Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin

The BIG Question...MHV or Tissue valve? The bogeyman = Warfarin

** Before you read this blog post in its entirety let me reiterate that this decision (MHV v tissue valve) is an incredibly personal (and difficult!) decison and that their are nearly equal advantages to having one procedure or the other. This decision is ultimately made between yourself and your medical professional and should be based primarily on their professional opinion and recommendation.

Background: It appears that their 'seems' to be quite a spirited difference of opinion going on that has been underway (albeit very much under the radar) for some time between surgeons/cardiothoracic specialists choice/advice between the US and the UK/Europe over what is best for patients - MHV or tissue valves. Of course - in many cases of course the patients condition prohibit one or the other being used and the decision is quite clear cut. 

However, unless it is an emegency procedure where you simply don't have a choice (Type A Aortic Dissection or similiar!) and your procedure is scheduled some time in the future you normally have the opportunity to thoroughly research this decision. By this I do NOT mean that you are trying to verify/justify your medical professionals opinion but I believe that you do have the right to equip yourself with as much information as possible to help you decide.

From recent anectdotal information both online and offline as well as other sentiment that I am seeing/hearing it 'appears' that in the US tissue valves are more strongly promoted than MHV because of the issue of warfarin being a real lifestyle negative and difficult to control/live with, risk of bleeding from injury etc etc. The opposite (or a much more relaxed opinion) 'appears' to be the case in the UK and Europe in that MHV's seem to be more widely promoted (accepted) than in the US and that their also appears to be a much more relaxed attitude and acceptance that warfarin is NOT the 'bogyeman' that is is promoted as being in the US.

Further evidence of this seems to exist re tissue valves being overall preferred over over MHV's with the latest Q2 financial results from the major companies supplying both types of valves (predominately US) appearing to indicate that the sale of MHV's is static at best and in most cases down on last year and previous years in the US but slightly ahead in the UK and the US.

If you have read this far - yes - their is an "elephant in the room" here.  The question is begging.. How MUCH should we ask of our medical professionals regarding what valve is best for us if their is any sort of bias/not full understanding of a lifelong warfarin regime by the medical profession? I have heard/seen (and continue to) a LOT of anectdotal evidence of doctors and medical professionals simply not understanding warfarin at all - here in the UK as well as the US. 

I do not want to also get into a debate for other reasons for the choice of one type of valve over the other (MHV v tissue valves) and the much espoused comment for tissue valves which is being repeated "mantra like" in the medical community (which only have an average life of 10 years or so) that "medicine is advancing at such a rate that in 10 years or so their will be a whole new fix for replacement of tissue valves in 10 years" (note: even with new stent technology - only applicable for an incredibly small percentage of valve replacements now and in the future). 

Don't also forget the enormous cost of continually applying new medical technology v the current 'chest crack' surgery for valve replacement ..somewhere the medical care system in whatever country has to draw a line under what it can afford in order to do the job professionally with least possible cost and what the patient insurance covers. (Another subject not to get into... :-) ) 

Personally - It is 10 years next year since my MHV implant  - years which have flown by... and I for one am INCREDIBLY thankful I don't have to undergo THAT chest surgery and recovery ever again... as I would if I had a tissue valve.

Back to the main point of this missive which is not actually about one type of valve over the other, but how/what the medical profession really understands/thinks about warfarin and MHV implants. It is my PERSONAL opinion that their is a quite deep lack of REAL knowledge of warfarin as it applies to MHV patients both here and indeed worldwide.

To this end, I believe that we as the MHV Support Group have now reached the necessary stage of maturity that we should now form an overall mission statement along with a set of short and long term objectives, with foremost in our list of objectives the ability to draw up an extensive  "Living with Warfarin"  document that I hope can help be a living document that can help newcomers to warfarin as well as overcome the myths and prejudices surrounding warfarin both in the public domain as well as being hopefully a respected source of information in the medical community.

I would therefore welcome feedback on this blog and the formation of a mission statement and in particular the Living with Warfarin section.

Last, but not least, I am delighted and honoured to announce that we (The MHV Support Forum) have become a foundation member of ACSMA  (AntiCoagulation Self Monitoring Alliance) of which members include ROCHE, Atrial Fibrillation Charity, AntiCoagulation Europe, Childrens Heart Federation STARS (Syncope Trust And Reflex anoxic Seizures). Our aim is to promote self monitoring of warfarin and in the process of doing so help to demystify and promote wafarin for what it is - a safe and effective drug (when taken within the proper guidelines) that in most cases minimally impacts on our lifestyle. 

This is obviously a major post and milestone in the timeline of the MHV Support Group and will gather many comments and observations. All are welcome so please don't be shy - have your say so we can get a real concensus flowing here! 

Cheers

 

Graeme Archer

 

Founder MHV Support Group  

     
  

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Comment by Graeme on November 4, 2012 at 12:21

Richard..

a very thoughtful, introspective, humourous and honest post. Thanks! I think (know) that Germany and other EU countries are a long way advanced with their understanding long term of anti-coag treatment and phenprocoumon IS a 'better' (subjective sense) drug than warfarin for MHV. Problem is cost. Warfarin is so cheap it is bought by the ton (literally) for next to nothing.  Phenprocoumon is a much more costly drug and switching the over 2 million users of warfarin in the UK to phenprocoumon would be simply too prohibitive with the cost to the NHS. Also warfarin is relatively bomb proof for older patients with DVT who are the main users of warfarin.  Our (MHV Support Group) being part of the ACSMA group is proving to be a real eye opener.

ACSMA has been set up to promote self testing (with warfarin) as better long term proposition as if over 1 million people (out of over 2 million on warfarin here) moved to self testing with the tester paid for by the NHS it could save an estimated £10 million plus a year to the NHS AND free up patients life away from having to visit a clinic every two weeks or so plus lift travel restrictions yada yada etc... However it has caused some interesting ripples as many Drs and NHS don't want to see change like this for many reasons...so we will be hoping to drive cultural change here through political support and public awareness...

In closing I think your mission statement viz:
  "To provide the necessary information to enable people to make an informed decision on the course of their treatment - based upon other's feedback, personal stories and general quality of post-operative life."  

is ideal!

 

I'll let this sit for another few weeks or so and see what else rolls in then take it up if no changes or further suggestions...

take care and nice to see you back online again!

cheers

 

Graeme

Comment by Richard Deal on November 3, 2012 at 11:36

Graeme,

this is an interesting one!

i got the impression from various discussions i have had with my "medical team" and feedback from conversations that my significant others had with them too; that provided there is a decent chance of you not living long enough to justify a bionic part then bovine or porcine was the only real justifiable option. again we should be careful to caveat justifiable here as simply an actuarial decision predominantly controlled by a bespectacled bean counter who is 55 years of age and doesn't know what the inside of a woman's thigh looks like, let alone the inside of a pub. admittedly, since moving to germany i have developed a hideously bad impression of accountants - but it has to be said that your quality of life, or quality of care is not something that should be trusted to a spreadsheet jockey, or statistical guru.

i have issues with taking medication - each pill reminds me there is a part of me that doesn't bloody work and is a little high pitched scrape down the blackboard of my predominantly peaceful life - but i have no issues with having operations - pretty perverse, eh? right at the very beginning of my journey i heard my heart valve lying in intensive care and had no idea what it was. i "feel" it and "hear" it coming from the small of my neck, so i wondered what the mcfly it actually was - and after discussing with my doctors and finding out it was a mechanical heart valve i have to admit i was disappointed. i wanted a pig part, not something that caused me to take more pills... 4 years down the line though, and i can safely say if there is a pill i am willing to take it is my "rat poison" because i do not want to be cracked open again and have babe's valve removed to be replaced by porky's. the concensus on MTBR in germany is anywhere between 15 and 20 years for animal valve replacements with an increased frequency of check up towards the beginning of this period. there is no really juicy data for MHVs but the impression is 40 years or so, with the benefit of only having to replace the moving parts, without creating new scar tissue. the last thing i need when i am 45ish is another 6 weeks of paranoia and pain. thankfully my surgical team made the right decision on my behalf.

in rehab i was pretty much the youngest "heart" patient and everyone around me was well into their 60s and those that had insufficiency or needed a replacement valve (either aortic or mitral) all had porcine valves fitted. i was the only one that ticked, i was the only one to have to take thinners and was the only one who actually made a marked recovery during the time i was there. maybe my age helped, who knows?

i self test, so i don't need to get blood taken every fortnight, and i know when something has happened that is "out of the ordinary" and can adjust my dose and monitor accordingly - so i am in effect my own doctor when it comes to dosing up with marcumar. i do not take warfarin and never have - phenprocoumon (the active ingredient in marcumar) is a longer acting metabolic derivative of warfarin which in germany is regarded as being more stable for long term thinning treatment and also less of a tax on the liver. it is probably more costly than warfarin, which explains why i couldn't get it on prescription in the uk when i forgot to stock up before a visit - but it is the drug of choice for long term anti-coagulation treatment here. also those of us that don't exhibit any psychological "fog" are sent for training on how to use the self tester and end up with a prescription automatically to reduce the load on costly, and dare i say precious, nursing and clinical resources.

if i were to suggest a mission statement at this point it would probably be:

"To provide the necessary information to enable people to make an informed decision on the course of their treatment - based upon other's feedback, personal stories and general quality of post-operative life."

unfortunately the word unbiased is nowhere to be seen - as we all tick, thump and like you say LOVE IT! i don't think a mission statement "to give people the information to force their clinical treatment down the mechanical route" is something anyone would like to wear as a badge of pride, or necessarily helps us with what we are trying to do as a support group.

phenprocoumon is a safe and effective drug from personal experience - warfarin is a cheaper drug, is about all i can say!

sorry for the long and windy brain fart, but you have my opinion now!

hope all is well,

r

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