lot of doctors are sceptics really. I did try my best to push the ON-X but truth be told, I'm just as happy with a St. Jude in the end!
 
Ajay,

Once you made a decision, do not look back again...obviously something convinced you...so do fall in the torturing confusion again. Good luck with you choice and may everything go smoothly for you.

I shall keep you in my prayers :)
 
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