My Introduction, Date Set, Decision Time

[MurmurSinceForever]

Hello, I have been reading here, off and on, for 5 years and I am finally ready to introduce myself. I have had a murmur since, well if not forever, at least for as long as I can remember. It was never a big deal until I needed a simple day surgery procedure and the anaesthesiologist said I should get it looked at. So I did - probable bicuspid aortic valve and stenosis, monitored for 5 years until September when I failed a stress test and was told it was time for replacement.

I don't have many questions because you are all so gracious to provide such detailed information and right now I am facing the decision that I know is all mine to make - tissue or mechanical. My surgery is scheduled for Nov 25th and my surgeon said he needs to know before I get put to sleep.


I have read everything here on the topic and I appreciate what everyone has to say, and it's still difficult to decide...as everyone here knows. I hear ya, that life on Coumadin is no big deal, but will it be a big deal for me? I hear ya, that facing another surgery in 7-10-15 years is unthinkable, but is it worse than those same years on Coumadin...for me? I am female, 50 y.o. and am quite concerned about the impact of being on blood thinners for the next decade specifically. My biggest concerns are its impact on my menstrual cycle, and diagnostic procedures/biopsies (family history of colon polyps, melanoma, and breast cancer). My current thinking is tissue this time and mechanical next time, which seems reasonable to me, except I can't stop thinking that I will wake up from surgery and say I can't take another one of those!

So if I could ask one member one question..Mrs. Bray - you seemed to have had the same concerns presurgery as I do now. If it’s not too personal, could you tell me what made you go mechanical?

I promise not to second guess my decision once it’s made and to breathe, walk and stand up straight during recovery. I love those practical pieces of advice.

And thanks to everyone here who has shared their experiences. It all makes me feel like this is doable.

 

[Broncorod]

Hi murmur.

I was in the same boat as you. Bicuspid aortic valve. My only advantage over your situation, is that I hardly had any time to think about my decision, lol. I had a routine physical on 8/29, an echocardiogram on 9/12 and I had my valve replaced on 9/18/14. Through the echo, they found sever stenosis, and my injection fraction was between 30-35%.

I first found out about murmur at 22 years old. I am now 49, . My surgeon said that statistically, I should get a mechanical, due to my age, but he would do what I wanted. I chose bio valve because of your same concerns. After making my decision to go bio, the surgeon said that if he were in my shoes, he personally would have made the same decision.

I am sure you are doing all kinds of research, and are stressing about which way to go, and you have probably switched back and forth on your decision, as I did. All I can advise you on, is to go with your gut, and do what is right for you!! There are a lot of people on this site that are pro-mechanical. From the stories I've read, it seems the primary reason for this, is not wanting to go through the surgery again. I think I read that statistically, your "long term" mortality risk is more favorable with bio, and additional surgeries. But do your own research, and decipher the statistics yourself.

After going through the surgery myself, I found that the hardest parts were the moments before going into surgery (due to being scared), and the day after surgery. But after that, I was out of the hospital in 5 days, and am recovering very quickly. Please feel free to ask me any questions pre or post surgery since I just went through this also. I can make myself available to you via email, or phone if you would prefer.

Here are a few sites I read while going through the decision process.
http://heartsurgeryinfo.com/biological-or-mechanical-heart-valve/
http://circ.ahajournals.org/content...FIRSTINDEX=0&minscore=5000&resourcetype=HWCIT

I wish you well, and hope that everything goes well with you!!!

God bless,
Rod

 

[scott.eitman]

I hear your concerns as those a similar to many of us going into our 1st surgery. We can all come up with many reasons to not want to take coumadin. I did.

I am guilty of going bio the 1st time and I loved it. I had a great 12 years with my Homograft. But a 2nd surgery, recovery and the complications was not fun.

All I can say is, I believe that a second surgery (and the recovery and the RISK) is much worse than the next decade of coumadin. I know this is very open to debate.

 

[ottagal]

Wishing you all the best with your decision going forward.

It was one of the most difficult decisions I had to make. I can't speak to other heart centers, but my surgeon told me that the risk for a 2nd op at the Heart Center I had my surgery at was the same as the first for my health and age group. He gave me stats of the risk for a 3rd op etc.

Of course, if you are someone who ends up with complications second time around that is a moot point. I know I will have to undergo a second surgery and am sure it will be as difficult a decision second time around as it was first time. As Scott said, I, too am 'loving not being on coumadin' for now. I can't read the future, but I do know most on this site have very little issue being on coumadin, too. I had a bleeding issue that did sway my decision to choose tissue for now. Hope I didn't confuse you.

 

[MurmurSinceForever]

Broncorod - thank you for your input and for the links. I have spent the better part of my workday researching online starting with those links and they have helped. I am a trained scientist so I like information, but still have a hard time applying it to myself. I have always hated statistics for that reason.

I think I might have been better off with a fast track to surgery that you experienced, but I will try to use this time effectively. I may come back to followup with questions as my date gets closer. Thanks for the offer and good wishes.

 

[MurmurSinceForever]

scott.eitman - thank you too for your response. You sent me on a second round of internet searching and I wonder if I may have found a counter to your kind caution about a probable re-op.

From this link:

http://my.clevelandclinic.org/servi...on/videos/faqsurgery/video_avr/transcript_avr

"The disadvantages of homografts are that the operation to put one in is a primary operation and is bigger than the operation to put in a heterograft. The re-operation for a homograft is also considerably more difficult than a re-operation for a heterograft. Now, fortunately, in experienced hands, we've found that the risk of doing those homograft re-operations has been relatively low, but they are bigger operations than the re-operation of a heterograft."

The site did not offer a reason for the difficulties for a re-op with a homograft, but I thought it was intriguing. I was not offered a homograft, only a heterograft (bovine) tissue valve versus the mechanical.

But thank you, sincerely, because presented with your caution against my stated current thinking sent me to seek a counter argument, which in itself, reinforces that my mind is 3/4 of the way to made up.

I wish you all the best for a lifetime of contentment with your forever valve.

 

[MurmurSinceForever]

ottagal - Thank you also. Do I detect a fellow Canadian by your name? A beautiful city!

My surgeon offered the same advice regarding re-operation risks. And that's it exactly, if I end up with complications second time around I will kick my future self, but hopefully I will also remember and appreciate the previous coumadin free years for as long as they lasted. Thanks for that little extra information on the pre-existing bleeding issue that tipped the scale towards tissue. I think that is what I am looking for is a scale tipper, one way or the other. I might just have to go with my gut, as suggested by Rod.

I did find this helpful little decision tool though:
https://myhealth.alberta.ca/health/pages/conditions.aspx?hwid=uf4587

It basically revealed exactly what I already knew, but it might have been helpful at the start of this process.

 

[dornole]

What's your concern about your cycle?

 

[river-wear]

My current thinking is tissue this time and mechanical next time, which seems reasonable to me, except I can't stop thinking that I will wake up from surgery and say I can't take another one of those!

I would almost guarantee you'll wake up saying that to yourself. Regardless of what you choose, that feeling will most likely pass.

One other thing to keep in mind is that a-fib is a very common complication of heart surgery. It's usually short-lived and goes away as your heart heals. However, each surgery can increase the chance of it not resolving and potentially requiring Coumadin anyway.

Best of luck on the 25th!

 

[neil]

hi murmur, good advice already given, listen to it but dont base your choice on somebody elses outlook, both have good and bad things about them, you could pick mech and potentially need a re op anyway, good luck and you will do just fine,

 

[MurmurSinceForever]

dornole - the surgeon said that on blood thinners I should expect heavier cycles. My older sister experienced a significant increase in bleeding through perimenopause with no blood thinners. We have a very similar physical makeup, although our menstural and child bearing histories are quite disimilar. It just concerns me, quality of life over the next 4-5 years. After menopause, obviously no problem. Honestly, that is main reason for my current "tissue now, mechanical next time" thinking.

river-wear - thanks for the response and the good wishes, I have heard/read that here? about the afib potentially requiring Coumadin for life anyway. I would find that ironically humourous.

neil – yup that too, ironic and funny. It might come down to a coin flip on the drive to the hospital. If the fates are going to play a role, might as well let them play sooner than later. Just kidding, kind of.

Thanks all!

 

[Broncorod]

You're welcome Murmur. I'm really happy to see you are getting feedback from those who have been through it. You will be in my prayers, and I look forward to hearing about your successful recovery.

 

[dornole]

We discussed this recently, but I can't seem to find it. My cycle became a lot heavier just on 325 mg aspirin and it WAS a lifestyle issue, but given that I'm done having children, I was able to have an ablation (simple procedure in a a gyno's office to cauterize the uterine lining) and now my period is minimal. I think a couple others had done it also, either before or after surgery and going on warfarin. It is a really nice option that leaves your hormones alone while solving the problem.

It's really likely I'm headed for replacement in the next 5 years if not 2 months (I'm 46, next check in January) and unless I get new info that I can get a repair again (unlikely at present) it'll be mechanical for me since I have several risk factors for a short-lived tissue valve (young, female, mitral position, rheumatic heart disease history) and no scale-tipping reason to avoid blood thinners (e.g., want more babies, addicted to head-trauma-inducing extreme sports, can't remember to take meds). I think if I need other testing or surgery my docs will be able to manage bridging the Coumadin.

I am sure you will be able to cope with whatever arises, whatever your choice. It's not like we have a lot of choice but to cope right? ; )

Sending good wishes your way.

 

[MurmurSinceForever]

Thank you dornole, that option is very thought provoking. Our situations are very similar, and I appreciate your input. Best wishes for your next check. I went 5 years checking every six months and pretty much knew the last time going in ( this past September), I would get the nod for surgery. After the initial shock, it has actually been comforting to know I am finally going to get it fixed.

 

[MurmurSinceForever]

Hi all, well 1 day before surgery and I finally made my decision. It almost came down to flipping a loonie on the drive to the hospital, but that just sounded crazy.

I thought it might help future others to read how I eventually made a logical choice..for me.

From the time I knew I would eventually need the AVR surgery, I have been going back and forth over which valve to get. In the last 20 days, I have had to stop with the theoretical and decide already. I am a very analytical person, but struggle with definitive decisions. I read and appreciated all comments on this forum, read all linked studies and papers and came to the conclusion that everyone who said you can't make a bad choice was right. The scale tipper was not to be found in the valve itself. In the end I had to figure out my personality and what I could live with. Ultimately and after discussions with my huband, I figured out my need to have some control over my situation and my hope to live a proactive versus reactive life pointed to a mechanical valve.

What finally helped was visualizing myself in 5 years time, going for annual cardiac checkups and how I would feel going into those appointments. I realized that in 5 years with a tissue valve I would be right back where I was 5 years ago, knowing the valve would eventually need replacement and wondering if this was the appointment where the cardiologist said it was time - in other words a reactive response. Whereas with a mechanical valve, in 5 years I would be settling into a comfortable place, knowing the valve was good, well in control with the warfarin and INR management and looking forward to less cardiac interventions and more living with a new valve/medication. This was the option that allows me some control over my situation. The valve should last and I should be able to manage the warfarin dosing. With a tissue valve, there was nothing for me to do but worry about the next surgery...and I would worry. As much as I would like to think I could forget and move forward, I know myself better.

So that's it for me and my situation. I know crappy things happen and I could need a re-operation someday, but for me, this is what will allow me to take a proactive approach going forward. And I know it's not right choice for everyone, trust me. If you read the original post above, 20 days ago I would have bet good money on having a tissue valve installed tomorrow. Now it's either a Carbomedics Top Hat (sounds spiffy) or a St. Jude Regent. Luckily I don`t have to make that choice. Wish me luck!

 

[chaconne]

Murmur,

The reasons you give for deciding on a Mechanical were very similar to mine. It seemed to me that getting used to a new normal was easier than having a major operation every decade or so. Blessings on you surgery and recovery.