Strugglng with my decision

[pellicle]

Why didn`t you undergo a Ross procedure? or a Mechnical Valve? (If I may ask you)
Erik

Who are you asking?

 

[dick0236]

I wanted to ask you, by the way, for your personal experience using anticoagulants (warfarin). I am really surprised how long have your valve and your body resisted the anticoagulants. Congrats!
In your 46 years of experience with a mechanical valve, what would you say was the biggest difficulty for you? Havent you had problems with aneurysms or "pannus" in-growth? I am a bit fearful regarding the side effects of Marcoumar in my life.
For the history you have, it may seem that at my age you would have done the same procedure and not the Ross.
Erik

Before, or after, my surgery, the doctors did not make a big deal out of anti-coagulant use.....they did not even mention that I would have to take it for my lifetime until shortly before being hospital discharged and they just told me to take the pill and get it checked every month or so...unless I say blood in my urine(that has happened only twice and a long, long time ago) I have never experienced any side effects from the drug as far as I know. My only problem was as a result of a stroke in the mid '70s that was probably due to my non-compliance. That taught me to treat Coumadin with respect and since that time "I take the drug as prescribed and test routinely(currently self-test weekly)".....and I have not had ANY more ACT problems. I have never had a "pannus like" problem or any issue with an aneurysm. There were no procedures, like the Ross, tissue valve, etc. in the '60s.....and in hindsite, I am glad they where not around. My biggest problem was "accepting" that the valve would allow me to live out a nearly normal life....now I look back and see how foolish my fears where.....but as the saying goes, "we get too soon old and too late smart". Have your problem corrected and then live your life.

 

[pellicle]

****, out of interest when did you start self testing ... if you can remember that is ;-)

Was it expensive then?

 

[dick0236]

****, out of interest when did you start self testing ... if you can remember that is ;-)

Was it expensive then?

I only learned about self-testing about 6 years ago.....after joining this forum. I had/have a lot of resistance from local doctors and my insurance carrier about self-testing and was required to get into leasing plans with Phillips and Alere....which I found to be a nuisance. Last year I bought my meter/strips on line without using insurance and find the cost less than what my copays used to be.....about $4.25/test.....but I still have to go into my doc's for a monthly test by their tech.

 

[-andrew-]

How old were you at that time? And why did you decide the Ross procedure?

I was 26 when I had my first surgery. As to why the Ross, I've tried to explain my reasons best I can in recent posts - see wwwphp?41998-My-Experience-with-the-Ross-Procedure.valvereplacement.org/forums/showthread. and http://www.valvereplacement.org/forums/showthread.php?42022-ROSS-Procedure-Talk&p=542733#post542733 Basically, I didn't want to take on the responsibility of taking warfarin indefinitely, had confidence in my surgeon and was happy to take on the increased risk. So far at least I've been lucky and both of my surgeries have been without complication. So the prospect of a third does not cause me too much worry. But I'm also acutely aware of the risks and how these increase with age and number of re-ops, so I'm likely to try to make surgery number 3 the last and go mechanical.

So you were happy to accept the higher surgical and re-op risks, in order to avoid taking Warfarin? Wow, you were very brave!

That's how I like to view it! But many friends of mine have a slightly less flattering view!

End of the day, neither option would be wrong and you'll adapt to live with either.

Best of luck with the whole process,

Andrew

 

[pellicle]

****

thanks for the info. As you know I'm a newcomer to self testing having only done it since 2011. Being a colonial we know nothing of the vagaries and intricacies of the American Health System and its regulations. So (for me at least) its always good to learn.

For some reason I thought you had been self testing much longer.

i wonder when it started?

Anyway, thanks again

 

[Erik Sichra]

Born with heart murmur 1959
Aortic valve repair 1979
Aortic valve replacement 2012 with tissue valve

Yes repair lasted 33 years
My advice is to listen to your body, respect the advice of your cardiologist and surgeon
Really happy with my choice been advised should last 15 to 20 years so average 17 years
I know it could be shorter
But I am very very happy with my choice
Be grateful of the choices we are given of life saving and enhancing surgery
And live life to the full

Wow, that was a long period to last for a repairment! Congrats!

Yes, as you say, I am grateful with the choices we are given of life saving!

Why didn`t you undergo a Ross procedure? or a Mechnical Valve? (If I may ask you)

Regards!

Erik

 

[Erik Sichra]

So the prospect of a third does not cause me too much worry. But I'm also acutely aware of the risks and how these increase with age and number of re-ops, so I'm likely to try to make surgery number 3 the last and go mechanical.

Heys! Hi! Thanks for the reply!

When you say that there`s a possibility to undergo a 3rd surgery, what do you mean? The second one was to due a aortic root dilation, right? What did the surgeon do at that time? Just replace the root? And when you mean you`d go mechanical, you mean to replace your aortic or pulmonar valve? Thanks!

 

[Erik Sichra]

In my experience, doctors who specialize in one area seem to make all their decisions from within that specialty's filter. If I went to an allergist, the conclusion would have been that my murmur was some kind of allergic reaction to something. If I went to a cardiologist, the conclusion would be that I had a bileaflet valve. I hate to think what a urologist or proctologist would have said.

Although that`s funny what you say (regarding what would a urologist or a proctologist say to you!), it`s true!

The reason that I'm mentioning this is to get an idea of why the cardiologists recommend one thing (mechanical valve), and the surgeons recommend something else (Ross procedure). It may be helpful to look at long term survival rates -- or, at least, at the likelihood that the Ross may eventually fail, while the long term prognosis for mechanical valves is pretty good. I suspect that if you ask surgeons who are more experienced with mechanical valve surgeries than they are with the Ross Procedure which they recommend, you may get a 'mechanical valve' suggestion (unless the surgeon wants more 'practice' doing the Ross procedure, and you're a suitable practice subject).

I could not agree more with one my friend! Up until now I have already visited 7 doctors, 4 cardiologists (who suggest me to go mechanical) and 3 surgeons (2 from them suggested me to do the Ross procedure, one of whom has done an average of 25 Ross procedure in the last 5 years, and the other one over 200 Ross operations since 1994; and the 3rd one suggested me to go for the tissue valve, meaning that in the near future there would be the possibility to replace this tissue valve with a less invasive procedure). Now you can imagine how confused I am now with so many different opinions!

I'm not advising one versus the other -- it's a decision for you and your doctors to make -- but it is certainly worth considering the choice from all angles. (For most of us, warfarin isn't a big deal -- and with the availability of meters that enable us to monitor our own INRs, the risk is even lower than it was when **** or I had our valves implanted).

You are right! And I know you are not advising me; thanks!

 

[Erik Sichra]

Hi ****!

thanks! Don`t you have worries when you:

- go to the dentist?
- injure yourself (that means, when you have an inflammation)?
- blood has to be taken from you (for whatever analysis)?
- shave?
- are sick?

Do you adjust your Warfarin dosis in these occasions?

Furthermore, I love playing basketball, and being on anticoagulants maybe isnt such a good idea when dealing with this "contact sport"...I wonder...

Thanks!

Cheers!

 

[pellicle]

...and the 3rd one suggested me to go for the tissue valve, meaning that in the near future there would be the possibility to replace this tissue valve with a less invasive procedure).

and if I go to the Casino there is the possibility that I will make millions on blackjack too ... you can't deny that possibility ... but will I really become rich?

Of course the odds vary between the two events, but seriously the less invasive procedure looks less likely the more you look at the details and the specifics of it.

 

[Erik Sichra]

Is it too difficult to ask not being reoperated and not having to take anticoagulants...I wonder :S

 

[dick0236]

Hi ****!

thanks! Don`t you have worries when you:

- go to the dentist?
- injure yourself (that means, when you have an inflammation)?
- blood has to be taken from you (for whatever analysis)?
- shave?
- are sick?

Do you adjust your Warfarin dosis in these occasions?

Cheers!

I am sure there have been times in my past that these things did give me "pause"....but not too a major degree.
+I have had a lot of dental work and can't recall any problems. Most recently, a couple years ago, had two molars extracted without going off warfarin....no problem.
+I've always been active and have not let warfarin use interfere with my activities. I have had a couple injuries that required sutures and I did not bleed excessively. However, I am more mindful and careful when I use a rotary saw, chain saw or ax.
+I am very squeamish about having blood drawn from my veins....thankfully the finger sticks give me NO problem.
+My career required me to always be clean shaved and I shaved with a safety blade raiser and, infrequently, if I got in a hurry, caused "nicks" that where a pain in the A--.....I just learned to be more careful. Now I shave with a Norelco with NO nicks....but not as clean shaven.
+I am more conscious of dehydration when I am sick....but, other than that, colds, flu, etc. give me no problem.

Warfarin has been given a bad rap.....and my belief is that the majority of problems are caused by patient misuse or ignorance. If I take it as prescribed and test routinely, I have no problems.

 

[pellicle]

However, I am more mindful and careful when I use a rotary saw, chain saw or ax..

Scene from Monty Pythons "Holy Grail" with the Black Knight comes to mind here ...
www.youtube.com/watch?v=zKhEw7nD9C4 (warnng: coarse language, bleeding, strange humor)

 

[dick0236]

Scene from Monty Pythons "Holy Grail" with the Black Knight comes to mind here ...

That is what comes to my mind around power saws....not warfarin bleeding. I saw a man, when I worked construction as a teenager, almost cut a leg off when a rotary saw "kicked back" on him.....and I've had a healthy respect for those tools, before and after warfarin.

 

[-andrew-]

Heys! Hi! Thanks for the reply!

When you say that there`s a possibility to undergo a 3rd surgery, what do you mean? The second one was to due a aortic root dilation, right? What did the surgeon do at that time? Just replace the root? And when you mean you`d go mechanical, you mean to replace your aortic or pulmonar valve? Thanks!

In the second op the surgeon only replaced the root - both valves were left in place. The most likely scenario is that my aortic valve will need replacing sometime in the future. Exactly how long seems to be impossible to predict - I'd be happy with 15 years but will aim for 50! I believe replacing the pulmonary valve can be done more routinely by minimally invasive surgery (according to my surgeon - I haven't done any research). But I'm hoping my pulmonary valve will go the distance and never need replacing.

 

[pellicle]

****

Know what you mean. Back when I was doing my electronics training we shared space with other trades. So there were warning posters all over the shop showing (quite graphic ) images of accidents with everything from grinders through to band saws.

I always use those tools with something between fear and anxiety. I reckon its when you get complacent you'll loose something. My wife and I were renovating our house and I was doing all the electrical and carpentry.

A hammer on the wrong nail still hurts before and after warfarin...

 

[Erik Sichra]

Hey my friends!

it´s been quite some time since my last post. Before my operation I kind of disappeared from the scene, but now I am back. I finally decided myself to undergo the Ross Operation. I value the thing that I dont have to take anticoagulants, and that I dont have to watch out everytime I play, say, basketball, one of my favorite sports. I have accepted the idea of being operated again. Only time knows when. Thats why I try to live day by day, trying to get as much as possible from my Auto- and Homograft. In a couple of weeks I am going to rehab, where I expect to be at full potential. Now, after almost a month after my OP, I feel good. I still have pain on my muscules principally (from my right upper back and neck). I also try to be as careful as I can regarding my breastbone and the wound. I try not to stretch and carry things. Luckily my mother is taking care of me know. I feel like a child again when I see and feel how my mother pampers me when preparing dinner or helping me lay down. Thank God!

Now I just have to be patient, a virtue that, if you dont have it yet, time will force you to learn...

 

[escargome]

Eric, Best Wishes to you. You did the 1 right thing for yourself. You decided what was best to make you feel more in control. Good job, cause truly there is no right or wrong answer, only what proves right for you.
Now on to the subject of mom, as a mom I know without a doubt that no matter how old my son is, he is still my baby and pampering him is what I do (It's my job
Anyway, take care and recover at your own pace.

 

[Duffey]

Eric, thanks for letting us know that you've had the procedure and are doing all right. We worry when someone quits posting and doesn't let us know the outcome. Best wishes,
Mary