AVR surgery scheduled in 3 days! ANY AND ALL ADVICE WELCOME!!!!

[Trinalovescats]

Hi,

I'm 32 and had MVR and Tricuspid Repair on May 3,2016.I have an ON-X valve and am on Coumadin.I don't mind the ticking,I'm just grateful to be alive!

I wish you luck...although I was sedated for 6 days since I was really serious.Hope your recovery time goes well.

 

[pellicle]

I didn't realise you emailed the articles to me, until this morning. Thanks!!!

welcome, I thought you'd dig the Vit K2 stuff too

GELIA: '... the incidence of moderate and severe TE and bleeding complications was comparably low in all INR strata and more or less within the so-called background incidence reproted for an age-related "normal" population.'

yes, quite favourable isn't it ... the levels they reported of "events" is being found else where too ... its just they were the first ones I've read who actually try to stop the boogey man dangle of "warfarin" (insert hammer horror organ chord) and bring people back to the simple reality of : as you get older you're more likely to have a bleed or a stroke.

As you can imagine there is very little data on what is the age related incidence because general population people are not studied as much as those on drugs or after surgery.

 

[Mellyouttaphase]

Hi Julie,

I am 31 and had a pulmonary valve replacement in July this year (a little different but similar recovery). I mulled over this choice for years and had privately decided to have a tissue valve which turned out to be he option my surgeon presented to me.

Now that I have physically all but forgotten my surgery (and often emotionally too!) I am totally at ease with this choice but I am not going to lie - the first few days especially coming out of surgery I hit a huge wall of dispair thinking: what have I done?!

I am putting it out there - I would be USELESS at remembering my meds. The idea of the ticking would freak me out but I am sure it is something that I could get used to in time and would grow to rate as a rad extra part of me which is good because at some stage down the track, I may choose that option. I don't really know why I wanted tissue over mechanical, maybe it's just one of those weird inexplicable things.

My surgery was a re-op and my team had extra challenges with scar tissues and adhesion. I also wonder if this played a part in a pericardial effusion I had to go back to theatre to have treated. Re-ops aren't fun. Not trying to freak you out, sorry!

Ps. 5ft 1, somewhere around 48kg. I consider myself small-framed.

 

[cldlhd]

Obviously it's a personal choice but I wouldn't put a lot of weight in the bad warfarin experiences you've read on a website. I feel that people usually go on a site like that if they have a problem. You don't call the cable company to compliment them on a great picture you call when it's out or on a more close to home example I work for a local water authority and customers don't call to compliment us on the nice clear water coming out of their tap but if it's rusty you can count on it. I'm 47 and had my surgery a year and a half ago. My valve was repaired, mild leak and no stenosis , but if the repair wasn't going to cut it I selected mechanical as my backup. As for valve choice my surgeon used St. Jude a lot but would put in an On- x as he worked with them also and that was my choice. I'm not trying to persuade you just giving my perspective.

 

[neil]

hi just out of interest whats does your surgeon and cardio say? whichever your choice will be a good one, look at different sites and get a general feel, its a hard choice and is very dependant on whats best for you as we are all different, as they say ones mans meat another mans poison , I went tissue as didn't want to be on warfarin, saying that some don't mind, good luck

 

[Juliemoon]

Just home from blood work. It's down to the wire, and I still can't decide. My reservation about tissue is that the valve he uses, the Trifecta GT, has no studies on longevity b/c it is newly approved. But I guess he wouldn't be using it if he didn't have confidence in it?


neil My surgeon says mechanical b/c of my age, but that it's my choice. He will use tissue even thought it's not "what he wants to do." He isn't the friendliest guy. I just called the office to ask about changing my mind, and possibly the date, until I reach a clearer decision, and his nurse said if I do that he would problably drop me as a patient. Wow.

So it's either decide now, in the next hour or so, or go elsewhere.

Thanks again to everyone for all the info. Stay strong, and be well.

 

[pellicle]

Just home from blood work. It's down to the wire, and I still can't decide. My reservation about tissue is that the valve he uses, the Trifecta GT, has no studies on longevity b/c it is newly approved. But I guess he wouldn't be using it if he didn't have confidence in it?

Correct

There are no studies because by the time such are completed they have made a newer compound that they claim will last even longer than the old ones (which usually last as long as the older ones anyway).

So basically just use the data on existing studies of older valves and assume you will for broadly in that data set somewhere cos there really have been no "oh gosh" changes in materials science, just minor iterations of improvement

Suggestion: flip a coin and if you feel uncomfortable with that outcome it means you preferred the other.

For what it's worth you aren't coming across as wanting mechanical so pick tissue

 

[cldlhd]

Is it possible to postpone your surgery and give yourself more time to think about it?

 

[Juliemoon]

cldlhd It is now, b/c my surgeon dropped me. I called to try to reschedule, because I had been feeling badly physically, as well as still confused. His nurse called me back and said he would no longer follow me. Feeling very defeated right now, because he was the only heart surgeon in my city who would accept my insurance. pellicle I'm just seeing your post, but I really wish I would have flipped that coin.

 

[pellicle]

Julie

...It is now, b/c my surgeon dropped me. I called to try to reschedule, because I had been feeling badly physically, as well as still confused.

Well good riddance if you ask me. The guy sounded totally inconsiderate.

This gives you time to think, and you will find another surgeon for sure. The decision will influence your future for years to come.

These things often happen for a reason...

Best Wishes

 

[Paleowoman]

What an unethical surgeon that was Julie. You're best rid of him. I would have had no confidence in such a person - how can someone like that be allowed to practice medicine ? Surely your cardiologist can come up with a better surgeon somewhere else - I would hope he will also not refer patients to that particular surgeon again. I'm sorry you are also constrained by your insurance.

 

[Warrick]

Maybe you burst his god complex bubble..

 

[Agian]

You're better off without him. What a prick of a man.

 

[cldlhd]

I know travelling for surgery isn't appealing but maybe you should look into high volume highly rated hospitals then see which ones take your insurance.

 

[MrBig]

Consider this. Tissue valve= 12 weeks cardiac rehab and 6 months to full recovery.
Mechanical valve= 12 weeks cardiac rehab, 6 months to full recovery....lifetime anticoagulation therapy.
Personally I can do rehab standing on my head. Reop does not concern me. Remember there is no guarantee you will not need a reop with a mechanical valve. Don't try to figure this out with your brain. This one must be done with your guts. Go with your gut feeling. To hell with what your Dr. says. My cardio and my surgeon both disagreed with each other on which valve to go with. Good luck.

 

[cldlhd]

Reops might not concern you but I think most people feel differently on that one.

 

[Juliemoon]

Thanks for the comments and support. He is reputed to be the best heart surgeon in Louisiana, but also known to be an *******. I can agree with the latter sentiment now, and will have no evidence of the former.

He told me a couple of times that my chances of dying were greater than surviving, and that AVR needed to be done quickly. But it was always beyond difficult to get any info out of him. He also knew I had limited options b/c of insurance.

Maybe it was so long ago when he took the Hippocratic Oath that he has forgotten it. Especially this part:
"I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife of the chemist's drug."

Again, thankful for all of you for being here. I continue to gather useful info and understanding from your posts.

 

[pellicle]

Consider this. ...Remember there is no guarantee you will not need a reop with a mechanical valve. .

But there is a guarantee you will need one with a tissue of if you are not an oldie

 

[Juliemoon]

Does anyone have any info on the long term effects of coumadin therapy? I've seen that dementia is more frequent, and also calcium build up in arteries. I recently read something about vitamin K2, which helps to deliver calcium to your bones rather than your arteries. Anyone taking this, or familiar with it?

 

[pellicle]

Julie

Does anyone have any info on the long term effects of coumadin therapy?

FIrstly I want to emphasise I am not telling you what to do or making a suggestion. So to answer your questions there is no evidence (after what, 60 years of use) that coumadin has any side effects. There is one study where rats fed ten times a lethal dose or farfarin, countered with massive injections of an antidote (Vitamin K) developed problems. It would not be possible for a human to eat that much warfarin (and get litres of vitamin K injections)

If the statins that eveyone loves and the anti-depressents everyone reaches for were subject to as intense and enduring scrutiny they would be banned.

In contrast the issues of warfarin (coumadin) are quite simple and plain:

• being on warfarin may complicate some prodecures and other drug usage
• failure to monitor INR (which takes me on average 5 min per week) may leave you at greater risk of stroke or bleed
• long term recalcitrance (not taking it) can lead to a valve obstruction by a thrombus. This was a reoperation driver but now is treated with a PICC delivered therapy to disolve the clot. It is proving quite effective.

Basically noone loves warfarin because it was very poorly managed in the past (I can elaborate on that if desired) and its an extremely low profit margin drug and essentially cuts whole swathes of the medical system out of the picture.

Evidence is emerging that well managed INR will put you in no different a risk group than the normal age related population. So the bad wrap of warfarin is due to mismanagement and a section of the medical community who is uninterested / unmotivated to review their out dated views.

IF you are elderly or if you (like mellyouttaphase) are just too irregular that you couldn't adapt to the regime of taking your pills (and they don't even HAVE to be on time, I occasionally delay mine by 6 or so hours if I'm out) or if you are struck with sickness at the thought of hearing your own heart beat then you should pick a tissue for your own peace of mind.

Also if you are over 60 there is a chance you will kick the bucket before needing a reop because its possible that they can last 20 years. If you are under 50 then one reop is in your "cards" and if you are under 40 then two. Its up to you how you interpret the risks of surgery, surgeons don't like to play that up (although some do as the one I have mentioned in my blog post ... PM me if you want a copy of the recording of his talk that was published on the Mayo Clinic, it has been removed because SWF is no longer supported by browsers).

I originally did a Biochemistry degree (double major with Microbiology) and I've researched the ******* out of this ... and hand on heart that's the bottom line as I see it and a few years here has not changed that with any new evidence.

People love to counter that having a mechanical valve is no certainty of avoiding a reoperation. That is true however having a tissue valve in certain age groups is a certainty that you will need a reoperation. PLUS almost every case where a reoperation would be needed for a mechanical valve (predominately aortic aneurysm) then such would also drive the reoperatoin of ANY valve.

The above points are not in dispute with any surgeon or cardiologist. I encourage you to print them out and take them and ask questions. Some may lean one way or another but the points above stand.

dick0236 , any sign of dementure yet?

Lastly with respect to K2 there are a number of studies but they are quite inconclusive at this stage. The major interest I see emerging is that taking K2 may make your INR more stable if you are one who's INR is unstable. I was an unstable INR "client" until I gave my clinic the bird and took management under my own roof. This has meant that I'm in range 97% of the time (almost unheard of at a clinic who often boast 80%) and I have total freedom of movement. I can travel as I please and just take my coagucheck with me.

Here I am in Finland after having sold my house in Australia.

Best Wishes