Re-operation.. should it be a deal breaker?

[Alerion]

Hi Jane- I'm not really worried in the sense that I'm dreading the operation. I just realized that the main arguments against the two valve types weren't represented equally in posts I'd read.
Everyone recites a variation of " well at your age you wouldn't want a tissue valve because that would mean re-op".

Well,so what? I've read plenty on the risks of re-op and grilled a couple of docs and it seems to me to about equal out with the long-term ACT risks.

I've read some stories good and bad about the operation Choudoufu is apparently living in sybaritic luxury, the lucky stiff (literally!)

Tobago2 - Thank you for the post. A good reality check for me. I infer from your posts that our attitudes are similar in some respects and I appreciate the candor.

Geckley
Thanks for sharing your experience. It sounds like you had a hell of a time. Your situation, so complicated and dangerous, has given you a lot of experience - something I don't envy.
I hope that my situation, which is simply an aortic valve replacement, does not become any more complex than it presently is.

Marguerite - Thanks to you too. I am glad your recovery was so good and it's good to hear you have no regrets. But I think you're right-on when you say almost nobody has regrets. I can't imagine a more frustrating situation than having gone through this only to find that ACT actually sucks and puts a huge crimp in your lifestyle or that your new tissue valve is wearing out after only five years. I have read of this occurring but it is rare. I think most people make the choice, do the op and wake up in recovery, fully accepting their choice. That is the wise thing. I just hope to make the choosing itself a little easier with this kind of thread.
Btw, I've only posted 30+ times but I'm so freakin' long-winded, I feel it's only fair that my posts should count double.

Jkm7 - good for you! I am really happy to hear it's working out. I'm curious - Two OHS in four years.. did the first make you dread the second? I'm just curious. It is a relief to hear, no matter how often, that the anticipation is far worse than the actual ordeal. Thanks again

I realize that it's different for everyone. My point was that we all have some common ideas of pain and discomfort (we all know what it's like to burn our hand on the stove for example) and those should inform our decisions as much as our personal biases (I don't like the idea of ACT, for example).

Thanks again for sharing your experiences folks. I've had some private emails from friends and folks here on the forum who are watching this thread for the same reason I started it: they're wondering how bad the re-op is and what recovery is like because they're leaning to a tissue valve. Everything you all write is helpful to us noobs and is so very appreciated . Thanks again

 

[kfay]

I have a tissue valve, not by choice, but because it is in the tricuspid position and they typically don't like to put mechanical there because of clotting issues. This was my second surgery. I am 45, so in all likelihood, I will have at least 2 more surgeries (at least I hope to live long enough to need them!). I honestly can't say if I had had a choice, which I way I would have gone.

I was very scared going into this surgery. I was only 17 when I had my first and I just really didn't remember it being that big of a deal. I wasn't afraid of the pain, I was afraid I wouldn't make it. As for the pain, I just didn't really experience that much. I, too, was on fentanyl the whole time I was in the hospital (8 days). That probably had something to do with it. I was, however, extremely uncomfortable for several days. I had to keep my chest tubes in until the day before I was discharged because I had so much drainage. If it weren't for that, I think I would have been much more comfortable and discharged earlier. The night that they pulled my chest tubes I was able to sleep on my side and stomach, that is how little pain I had.

I got home on a Friday and went to my son's soccer game on Saturday. That about wore me out, but day by day, things got easier and I felt stronger. Unfortunately, you won't know if you are one who does well with the surgery until after it is over and then it is too late to change your mind one way or the other. Looking back, I'm almost glad that I didn't have a choice because I think it would have driven me crazy.

Kim

 

[Bina]

David, what is your wife's opinion of all of this?
My husband said he would never choose to go through this again if it could in any way be avoided.
1. Too much risk...... 2. I'm not an easy patient

 

[Jkm7]

David..... Yes, when I learned I needed the second surgery, I went through the anxiety, stress and nerves most of us suffer. My cardio just about literally took me by the hand and helped me along through that month of waiting. He was surprised my valve went bad so fast and I think he felt a bit of "it's not fair" as he knows I follow his (all my doctors') orders meticulously. He sees DH and me out walking many an evening as his office is not far from our house and we often walk after dinner when he is on his way home. My blood work is a cardio's dream and my diet very healthy etc But, yes.... I was very anxious.

The odds are very strong the new generation of tissue valves may last considerably longer than the older style AND there is a strong likelihood within the next 15-20 years or sooner, many replacements will be done percutaneously. We can only pray that is the case. Imagine so many of us having replacements without cracking the chest or cutting between ribs. It has already been done successfully on some patients too ill to survive traditional OHS.

Only you can make the choice. And no one pretends making that choice is easy.

I certainly wanted DH's opinion and he could not have been more supportive that whatever choice I made would be exactly the one he would choose. We talked about it a lot but he really wanted me to be sure I made the choice that was right for me. When he knew I was firm in my choice, he then told me he agreed.

If I learned I needed to have my chest cracked a third time, Yes..... I know I would again have that pre surgery anxiety and nerves but would go forward. I know this is so survivable and do-able. My immediate post surgery recovery was much faster the second time. I drove in just barely three weeks with cardio's approval. However, no question the long term full healing was close to 9+ months. I was very functional and active and 'back to my life' but knew I was still finishing up on my healing.

 

[Alerion]

Bina - that is so important a question - I thank you for reminding me to address the issue and I'm ashamed I've not mentioned her sooner.

The short of it is, Heidi's preparing for anything. She of course will support me and respects whichever decision I make. She (not having had your hubby's experience) does not want me to place her convenience above my own idea of what is best for me, but of course it is undeniably a part of the calculus and rightly so. I have had the awful experience of being care-giver to my dying father and he died in my arms. I have, at times, been more selfish with this issue than I should have been and I should certainly know better.
But Heidi's been great and we're doing this together, period. I have tried to get her to check out threads here and elsewhere, but she has a good idea of what she's up against, she's waaayyy stronger than I am, and I know she'll seek help if ever she feels she needs it.

Jkm - Thanks for the very reassuring perspective. For a long while it's seemed that a mech valve was my only real choice and I appreciate everyone baring so much of what are difficult memories to put the issue in perspective. I might still opt for a mechanical valve but I am certainly favoring the Tissue.

It's good to hear your husband backed you up on your second go round. I know Heidi will for me too. Now, maybe on my re-op, if I make it there, she'll have some choice words about tissue valves and hospitals....

For now, our complete lack of experience is probably making it easier on us but may very well come back to bite us on the ass in the coming weeks.

Thanks to all of you for helping with what is proving to be the hardest thing I've ever done - making up my bloody mind!

 

[Alerion]

Kim - Thanks to you too!

"Looking back, I'm almost glad that I didn't have a choice because I think it would have driven me crazy."

Ohh yeah. I can relate to that.

 

[Lionheart]

I just realized that the main arguments against the two valve types weren't represented equally in posts I'd read.
Everyone recites a variation of " well at your age you wouldn't want a tissue valve because that would mean re-op".

Alerion.
I don't think that valve patients are drawn to a valve as much as they are repelled by the associated risks of the alternative. When people say "you don't want a re-op" it's not because they think you should avoid the pain but rather that you should avoid the complications that can go along with the surgery. No doubt some of those complications can temporarily or permanently reduce your quality of life and obviously who wants that? Avoiding re-op drives many people to mechanical valves.

Most people with tissue valves take no offense at the desire of mechanical valvers to avoid another surgery. But on the other hand, I think tissue valvers find it more difficult expressing why they choose to avoid a mechanical valve because the reasons to avoid a mechanical valve may cut to the core of many of the problems that people with mechanical valves experience on this site.

Here is the reasoning behind my choice but please realize that I am not trying to convince you to make a similar choice. About one year ago I was in your shoes. It tore me apart trying to make the right decision because I felt like I had incomplete information about the true risks associated with each type, but especially the risk of mechanical valve clotting and its associated risks from ACT. I was 53 and eventually selected a tissue valve. I felt that Warfarin had the potential to limit my lifestyle by putting me at risk if I continued some activities such as auto racing, backpacking, or whitewater rafting in very remote locations. Swamping a raft in the Grand Canyon and loosing your warfarin could be life threatening. Granted you could create redundancies to reduce the risk but it was something on my mind. I also considered that there was a reason why they suggest tissue valves in older patients and it was to avoid ACT. Well I plan to be "older" some day so why would I want to be on ACT? From my perspective, all other things being equal, selecting the mechanical valve meant that my heart condition would be chronic meaning that I would have to manage my condition daily (i.e avoiding the potential for clots due to the mechanical valve). On the other hand I felt that selecting the tissue valve meant that I would have less risks given my lifestyle and that management of my condition would not be a daily task. Instead I felt that a tissue valve would defer my risk to the future as an acute risk of re-op, which I was willing to accept.

Did I make the right choice? Yes, but I would say the same thing if I had chosen a mechanical valve.

Do I ever have second thoughts? Yes, I have some concern about whether I will have adequate insurance in the future to cover a second surgery at a leading hospital.

Does a re-op scare me? Yes, a little, in a PTSD sort of way.

Am I happy with my choice? Yes, Except for visiting this site almost daily, I don't think about having an artificial valve and I don't have any restrictions.

Would I make the same choice again? Yes, in a heartbeat, even though my surgery had some serious bumps.

Should you make the same decision? No, sorry but you have to make your own decision and after you do, never look back.

Take care,
John

 

[Alerion]

Hey John - Well said!
I agree that once you make a choice, you should , must, accept it. That is the only way to be happy.
I also agree that it's a little harder for potential tissue-valvers to justify (as if they have to) their leanings.
I think , though, that it's because most people's knee-jerk reaction to OHS is that's it's worse than all possible alternatives. Who in their right mind would prefer to have their chest sawn open again when all they really need do is take a pill or two a day?

I just don't buy that. I will not make a decision based on a fear of the unknown, which is why I started this thread.

Heidi and I will be agonizing over this decision for the next few days and if I decide to go with an On-X or St Jude mech valve, it will be because I learned that it was right for me and my post-operative lifestyle expectations, NOT because another OHS down the road intimidates me.

thanks John

 

[Ross]

In my mind, everyones first thought should be to minimize, if at all possible, the chances of having more surgeries. This surgery is no walk in the park and while I'm not trying to scare you, your going to feel like you were hit by a truck larger then anything you've ever seen. I liken it more to a landfill compactor with the huge cletes on the wheels.

Each subsequent surgery will be harder to recover from due to various reasons.

The one and only true thing none of us can tell you is, how yours will turn out. You could be a text book, in/out patient and you could also have the nightmare from hell happen like I did. There is just no way anyone of us can predict that.

Being that I nearly died during both of mine. I'm in no way in favor of anymore. It's a stated and simple fact for me, I will not survive another major surgery of this type. The Doctors have all said that to me.

 

[Karlynn]

My lead up to surgery was hell (lots of symptoms, lots of arrhythmia, and a life totally ruled by not feeling well - and I had 2 small children at home.) My recovery was long. If I'd gone with a tissue valve, I would have been having it replaced about the time my children were in high school - absolutely the busiest years of my life. I was glad to not have to worry about an impending valve deterioration, surgery and recovery at that time.

2 things - people will tell you that going mechanical will not guaranty you won't have to have another surgery - this is true. But the % is very small. People will also tell you that going tissue won't guaranty you won't have to be on ACT. That is true as well, but the %, again, is very small.

The type of valve you choose does not dictate your recovery, it's how your body responds to the assault (and it is an assault) of surgery. Some people sail through and are feeling pretty normal in 3 months. Others have a tougher road. We have members at both ends of the spectrum. So trying to guess right now just how you will do is pretty pointless because there is no way to know.

Making a choice based on what might be available in the future isn't advisable. Make your choice based on what is known today and be pleasantly surprised if something better comes down the pike. To choose tissue assuming that when you're in need of the next replacement they'll be able to do it via catheter is setting yourself up for disappointment. It's a great thing for people who would not survive surgery, but since they haven't begun to do it on the average, active person to see if the valve will hold up, my guess is that by the time you need a replacement it won't be available to you. (Unless you want to be part of a trial of "normal" patients to see if the valve is going to hold up to normal activity. But from what I've read - they haven't begun talking about trials of that kind.) The On-X is a really promising mechanical. I'd choose it because of the flow dynamics and the lesser risk of clot formation, not hoping that one day I'd be able to throw out my Coumadin.

It sounds like you are feeling more comfortable with the tissue choice, but are worried about the next surgery. Chances are you'll do fine. As in all people, the reason you are wary of mechanical is because of ACT. The thought of ACT is much much worse than the reality of being on it. It truly is "just a pill" for most of us.

The bottom line is you have to go with what you are comfortable with. If you truly don't know which that is, even an inclining and you trust your surgeon, I'd just defer to them and then live your life. To have valve replacement and then sit back and worry about the "what ifs" is wasting the new life that your surgery is giving you - and your family.

Best wishes.

 

[tobagotwo]

A few thoughts...

- Absolutely avoiding reops is not everyone's theme song. Everyone here who chose a tissue valve below the age of 60 did so knowing they would likely have at least one reop. They made their personal statements at the operating room door.

- Statistically, there isn't a valid argument in either direction for middle-aged people. Younger people have a slight edge if they go for a mechanical valve, due to an excessive number of reops. Older people have a slight edge with a tissue valve, due to cranial and intestinal bleeding issues exacerbated by ACT. Either way, it's not that much of a difference. In middle age, the risks of ACT and the risks of reop cancel each other out. Decisions for children are much more complicated.

- An uncomplicated valve replacement, initial or reop, is not anywhere in the risk range of emergency open heart surgery for an actively dissecting aorta. That is not a common experience in valve replacement, and doesn't appear to bear directly on your personal circumstances.

- I will very likely require an early resurgery, before my valve is showing any damage. Based on the nature of my current problem, I would have to have it regardless of the type of valve I had received. Having an On-X or other mechanical would not have prevented it. That is also not a mainstream experience.

In short, you need to look to yourself, to your own fears and biases, to your lifestyle, to your basic nature. The science isn't going to light your way, unless you already have a separate requirement for ACT. This is a decision you make based on how you feel you will most successfully move forward in your life, and in your own skin.

I wish you comfort in your decision, whatever it may be. By all means, once you make it, be pleased with it and don't look back.

Best wishes,

 

[Curtsmum]

We didn't get the choice and my son will have to have another surgery. Although the surgeon said he will use the St Jude valve so i may have to make a decition on that but luckly not for a few years yet. Just wanted to wish you the very best on making a decition, not a easy thing to do. Good luck in making the best choice that works for you.

 

[Ross]

- An uncomplicated valve replacement, initial or reop, is not anywhere in the risk range of emergency open heart surgery for an actively dissecting aorta. That is not a common experience in valve replacement, and doesn't appear to bear directly on your personal circumstances.

Sorry to pick one statement out Tobagotwo, but I have to point out that my second surgery was not an emergency, yet it still nearly was my end. Only reason why I'm picking it out is because I feel it was directed toward what I was saying and wanted to clarify it.

No one can make the choice for you. No one can tell you how well your outcome will be. You simply have to decide what works best for you and then don't look back.

 

[debster913]

Everyone here has given you great information, so I don't know how my experience can really add to the "wealth" here, but I'll try.

Ask anyone here at VR, and they'll tell you that I'm a weird case, if not just plain weird. What I have experienced in the last three years is pretty unique.

I'll start at the beginning, 33 years ago. My mother was in labor with me, and my heart stopped. There is only one person still alive (I was--obviously--a baby and can't remember) who can support this event actually happening, and that is my pediatric cardiologist. I almost died. The doctors gave me only three days to live. I fought hard to be here. In fact, my first year was prety much touch-and-go. I was at my cardio's office all the time, I was on all kinds of heart medications, and the older I got, the less it seemed that my heart would be my demise.

I continued to see my pediatric cardio until I was 21. In my teens, he had sat me down and explained that I would eventually need valve surgery. He said I wouldn't likely need surgery until I was in my 50s or 60s.

I was 30 years old when my valve began to fail. I have myxomatous mitral valve prolapse.

The surgeon took one look at my echo before he said, and I still remember his exact words: "Your valve is bad and something needs to be done about it."
Five weeks after my consult, I was having my mitral valve repaired.

Do I never want to have heart surgery again? That's obvious.

I had minimally invasive surgery. My chest wasn't split open, but that doesn't mean that the healing process wasn't painful. I woke up one night in severe pain with muscle spasms, my back ached, my ribs hurt, my right leg always felt as if someone were trying to rip it off my body. For nearly three weeks, I wondered when I'd feel better, and then I did one day. I even looked better in the days following my surgery--my once tired, bloodshot eyes returned to bright, vibrant, healthy green. The pain is temporary. Getting my life back, not having to sit out on life and watch it from the sidelines, was the gift. I never want to go back to the two months before my surgery when I could barely walk ten feet without being exhausted, or get tired from eating dinner. My valve was failing, and it was failing fast

The fact that I had mitral repair, and that many here have had a re-op after their repairs failed, is still a thought that enters my mind every so often. If, let's say, suddenly my valve fails again and I need surgery at age 40, 60, or even this year, it happens. I could walk out of my cardio's office and he could run me over with his minivan. Anything could happen.

Still, life post-op for me hasn't been easy. The tubes used in my right femoral artery for my valve surgery scarred up the inside of my artery so badly that I needed an angioplasty. My mother was diagnosed with and died of cancer a year later. I had an ablation for PVCs and V-Tach almost a month ago. The way the surgeon tied everything off in my heart was causing a faulty electrical malfunction in my heart--I didn't know this until I had the ablation. My cardio and I always assumed my abnormal heart rhythm post-op-- though it's something I've had my entire life-- was just my heart stabilizing and adjusting to a refurbished, non-leaking valve.

Despite the "interesting" cardiac adventures I've had since my surgery, I'd rather be here now than in the days before my surgery.

 

[Mary]

I don't think your valve choice should be this big of a deal. I'd say on a scale of 1-10 for MY life altering decisions, valve choice is at the bottom. My experience with AVR reinforced my belief that life is too short to spend time worrying about "what ifs". I went with my gut feeling concerning my valve choice, never looked back, and don't regret it in the least.

 

[Mary]

Sorry to pick one statement out Tobagotwo, but I have to point out that my second surgery was not an emergency, yet it still nearly was my end. Only reason why I'm picking it out is because I feel it was directed toward what I was saying and wanted to clarify it.

No one can make the choice for you. No one can tell you how well your outcome will be. You simply have to decide what works best for you and then don't look back.

Ross, don't you think your ongoing lung condition is another reason why you fared so poorly after your second surgery?

 

[Woodbutcher]

I've been reading with interest this pretty racy and thought provoking thread ... Also I'm breaking the "dont look back rule" and doing just that !
It's a tricky one isn't it ? I find myself swinging back and forth and back again .... Tissue would definately have been a better decision for me... Then I read on, no it's definately better to go with the On-X and maybe have the best of both worlds .... Read on some more .... Actually in twenty years time the replacement surgery will be so advanced I'll just nip into hospital as a day patient, yep the tissue has to be the right choice ! Read a couple more and realise things could actually be worse in 20yrs time ! Look at aviation, I think to myself, the mighty Concord, the fastest passenger plane ever from London to New york... It's gone! Never again will anybody fly commercially that quickly across the Atlantic again!! There are more problems with super bugs in hospitals than ever before, so twenty years on it could be worse ?
I read on.... And wind up at Karlynns nearly 10,000th post and swing right back round in my mind and settle luckily with the one I have ... The On-X ! Phew !!

Good luck...

 

[pamela]

I don't think your valve choice should be this big of a deal. I'd say on a scale of 1-10 for MY life altering decisions, valve choice is at the bottom. My experience with AVR reinforced my belief that life is too short to spend time worrying about "what ifs". I went with my gut feeling concerning my valve choice, never looked back, and don't regret it in the least.

Mary, you make such a good point. Having the chance to continue on on this planet, with people I love, in places I love to be, doing what I love to do is more important than what's inside my chest giving me this chance.

I have been surgically slain more than once in my life. Cutters love to put their organized knife wounds on me and I'm so very grateful that the knowledge and technology is there that gave me the same quality of life expectations that I had as a twenty-something. I don't regret my valve choice, truly.

Sh*t happens and when it does, be close to a toilet and not a fan... What may be is not something I base my life on, but it is (no matter what other folks say) a minor consideration when deciding that you are going to, in fact, have life-saving surgery.

Take Heart,
Pamela.

 

[Nupur]

This is a very informative thread to someone like me who will be facing the same decision in a while. I am trying to summarize everything I have read so far for my own benefit.

Mechanical :
Pros: Low risk of re-op

Cons : On ACT for life. As a result
- Certain lifestyles of active sports or exotic travel not possible.
- Monitor yourself closely.
- How about the risk of being on ACT when you get older?

Tissue
Pros :
- No ACT or very low risk of ACT
- Lifestyle not impacted if you don't take ACT.

Cons : Re-op
- How long do you have before the valve needs replaced? Big question, seems to depend on your age.
- What is the risk associated with re-ops? So far I have heard mostly about the pain and trauma but what about Geckely's point, how is the heart impacted. We know you will likely need a pacemaker. What else?

So, I guess the major issue for you is weighing the ACT against the risk of re-op. If the ACT drawbacks are absolutely unacceptable, then you pick the tissue one, and don't worry about the future re-op. On the other hand, if you feel like this is the only time you can ever go through this, then it's mechanical. It's what scares you more : )

I hope it doesn't come to flipping a coin! Good luck, and thanks for starting the thread.

 

[westie]

snap! and turkey

snap! and turkey

Well, I hope I never have to go through it again - that was my reason for choosing a mechanical valve. Plus I had a lot of faith in my surgeon who advised mechanical because in someone my age, and due to it being the mitral valve, tissue "would only last 10-12 years in all probability".
I know there are people on this board who wouldn't agree with that statement, but I trusted his judgment. He is a very highly regarded, experienced surgeon.

No way would I want to have a tissue valve and know that I would be facing another operation - that's just my personal view of course.

I have had a gutsful of hospitals and procedures

Bridgette

bridgette, i agree with you 100%.

just imagine what life would be like if very day you had to contemplate the fact of further heart surgery due to the certain eventual failure of your tissue valve or a "best we could do valve repair". i waited approx 2 years for my first op, the waiting "monstered my life" and i do not want the monster on my back for the next 10 to 12 years while i wait for the next op.

this turkey does not vote for an early christmas