I think I might have chosen. For now.

[Alerion]

Hi all

I have been trying to get closer to a decision on what valve/procedure type I feel most comfortable with. I?ve read voraciously on the different options and the ramifications of each including re-ops, ACT, surgeon choice, etc. And I?ve been grilling people here and elsewhere about their choices.
I have to say that I?m so sick of thinking I?ve found the best option, then reading a little more and finding new stuff that undermines my choice. All of a sudden I?m back to square one. Sound familiar?

I think I found a direction but please feel free to check me on this.

If you go with a delicious steer or pork valve, you will be hungry again in ten or so years. Statistically, chances are you will need a re-op and, from what I?ve read, neither a jovial attitude nor a tolerance for really disgusting hospital food can make this procedure more pleasant. It is, however, a cut and dry affair. You go in, get ?er done and, assuming no complications, you are left to your own devices until you need to do it again at which point you should have learned enough to bring your own food.

Synthetic valves have a better record with longevity and, to some extent, afford the recipient a futuristic melding of man (or woman) and machine - a bionic cache only a select few humans can claim. Of course, you will be on ACT for the rest of your days and, while taking a pill or two a day is the merest of things, that?s not what puts me off about it.

The drag here is that you never stop being a patient. Ever.
You have to monitor this stuff because too much is bad and too little is bad. And here ?bad? can conceivably be catastrophic. Fortunately, the process has been made reliable and fairly easy to monitor but the fact remains you have to monitor this stuff closely.

Now, I have read a LOT from folks who take the stuff. And many of my family members take it too and I?ve spoken with them. I think I understand how they feel. They have accepted it (wise and healthy choice) and they are right.

But, I?m torn. I?ve had a degenerative eye disease since I was young and it has cost me most of my vision in one eye. Basically I can?t see squat out of my left eye. I?ve had two cornea transplants and two subsequent corrective surgeries to fix my left eye ? no dice.

But? I have gotten used to it. I learned long ago to judge distances without stereoscopic vision. I am accustomed (to the point of reflex) to snapping my head to the left while driving or riding my bike. I?ve learned to do this without looking as though I?m insane or having a seizure. I design and build boats as a hobby and at both the drafting board/computer and in the workshop I can work easily and I have not yet lost any body parts on the table saw.

My point is that from my perspective, having a blind left eye is no big deal. I get along fine. It can be dangerous if you?re not careful, just like Warfarin, but it?s totally manageable and I never even think about it anymore.


So I know I can absorb the hassles of anti-coagulant therapy and I know I can deal with it. But for now at least, I have the choice to not be a patient the rest of my life. From this side of the operation, I see value in being free from doctors, clinics and hospitals for as long as possible (other ailments notwithstanding).

So I?m leaning to a tissue valve. I?m not leaning very far, but I seem to have a negative knee-jerk reaction to remaining so deep in the health care system.

Naturally I could change my mind at any moment and go with a synthetic valve (That bionic clicking noise must be a great ice-breaker) and that?s what I hate about this. Nothing is clear-cut except that you die if you don?t decide.

Marketing weenies (of which I?m one, sorta) keep saying that what consumers want most is choice. Ha!! This choice is going to give me a heart attack!

And of course I?m still looking into the Ross procedure and the ON-X ACT-free trials?.

I think I?ll go make a Xanax martini.

 

[needinfo]

And I thought I was the only one cofused on a choice....martini? your buying right?

 

[kfay]

Congratulations to you for researching your options, realizing what risks you are willing to live with, and making a decision that is best for you. As you know, there are pros and cons to both, so once you make your decision and are happy with it, don't look back. Good luck to you.

Kim

 

[Freddie]

Alerion, you've made some very good points and I sympathize for those who have this decision to make.
I really didn't have an option; my surgeon made the choice for me, stating that "I don't think you want to have this done again, so if I can repair it I will if not we'll go with the mechanical".

I understand one has to weigh the good and the bad, but if you have found a surgeon can you not ask him which procedure he is most comfortable with?

It took me about 6 months to get used to taking this "stuff", as I was one who lived without taking pills. Yes I do have to monitored every 2 weeks, but besides from that I haven't seen a doctor for almost 5 months (touch wood).

In the beginning of your recovery it is important for a doctor to keep tabs on you for the first 3 to 6 months, if there no complications you should be home free.

Good Luck

 

[Superbob]

So choice ain't what it's cracked up to be, right? I think you are doing a great job of sifting through the pros and cons of the tissue and mechanical options. It is a tough decision, no doubt, and an intensely personal one. I think the factor ultimately influencing me most was age -- I was 63 at time of surgery, and calculated that if my tissue valve lasted a long time, it might be the only one I ever need. Secondarily, I had in mind a concern (rightly or wrongly) about my own klutziness in handling the med management. But the calculation about re-ops is a major factor, too. At your age, you might face a couple of re-ops with a tissue.

So I am not trying to influence you, just empathizing with the struggle that comes with choice. Still, it IS good to have a choice. Either choice -- or any choice -- that keeps you going with a good quality of life is a very good choice. So in the final analysis, make your choice and and be happy with it.

 

[Ross]

The drag here is that you never stop being a patient. Ever.

Well don't want to bum you out, but Mechanical or Tissue, your still going to be a heart patient that needs monitoring. It's with you for the rest of your life regardless of which way you go.

 

[ALCapshaw2]

It sounds like you are getting the hang of it Alerion.

Don't forget to make a Plan A *and* a Plan B.

MY plan A was for a Bovine Pericardial Tissue Valve with NO Plan B specified. Well, once the surgeon 'got in there' he decided he needed to put in a St. Jude Master's Series Mechanical Valve instead.

I was disappointed, but have adjusted to Coumadin management and get on with life. Fortunately, the valve I received is exactly what I would have picked at that time (with my years of hindsight to back me up). Today I would go with On-X as first choice and the St. Jude Master's Series Valve as second choice (for MY set of circumstances).

As you are learning, it is all a Very Personal Choice!

Eventually many (most?) get comfortable with one preference (usually the one whose negative attributes they can best live with).

Hopefully you too will zero on a first (and second) choice.

How's the martini ?

'AL Capshaw'

 

[Alerion]

Dang it Ross, That's just the kind of thing we undecideds hate to hear!
But with a tissue valve, the intrusion of the medical world into your life is less, no? And the monitoring is them monitoring you every 6 months or so to check up on you, not you monitoring your own blood bi-weekly to make sure you don't have a stroke.
Anyhoo, like I said, in the next 24 hours I will pbly change my mind again a couple of times - I really don't want Two operations!

 

[escargome]

Dang it Ross, That's just the kind of thing we undecideds hate to hear!
But with a tissue valve, the intrusion of the medical world into your life is less, no? And the monitoring is them monitoring you every 6 months or so to check up on you, not you monitoring your own blood bi-weekly to make sure you don't have a stroke.
Anyhoo, like I said, in the next 24 hours I will pbly change my mind again a couple of times - I really don't want Two operations!

I think that the monitoring by the medical world depends on you and what other medical issues you may or may not have. I had my AVR surgery May 2008, saw the surgeon once after that 4 weeks post surgery, he gave me the thumbs up. Off the the cardiologist at 6 weeks post-op, another EKG and echo, again thumbs up from the cardiologist. Says unless you feel something you don't understand or worries you see you in July of 2009. So far so good, I'm getting back into some kind of regular exercise besides walking and feel good. So do some more hanging on the fence if you like. The bulb with your own personal decision will light when it is ready...

 

[Phyllis]

Alerion, whatever choice you make, it will turn out to be the right one- never look back and just enjoy the new found health you will have when this is over.

 

[Ross]

Dang it Ross, That's just the kind of thing we undecideds hate to hear!
But with a tissue valve, the intrusion of the medical world into your life is less, no? And the monitoring is them monitoring you every 6 months or so to check up on you, not you monitoring your own blood bi-weekly to make sure you don't have a stroke.
Anyhoo, like I said, in the next 24 hours I will pbly change my mind again a couple of times - I really don't want Two operations!

Not trying to confuse you or throw you off any. It's just simply that once your discovered, your marked as being heart patient for life no matter what. Yeah they'll do echos every 6 months for a while, then go to annually, but they will always pay close attention to your heart and any changes. That is just something we all have to live with, which is still better then not living.

 

[skeptic49]

Ross has it exactly right: no matter what valve you choose, you are now a heart disease patient for the duration. Receiving a tissue valve will not change that, nor is it a guarantee that you won't have to do ACT. If you develop AF... BINGO...you're on ACT. I think you have to get used to the fact that you are in this for life...it ain't ever going away...and figure that into your decision making process.

Best wishes,

Jim

 

[Lynlw]

Dang it Ross, That's just the kind of thing we undecideds hate to hear!
But with a tissue valve, the intrusion of the medical world into your life is less, no? And the monitoring is them monitoring you every 6 months or so to check up on you, not you monitoring your own blood bi-weekly to make sure you don't have a stroke.
Anyhoo, like I said, in the next 24 hours I will pbly change my mind again a couple of times - I really don't want Two operations!

I understand what you are saying. My 20 year old son is definately a heart patient, he had his first surgery at 10 days and his 5th OHS last year. as well as a couple heart related surgeries. He had a pacemaker for 6 years and hated it (but accepted it and was glad it kept his heart beating) because it reminded him about his heart with the monthly phone checks ect. and since he isn't on any meds he really doesn't think about his heart unless he is having problems or it is appt time. It was malfuncting a couple years ago so they took it out, and luckily he wasn't in heart block at the time so they did not replace it. He will most likely need another one in the future, but he is happy not to have it for a while because he personally feels more like a "patient" when he has it and the things that go along with having a pacemaker.

 

[dick0236]

Not trying to confuse you or throw you off any. It's just simply that once your discovered, your marked as being heart patient for life no matter what. Yeah they'll do echos every 6 months for a while, then go to annually, but they will always pay close attention to your heart and any changes. That is just something we all have to live with, which is still better then not living.

Ross is right on. Once you go under the knife for OHS, like it or not, you will be followed routinely by the medical profession. They do that to protect your health AND to protect themselves from your lawsuit if something happens to you while under their care. I haven't seen a surgeon since I was discharged from the hospital and only see my cardiologist every two years or so. My PCP and I monitor my INR on a regular basis. There is a PLUS to having a regular, ongoing INR relationship with my PCP. If he, or she, can manage my INR without freeking out and making stupid changes to my Rx, I feel confident that he, or she, can manage my other health needs or complaints in a professional manner......and I have changed PCP's who flunked this test.

The decision to go "mechanical" or "tissue" can be a BITCH.......but ya' gotta do one or the other. They both have pluses and, unfortunately, they both have minuses.

 

[catwoman]

There is no valve choice that is without any risk or potential for additional medical care. And you do have to make a choice -- or let your surgeon make it for you; which route do you want?

No matter which route you take, you will be a heart patient for the rest of your life. With a mechanical, you take the warfarin and run INR tests; if you're lucky, you get a home tester and your life is pretty much normal. I'm in this category and just see my cardio once a year.
If you get a tissue, you may be looking at a countdown toward a re-op (and again, maybe not). But you still require follow-ups.

My father-in-law had his first MVR in late 1978 or '79. I remember R.C. making the 130-mile round trip to Fort Worth TX for his annual cardio visits. He was hearing, "You're doing fine," so he stopped making the trip.
Because of that, he almost bought the farm in late 1989.
His valve (porcine) needed replacement. He was in congestive heart failure and was retaining about 20-30 pounds of fluid. He also needed an aortic valve replacement. He also needed a quad CABG. And from what his surgeon said, his aortic root probably needed repair (I remember hearing "His aorta is falling apart in our hands"). His surgeon did not think this 74-year-old widower would survive the operation, but he did. It was a very long recovery.

My point: No matter which valve you choose, you will be a heart patient for life. You have to make a choice Whatever your decision, accept that it was the best choice with the information you had in the time you needed to make a decision.

 

[Lionheart]

Alerion,

I also struggled with the tissue / mechanical valve choice for months. When I consulted my surgeon with my concerns he identified which valve would better address each concern. The problem was my concerns were all over the map and the valve type he suggested varied depending on which concern was the greatest. He was very thoughtful and helpful and spent a lot of time with me, but eventually he had to go to the surgical theater and said "Just let me know which valve you want before you go to sleep." Meaning that I could wait up until the moment they put me under in the operating room before I had to let him know which valve type I wanted.

That was too much pressure and before he left our consultation I made a decision and said that was what I wanted. The following week before my surgery I lived with that decision and my gut hurt the entire week. Finally the day before surgery I emailed and called the surgeon and his staff to change my mind to the other type of valve. It was such a relief once I had made my final decision. I knew it was right.

I think it helped me to live with my first decision for several days to see if it fit and I found out that it didn't. During the whole process I came to realize that unless there is something that compassionately drives a person toward or away from a type of valve then either one is a good choice, or put another way there is no wrong choice. I really believe that either valve would have worked for me and I could have adjusted to the requirements of either valve. Your decision will come and it will be correct, give it time.

Take care,
John

 

[Alerion]

Ross is right on. Once you go under the knife for OHS, like it or not, you will be followed routinely by the medical profession. They do that to protect your health AND to protect themselves from your lawsuit if something happens to you while under their care. I haven't seen a surgeon since I was discharged from the hospital and only see my cardiologist every two years or so. My PCP and I monitor my INR on a regular basis. There is a PLUS to having a regular, ongoing INR relationship with my PCP. If he, or she, can manage my INR without freeking out and making stupid changes to my Rx, I feel confident that he, or she, can manage my other health needs or complaints in a professional manner......and I have changed PCP's who flunked this test.

The decision to go "mechanical" or "tissue" can be a BITCH.......but ya' gotta do one or the other. They both have pluses and, unfortunately, they both have minuses.

Hey all
I should rework this a bit. I am fully aware that they aren't going to do an OHS and then fergit me. Thank god. That's not what I mean. It's not what they do to me, it's my perception of life. Of course I know they'll be monitoring me regardless of the valve I choose and I may very well need ACT, tissue valve or no, but that is not the same, for me, as monitoring a critical drug regimen with serious consequences. Don't get me wrong, I am eternally grateful that they keep an eye on you and I would have some serious abandonment issues if it were otherwise.
Like you say "If he, or she, can manage my INR without freeking out and making stupid changes to my Rx".... Those kinds of consequences are what worry us noobs who haven't undergone what you guys have been through yet. I don't want to be an active patient with an ongoing treatment that, to avoid serious health issues, requires regular testing or visits to a Dr or clinic. From what I understand, tissue valves, if successfully implanted, obviate that for the duration of their useful life. Not that I'll never see a doc again - of course I will.

And if a synth valve is the better way, naturally I'll take it and deal with the rest.

But for now, I'm still leaning to a tissue valve . I'm going to ask my doc about the Ross procedure too. I want to know everything. If there are peeps out there who have had that done and have lived with it for a long time, I'd love to hear from them. I read some posts here that made me pause but I've read stuff elsewhere that makes it sound like THE answer. Frustrating process altogether!

I really and truly don't fear operations anymore (of course, I've never had an OHS, which is of course an entirely new world of hurt.) but I certainly would prefer to avoid repeats and ACT - the Ross promises both, more or less. I still can't tell if it delivers or even if I'm a candidate.

I hope I don't sound stubborn or worse, selfish, but finding your way through this maze is one big slap down after another and I'm starting to see what you guys mean about it being a personal not clinical decision.

I've read here often that "Whichever way you choose, it will be the right one"
I don't know. I once bought a GMC Gremlin and I thought that was the right choice. Maybe Ill wind up flipping a coin with my surgeon!

Happy trails and thanks for your guidance. I would be seriously crazy if not for the help I've found here.

David

 

[ChouDoufu]

it's not being stubborn, it's being responsible. this is a pretty important decision that
you have to live with for the rest of your (hopefully much extended) life. the last thing
you want is some stranger who doesn't fully understand your needs to make the
decision for you. you won't know what bias the doctor has, but isn't telling you, which
affects schler choice. maybe schlee thinks artificial parts are against god's will, or
porcine isn't kosher, or beef is high in cholesterol, or using cadaver parts is immoral.
you might think it silly, but you don't know. this is your decision. whichever way
you choose, there's no going back, so research as much as you can. be stubborn
in that you won't go with xxx valve just because it's one surgeon's favorite.



****gremlins....didn't they destroy half a dozen gremlins filming 'terminator'?

 

[MaryC]

I've read here often that "Whichever way you choose, it will be the right one"
I don't know. I once bought a GMC Gremlin and I thought that was the right choice. Maybe Ill wind up flipping a coin with my surgeon!

David,
This is a difficult decision and one where you keep second guessing yourself. I was hoping for a repair but gave my surgeon my backup choice. I may need another surgery one day and I am not sure I will go with the same valve choice.

I have to say, you really have an interesting way of describing the inner conflict with this decision. Your Gremlin reference really got me because my Aunt Maree had a Gremlin and that was the car I used to take my test for my driver's license. I am convinced it caused me to totally mess up on the parallel parking!

Best wishes on your upcoming surgery.

Chris

 

[zipper2]

Alerion, From reading all the posts your hard at work on decision.

Good for you i was in such denial 16 years ago,pushed till i had to

go in emergency and ended up with carbomedics,for the aortic,

never even realiszed the warfarin till surgery was done,willi did,but

didn't listen and understand it was for life. Felt,but have never

regretted the choices my Doc made.

2nd surgery on thursday for mitral and this time was decided on st.jude

with my surgeon. i can imagine this is a difficult decision for you

and wishing you all the best,which choice you make is right for you.

Good luck with your surgery .

zipper2 (DEB)