2nd surgery valve selection thoughts

[Guest]

Hello. I'm back after a very long leave of absence. I had OHS April 2009 to replace bicuspid arctic valve and aortic artery. At the time I was 38 years old and opted for an Edwards bovine tissue valve. I made my decision for the tissue valve based on many factors, but the primary reason was my lifestyle. I was competing competitively in both offroad motorcycle racing and downhill ski racing and the concern about accidents and bleeding pushed me towards the tissue valve. Well, here I am 8 years later and still competing and faced with a second surgery. I don't have a I me frame yet, but I suspect within the next year months. Shame on me for not staying current on valve technology! I really thought my valve would have lasted longer and now have to decide again. Any thoughts? I have read a little about the Lapeyre-Triflo FURTIVA® prosthetic heart valve but can't seem to find much information. Obviously we all want the magic valve that will last forever without complications or medications. I'm reluctant to give up my lifestyle as it keeps me mentally young and in reasonably physically fit. At the same time the thought of a third surgery is not very appealing.

Thank you in advance!
Phil

 

[bugchucker]

The original post was from me. I thought I was signed in, I guess I'm still technologically challenged... Eager to read your thoughts.

Thanks
Phil

 

[cldlhd]

https://www.ncbi.nlm.nih.gov/pubmed/27177747
It looks great but I haven't found any info saying it's approved. It SEEMS to solve the need for warfarin due to it's softer leaflet closing and it seems to solve the longevity issue with tissue but, unfortunately, if you need surgery before it's available it's a moot point. If your choice is between existing available valves I would think it's pretty obvious. You only got around 8 years out of your tissue valve so at your age I would recommend mechanical. If you were over 60 then it's a different question.
I understand your concerns about lifestyle but you might not have to adjust your lifestyle as much as you think and I think OHS every 10 years or so will impact your lifestyle even more.

 

[erik]

You are 46 now?
If you are considering a bio valve for next year, you might check out this new valve from Edwards: http://www.edwards.com/ns20160929
Difficult decisions to make and i understand your situation. Maybe you can answer this question for yourself... "if i weren't participating in motorcycle racing, which valve would i select?
"

 

[cldlhd]

That Edwards valve looks promising but since it's new there obviously won't have long term data. Also where is it in regards to FDA approval?

 

[dick0236]

.........Obviously we all want the magic valve that will last forever without complications or medications. I'm reluctant to give up my lifestyle as it keeps me mentally young and in reasonably physically fit. At the same time the thought of a third surgery is not very appealing.

Why not just flip a coin. They will both work....but each has its own downside. Either be on a drug that could be a problem in a serious accident or resign yourself to a few more surgeries.......it's a matter of priorities.

 

[Duffey]

That's a tough call. I honestly don't know what I'd do. At the age of 46, and having had one replacement, I'd favor a mechanical valve. However, having recently witnessed head trauma up close and personal following a cycling accident my 48 year old nephew suffered, I understand your fear that you would be at increased risk if you continue your off road racing and downhill skiing. If you think you're a year out from replacement, why not take some time to do more research and give yourself more time to consider your options. In the meantime, best wishes and let us know your thought process as you go forward. Mary

 

[Superbob]

Just to give an honest answer, if if were me, I would alter my lifestyle to one not quite so susceptible to bloody accidents and go mechanical with the valve. But that's just me. Wish I could give you insight on a cutting-edge valve that can give you the best of all words, but I can't.

 

[pellicle]

Hi

The original post was from me. I thought I was signed in, I guess I'm still technologically challenged... Eager to read your thoughts.

well ... my thoughts.

You already know you will burn through a tissue valve in less than the sales pitch "up to 20 years" (*some settling of package contents may occur during shipping)

You now have to face your second surgery ... so do you want to plan to guarantee that to be setting you up for a third?

Putting valves aside for a moment you are now older ... if you speak frankly with a trauma specialist you will learn that the amount of G's that your head can take (in an impact) is much less than it was ... this is because like your skin your vascular system is less flexible and rupture is more likely.

I ride motorcycles ... we have a saying ... there are old motorcylists, there are bold motorcyclists ... but there are no old bold motorcyclists. I have heard of the deaths of some of my crazier mates ... I'm still riding (and I'm 53)

Next ... if you manage your INR properly the actual differences between bleeds will be low. If you were to select a moderin bileaflet pyrolytic carbon valve we know that the risk from stroke at INR = 2 is low ... very low ... so you could feasibly (if you were a control oriented person) allow your INR to drop to 2 (or even 1.7) before competing. That would minimise your risks.

You'll only have a problem from an IC bleed (intracranial) which implies head trauma.

Don't fall off badly and you'll be fine.

Or you can be like one of my other mates with a collection of leggo inside from snowboard injuries (and compound injuries) and need to give up the sport for other reasons ... perhaps how many years from now?

Then you can wait it out for your third surgery and make the call when you catch up to the can (down the road).

Your call

 

[neil]

would look at getting mech this time round, but its your choice, 8 years isn't great but in general what ive been told and what I hear on other forums your maybe a tad unlucky, saying that would you want to risk it again? good luck

 

[judy bee]

Good luck with your decision Phil. I'm having to make that decision first time round so can only imagine what it's like the 2nd..To what extent has the valve deteriorated for surgery to be called for ?
How symptomatic are you ? I'm a newbie here so forgive me if I haven't grasped the lingo yet..

 

[bugchucker]

Hi



Next ... if you manage your INR properly the actual differences between bleeds will be low. If you were to select a moderin bileaflet pyrolytic carbon valve we know that the risk from stroke at INR = 2 is low ... very low ... so you could feasibly (if you were a control oriented person) allow your INR to drop to 2 (or even 1.7) before competing. That would minimise your risks.

l

Interesting, I've never heard this before. Forgive my ignorance. I was on coumadin for a few months after my surgery with daily INR monitoring. My levels were all over the place, I never was able to stabilize it. Are you saying that one could be have a relatively low INR, lower risk of traumatic bleeding and still keep the valve happy? That would certainly make me look again at mechanical more seriously. Thank you for your response.

Phil

 

[bugchucker]

Good luck with your decision Phil. I'm having to make that decision first time round so can only imagine what it's like the 2nd..To what extent has the valve deteriorated for surgery to be called for ?
How symptomatic are you ? I'm a newbie here so forgive me if I haven't grasped the lingo yet..

Hi Judy and welcome. I have yet to see my cardiologist. I had an echo last week and the technician scared the crap out of me, he said he had to consult with an MD before I left. When he returned he asked about my symptoms, fatigue, shortness of breath, etc. I replied that I felt fine. He said that they were "going to let me leave, but to expect a call from my cardiologist very soon." The nurse at my cardio's office returned my call 2 days later and could only tell me that the valve is constricting, that it is serious, but not an eminent threat. I see my cardio in 2 weeks. I suppose upon reflecting I have felt a little more fatigued, but nothing like I felt leading up to my first surgery. So now I'm very unsettled to say the least, battling with a bit of depression, but I know that it will be ok, just wasn't quite ready to have to make these decisions quite so soon.

Feel free to private message me if you would like to discuss my experience from the first time around, it can be very scary preparing yourself for this type of surgery.

Phil

 

[pellicle]

Hi

... I was on coumadin for a few months after my surgery with daily INR monitoring. My levels were all over the place,

firstly please clarify "all over the place" ... also (I know its a long show) but if you have records of the doses as well as the INR I can provide better input.

For instance when I show my surgeon (on my meetings with him every year or two) this graph of my results (I have one for every year):

he thinks its an excellent result. So do I

Why because he looks at where the peaks and bottoms are and notes the range ... a clinic manager would have probably made the whole thing worse by attempting to steer every bump and making it just worse. Like watching a kid learn to sail (but clinic managers seem not to learn) and attempting to put rudder input in whenever the bow nods left or right due to swells.

Mostly the worst thing for managing your INR you can do is put your faith in a clinic (which is tragic when you think about it, cos they're the people we should be trusting) as they have dismal records ... for instance most clinics seldom get 80% in range (miserable) yet for the last 5 years I've been > 93% in range ... just going to prove that its not rocket science.

. Are you saying that one could be have a relatively low INR, lower risk of traumatic bleeding and still keep the valve happy? That would certainly make me look again at mechanical more seriously. Thank you for your response.

this graph gets a punding here (cos I cite it about 10% of my posts).
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you can see clearly that there is a range between 2 and nearly 5 that the events (either bleed or clot) were very very low. Indeed evidence is emerging from studies that well managed INR (meaning between 2 and 4 > 90% of the time) will give you about the same level of risk for a bleed or a clot as the age related general population.

Feel free to PM me as I'm happy to discuss what I have learned over the years and assist you in self managing (cos if you self manage there are no more arguments with ********* at clinics and you run your own ship). I understand in the GIMP'ed USA that its very difficult to self manage (but not impossible) because the tight collusion with insurance and health providers (to essentially tie in the money to them) makes self management unattractive (cos they don't make money out of it).

Some food for thought from my blog

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

 

[cldlhd]

I think in that scenario it's more the healthcare providers. The insurance companies would probably prefer you self test as I think it would save them money but no worries as I've recently heard that we're all going to have tremendous healthcare AND it will be cheap .

 

[jwinter]

Ultimately, the choice is yours. Ask the doctors and let them help you decide. My cardio said that if I had another tissue valve it would stenos the same as the first one, as my body just doesn't appear to want that foreign valve there. He said the body cannot do to a mechanical valve what it can to a tissue as the tissue is a living thing. Made sense to me.

My INR was all over the place to begin with but has settled in nicely. My PCP does not want home monitoring yet so no machine but found out a the Coumadin Clinic I go to that they think I will eventually be tested only once a month. I have never heard of it being that long but what do I know........I am not a doctor and never plan to be one.

Both valves have good and bad points. Pick what is best for you.

 

[pellicle]

Hi

small point

.... My cardio said that if I had another tissue valve it would stenos the same as the first one, as my body just doesn't appear to want that foreign valve there. He said the body cannot do to a mechanical valve what it can to a tissue as the tissue is a living thing. Made sense to me.

the tissue prosthetic valves are not living tissue ... they are actually not that different to the leather in your wallet or shoes ... its tissue harvested from either another animals (dead) valve or pericardium tissue

This is a typical "tissue valve"

 

[jwinter]

OK so I stand corrected. You will recall I also posted that I am not a doctor. I know that the tissue is not living but the make up of it renders it more easily attacked by the body to close it up, whereas the mechanical is not vulnerable because of what it is made of.

Clarification is good but I was just hoping to get my point across and seems like I am not always good with words. I apologize if I did not get it exactly correct and will be more careful in my posting.

 

[pellicle]

OK so I stand corrected. Y

No need to get personally offended. People read this site and take out stuff and I have seen a few people who thought they were living and asked how rejection was dealt with. Some didn't know there was even metal in them.

Like I said, small point (sheesh, it's not like I demolished everything that you said and called you names)

 

[judy bee]

Hi Phil,

Thanks for the welcome...

I'm just about to update my post and say my 2 pence piece about doing a TEE rather than trusting 2d echos.. Try and get your Doc to do one of those for you and get an accurate opinion

Will PM you ...Gosh, all of us on here must wish it wasn't so ...Things could be soo much worse I keep reminding myself.

.I didn't even consider mechanical until i came on here.

It's been reassuring reading personal accounts though.

Can just see myself getting wheeled into theater and crying out " I've changed my mind!! Gimme the OTHER one! PLEASE ! " :}

I feel a sense of humour is all important in getting through the tough times...Will PM you and show you a little trick if you like..

Good Luck Next Week...Go in expecting the worst... Things are never as bad as we can imagine them to be and if we've already imagined it, then 2nd time round is more of a breeze..(she says?)