Would you?

[Elcarim]

This is a question that haunts me. I am fairly young (30yo) and have a mechanical aortic valve and pacemaker. I know that there will probably be many advancements made in my lifetime regarding my condition.

Reading the thread about valves being grown from stem cells has prompted this post. I wonder if, after surviving two AVRs already, I would put my hand up for another if it meant I could have a 'natural' valve and be off the coumadin.

How would the risks weigh up? Perhaps if they could fix my pacing node and remove the need for the pacemaker also..? But what if there was yet more damage from another surgery? What if this time I got a lethal infection or had a stroke?

And how would it feel to go from being a person with a chronic medical condition to being a normal person again with no artificial parts? Would it be an easy transition? Or would it be as disturbing as becoming a 'heart patient' was in the first place?

Do others with mechanical valves think about this?

 

[Magic8Ball]

Interesting question, not sure what i'd do.

I don't think i'd volunteer for a surgery if everything was ticking along fine as i don't 'feel' restricted in anything i do other than alcohol....and this isn't a bad thing.

If something went wrong and they were in there to perhaps stent or clear scar tissue and the option was there to remove the mechanical and stick in a valve grown from my own stem cells at the same time.....it would be a tempation but still not sure if i would take it.

I think that although there are loads of developments happening we are all reluctant to be 'first cab off the rank' and when it comes to the crunch i certainly like to see a good long list of successes before signing up.

I don't think i'd want to be the first to have a bentall's but was happy to be the xxx thousanth....

 

[ALCapshaw2]

Cardiologists and one surgeon recommended Waiting and Watching (MV Stenosis) rather than jumping into a 3rd surgery, citing the RISK of 'going off Coumadin'. (No one wanted to say STROKE, but I 'got the drift'.)

Surgeon's argue the options of going through the sternum for a 3rd time (bleeding risk cutting through scar tissue seems to be the concern here) vs. doing a thoracotomy through the ribs on the right side (i.e. 'fresh meat').

One surgeon laughed and said "RUN" when asked what he did with High Risk Repeat Patients exhibiting lots of Scar Tissue (and Radiation Damage).

 

[Karlynn]

I wouldn't go in to replace a perfectly good mechanical valve to get off Coumadin. It's not a nuisance in my life and is just a pill a day, and a finger stick every 2 weeks. I have yet to have to go off it for anything (although that may be coming up in a few months). If this valve ever goes bad - I would consider tissue (depending on my age) just because if it would last the rest of my life - it wouldn't hurt to not have to take Coumadin. But that would be the only reason. A tissue valve heart isn't any healthier than a mechanical valve heart. We all still have to be concerned about infection and scar tissue.

We have had one member here who intentionally had her mechanical valve replaced with a tissue valve, due to cerebral vascular issues. She was having repeated brain bleeds and the doctors finally decided they needed to get her off Coumadin. I suspect that this was a case where she already had an issue with neural vascularity and warfarin "highlighted" the problem. We haven't heard from her in quite a while, so I'm hoping that the replacement has made her life less complicated.

The other thing to consider is that the more surgeries the heart has, the more sensitive it becomes to electrical disturbance. It would be a real bummer to have a VR for the purpose of replacing a mechanical with a tissue to get off Coumadin - and then wind up back on it due to a-fib. (Which would be my luck. )

 

[Ross]

Absolutely not. I've had all the surgeries my body can take. It won't do anymore.

 

[Lisa in Katy]

I firmly believe "Don't fix it if it ain't broke." The benefits would have to outweigh the risks, and if my mechanical valve was functioning well, I wouldn't dream of it. There are too many people on this site who had surgeries that were supposed to last 10+ years who ended up back in the OR within a year. Things can and do go wrong. Coumadin is not that big of an issue for me.

 

[Superbob]

I think I would follow the "If it ain't broke, don't fix it" philosophy in that case, also (taking into consideration all that we go through with surgery, the risks, etc.) . If it was "broke," then what you described would be an option to consider. Just my two cents.

 

[Bina]

Jodie, this is an interesting thought.....timing seems to be key. If I were to ever find myself facing another OHS, once again, my age would be a huge factor in choices. Age 50 and 60 mean different things to me. Coumadin has not been an issue so far, but as I am getting older I find myself thinking of "natural" valves.

 

[Elcarim]

Thanks for sharing your thoughts.

I hear what a lot of you are saying about only getting a valve changed if they had to go in anyway. That is probably a realistic way to look at it.

I guess it is a bit sad that even with no real complications in the two years since my surgery I have still not really come to accept my condition. Even with all the interventions I have had I still hold the dim hope that one day I will be 'fixed'. But reading your replies I realise that I am not restricted in what I do, managing my ACT is not that much of an inconvenience and I should be thankful that I am fit and healthy.

When I woke up from my second surgery I remember being overjoyed to have survived and relieved that there was a good chance I would not have to go through it again.

In the long run if one day my cardio was to turn around and say 'they can do XX now and they are getting a lot of good results, perhaps you should consider having it done' then that would be the time to think about another procedure. I suppose no matter what changes over time it is always going to be risky having your heart messed with in such a way. Maybe they could grow me a whole new one...