29yrs - valve choice and aortic aneurysm ( difficult decision due to way of life )

[W. Carter]

Very dangerous drug? Where does you research take you too? Seriously just curious. It's only dangerous for someone who's not well managed on it. For many of us it's very easy to manage. Especially if you remain on a consistent diet, then your INR stays pretty stable and you just have to remember to take your pills. I'll opt for that any time over choosing an option where I'll knowingly have to have another open heart surgery some day, maybe more than once even, no thanks, not me. Hand me the pills!

Yes it is a very dangerous drug and it can bite you for no reason, I happen to be one of those victims. I know when folks like us are required to take certain drugs we hope that none of the nightmares that we here about and read about will not happen to us but sometimes they do.

But as there is no arguing going to change anything about the drug I will let ya'll carry on and I hope nothing bad happens to anyone.

 

[dick0236]

I do not believe that warfarin will bite you for NO reason. I find the drug is very predictable and so long as I manage the drug within my INR range I have had no issues. Could a problem arise due to a drug interaction? Sure, but I have to trust my docs not to put me on drugs that are known to cause an unsafe interaction or will monitor me more closely if there is a chance of dangerous interaction.....and can you blame warfarin for that interaction.

 

[W. Carter]

dick0236 Just because you haven't had a brain bleed or stroke in inr range doesn't mean a whole lot of Warfarin users don't. There have been plenty of people in theraputical range have subdural hematomas and strokes. Some people can eat fried chicken and french fries almost every day of their life and not have clogged arteries. (thats me) Others have to have triple bypass at age 45 and eat a healthy diet their whole life. If you want to expand your knowledge on Warfarin past your own experiences read the linked journal below. It is a fact that high blood pressure in combination with Warfarin can cause a stroke or subdural hematoma.

Quote from American Heart Association...
There is no absolutely “safe” INR; many patients given OACs experience ICH with the INR well within the conventionally therapeutic range.

http://stroke.ahajournals.org/content/26/8/1471.full

 

[MethodAir]

dick0236 Just because you haven't had a brain bleed or stroke in inr range doesn't mean a whole lot of Warfarin users don't. There have been plenty of people in theraputical range have subdural hematomas and strokes. Some people can eat fried chicken and french fries almost every day of their life and not have clogged arteries. (thats me) Others have to have triple bypass at age 45 and eat a healthy diet their whole life. If you want to expand your knowledge on Warfarin past your own experiences read the linked journal below. It is a fact that high blood pressure in combination with Warfarin can cause a stroke or subdural hematoma.

Quote from American Heart Association...
There is no absolutely “safe” INR; many patients given OACs experience ICH with the INR well within the conventionally therapeutic range.

http://stroke.ahajournals.org/content/26/8/1471.full

"The data suggest that careful control of the INR, already known to limit the risk of warfarin-related ICH (intracerebral hemorrhage), may also limit its severity."

http://www.ncbi.nlm.nih.gov/pubmed/15111374

 

[W. Carter]

This is like debating with a stick. The article that you furnished says...

Although 68.0% of all warfarin-related hemorrhages occurred at an international normalized ratio (INR) of 3.0 or less.

That is at least 75% of all mechanical valve patients inr range. It is right in the middle of mine, 2.5-3.5 and my usual theraputic stabil inr is 2.7-3.0. so I could be one of those lucky 68% Warfarin users that has a hemorrhage.

 

[pellicle]

Hi

The data suggest that careful control of the INR, already known to limit the risk of warfarin-related ICH (intracerebral hemorrhage)

it is also interesting to note the category of that and title of that the above publication http://stroke.ahajournals.org/content/26/8/1471.full
Stroke:
Oral Anticoagulants and Intracranial Hemorrhage

Facts and Hypotheses


so its not written with a target audience of valvers, its written about people who are on AC therapy becase they are being treated for stroke

It makes the points related to that group:

Predictors of anticoagulant-related intracerebral hematoma are advanced patient age, prior ischemic stroke, hypertension, and intensity of anticoagulation.

The risk/benefit equation of anticoagulation for elderly, stroke-prone patients is complex and differs from that for younger patients.

So there seems to be four factors ... the article does not consider people who are not of advanced age, have no history of ischemic stroke or hypertension.So its discussing different groups to us valvers who may have some crossover. W.Carter has a history of bleeds (nose bleeds have been reported) and so he is in an entirely different risk category.

 

[W. Carter]

pellicle Don't forget the Subdural Hematoma (brain bleed) I had, 10 days in ICU and almost died taking my normal dose of Warfarin. Never had any history of bleeds just high blood pressure.

 

[cldlhd]

This is like debating with a stick. The article that you furnished says...

Although 68.0% of all warfarin-related hemorrhages occurred at an international normalized ratio (INR) of 3.0 or less.

That is at least 75% of all mechanical valve patients inr range. It is right in the middle of mine, 2.5-3.5 and my usual theraputic stabil inr is 2.7-3.0. so I could be one of those lucky 68% Warfarin users that has a hemorrhage.

I thought it said 68% of warfarin related hemorrhages were in that range not that 68% in that range had a hemorrhage?

 

[pellicle]

pellicle Don't forget the Subdural Hematoma (brain bleed) I had, 10 days in ICU and almost died taking my normal dose of Warfarin. Never had any history of bleeds just high blood pressure.

I hadn't forgotten ... it was only a few weeks ago that it was discussed.

I understood that hypertension was related to blood pressure ... which would put you in one of the risk groups mentioned above.

Best Wishes

 

[Dodger Fan]

I do not have any experience with heart surgery or a valve. I just want to share my choice with JulienDu. I am 38 years old and I chose a St. Jude's Mechanical valve. My surgeon and others here don't believe there is much difference between the pyrolitic carbon valves. They all require lower INR than valves made from other materials. On-X is always on my mind since they have a banner ad at the top of this page. St. Jude's has a long, successful track record. I would be happy with either valve. I am having AVR on Monday. I don't have an aneurysm. I have severe aortic stenosis. I am a police officer. I do not do the strenuous work that you do. However, I did consider the fact that I have been involved in several car crashes, fights, vehicle pursuits, foot pursuits, and a gun fight in which my partner was shot. I was actually at that San Bernardino shooting last month (I had very little involvement). I've been in this line of work for 11 years and have been gradually moving to less risky responsibilities (more as a result of aging than my valve disease). I am currently on a plain clothes, investigative assignment. I spend a lot of time at a desk, a lot of time in the field interviewing witnesses and suspects, and a little bit of time serving search and arrest warrants. While the risk is not as great as it was when I had 20 or more contacts with public each day, I still have a higher risk of getting injured than a lot of people. I respect that some people have had a bad time with Warfarin, It appears that is not the case for most. I am hoping for good INR management, home testing, and only 1 open heart surgery. I prefer to just have been born with a normal valve, but life doesn't work that way. Good luck with an important decision.

Fun fact. I am a native Southern Californian. I don't believe I have ever experienced a temperature lower than 19 degrees Fahrenheit. I feel like I am going to die if it gets below 40 degrees.

 

[W. Carter]

I do not have any experience with heart surgery or a valve. I just want to share my choice with JulienDu. I am 38 years old and I chose a St. Jude's Mechanical valve. My surgeon and others here don't believe there is much difference between the pyrolitic carbon valves. They all require lower INR than valves made from other materials. On-X is always on my mind since they have a banner ad at the top of this page. St. Jude's has a long, successful track record. I would be happy with either valve. I am having AVR on Monday. I don't have an aneurysm. I have severe aortic stenosis. I am a police officer. I do not do the strenuous work that you do. However, I did consider the fact that I have been involved in several car crashes, fights, vehicle pursuits, foot pursuits, and a gun fight in which my partner was shot. I was actually at that San Bernardino shooting last month (I had very little involvement). I've been in this line of work for 11 years and have been gradually moving to less risky responsibilities (more as a result of aging than my valve disease). I am currently on a plain clothes, investigative assignment. I spend a lot of time at a desk, a lot of time in the field interviewing witnesses and suspects, and a little bit of time serving search and arrest warrants. While the risk is not as great as it was when I had 20 or more contacts with public each day, I still have a higher risk of getting injured than a lot of people. I respect that some people have had a bad time with Warfarin, It appears that is not the case for most. I am hoping for good INR management, home testing, and only 1 open heart surgery. I prefer to just have been born with a normal valve, but life doesn't work that way. Good luck with an important decision.

Fun fact. I am a native Southern Californian. I don't believe I have ever experienced a temperature lower than 19 degrees Fahrenheit. I feel like I am going to die if it gets below 40 degrees.

St Jude makes good valves. The reason on-x got the lower inr approved, they were the first to ask for and get approval from the FDA. I feel like the others will be changed soon. Like you said most all valves have the pyrolitic coating, mine does too. Thats why I don't freak out when my inr is a little under 2.5. I will remind you being a police officer if you get way layed in the head it might cause a dangerous maybe life threatening hemorrhage. I know it gets old hearing it but it's worth saying again.

 

[honeybunny]

I am a police officer.

Dodger Fan, thank you for your service and God bless.

 

[neil]

interesting thoughts on warfarin on here, As most on here know ive had my scrapes with pellicle over the years lol,But we agree to disagree on a few things ha ha, I believe him to be a good bloke although we can and often do get into some scrapes lol,One thing I will give him he knows his stuff, Saying all that imo I still would not prefer to be on warfarin,thats my choice and mine alone, its just that some of us choose one thing others choose another, bit like footie teams or baseball teams, none of us are wrong we just choose different paths to hopefully get to the same goal, Bottom line we would all be in serious trouble if it wasn't for the mech and tissue valves available

 

[pellicle]

Hey Mate

... Saying all that imo I still would not prefer to be on warfarin,thats my choice and mine alone, its just that some of us choose one thing others choose another,

thanks for the wrap ... I agree with your view above. I'd prefer not to be on warfarin too ... trust me. However it was an unavoidable "condition" with the valve choice which made sense to me. Our situations are often significantly different - so in different situations we make different choices.

I never try to convince anyone of their choice (and as I'm often thousands of miles away, how could I?). I only try to correct misunderstandings and to encourage intelligent discussion to learn more about the choices we face: so we can choose in an informed way. If I seem passionate its because I care. I care that people I don't know from a bar of soap make the choices best for themselves.

Information may or may not make the difference, but to me its always better to make the choice with the facts not the myths.

Best Wishes

 

[MethodAir]

St Jude makes good valves. The reason on-x got the lower inr approved, they were the first to ask for and get approval from the FDA. I feel like the others will be changed soon. Like you said most all valves have the pyrolitic coating, mine does too. Thats why I don't freak out when my inr is a little under 2.5. I will remind you being a police officer if you get way layed in the head it might cause a dangerous maybe life threatening hemorrhage. I know it gets old hearing it but it's worth saying again.

I had a new found restraint when I was evicting a tenant from my rental condo the other week.

 

[W. Carter]

I had a new found restraint when I was evicting a tenant from my rental condo the other week.

Yes my fighting days are over too.

 

[spartangator]

Just wanted to say welcome to the forum, JulienDu. You can see it's a generous group of engaged people always willing to offer support. All the best with whatever choice you make, and we look forward to hearing updates.

 

[JulienDu]

Hello Guys,

So I just came back to see my surgeons and he was surprised that a redneck brought so many informations with him this time, thats thanks to all to all your comments here. So I wanted to share with you his opinion and see what what you think.

First of all, he told me that he does not want to experiment or try new technologie that have not been proven for a certain numbers of years on me because I am 29 years olds with 2 young kids and a very good health so he will rather stay with conform procedure.

Regarding the replacement of my valve

As discussed before, my MGradient is only 18 hg so I was wondering ( and others on this forum) why he would replace my valve instead of going for a Sparing procedure. Well I just learnt that my left ventricule is close to be dilated and that in couple years he might be dilated so that is why he wanted to use the opportunity of the open surgery for the aneurysm to replace the valve before it damages the heart. I do not know what you guys think that now makes more sense

Tissue Valve vs Mechanikal Valve

Like I said before he does not want to experiment on my case so he told me that he would not try to put the new St Jude Trifecta on me but rather the Edward Bovine which has a solid history.

However like all of you guys told me, the younger and more fit you are the faster the valve does wear out and he strongly believe that I will not be candidate for TAVRs for my next operation due to my young age. So of course he is leaning towards Mechanikal Valve

Type of Mechanikal Valve

He does use the Onyx and the St Jude. He told me that the St Jude is a very solid choice due to its history. However his preferences now lean towards the Onyx because of the cylinder that prevent the Pannus formation. For him the lower INR range does not affect his decision as he believes St Jude and Onyx can handle the same dose of INR ( Onyx marketing is however stronger he told me).

Another detail, he said that the only reason he would put me a St Jude during the operation is if my opening is too small as the St Jude fits smaller space than the Onyx. He said, a smaller valve has higher chance of damaging the heart of an active person and the risk is higher than a Pannus Growth. So if he cannot fit at least a 23 or 25 Onyx valve (I can not remember), he will go St Jude.

INR

He strongly suggest Self test at home and lean towards self management. He told me to never take for granted what the clinic says for the dosage and to always questions their decision if I do not agree. ( that unofficially mean to go for self management).

Also he told me that going crazy with a chainsaw won't be an issue with the AC Therapy so that s great and confirm what some of you guys told me

My pre-op is the 24 ( 7 hours in the hospital to get ready for the surgery) and the surgery should be a week or so later.

So I still have time to decide, but the plan is to go with a St Jude Graft and sew an Onyx Valve on it ( or a St Jude valve if my opening is too small ) as at least another open surgery, after 2 is something I do not want.

Let me know what you guys think

Thanks

 

[dick0236]

Thanks for posting. Yours is an interesting story and I had "lay person" questions about the direction you should go given your occupations and life style. Personally I think there are very few things we should not do.....altho there are a few things that may require some second thought. Good luck and stick around after the surgery......you story will be a great help to scared "newbies"

 

[cldlhd]

What was he referring to with the "not wanting to experiment with new technology"? That is a relatively low gradient and the LV is possibly starting to get dilated because the valve is leaking and if the leak was fixed it's liable to reduce in size. My post surgery peak gradient was 4 mmhg and my leakage went to zero. I had a ct angio Friday and I'm having an echo in the 19th so I guess I'll know soon how it's going in there.