New here - congenital BAV replacement coming right up

[JiFaire]

Hi everyone...

I'm new on the site; thanks SO much to those who have put this place together for everyone to share. I've been reading rabidly, and it has helped immensely to hear from others who have been through this.

I have a congenital BAV I didn't know about until a few years back; I've always been athletic until recently, when shortness of breath has started to really ruin my day. I thought slowing down was just me, hitting my 50s, but a smart doctor and a pile of tests pointed out that there is a reason for this. Now, a few years of close monitoring later, I can hardly carry my grandkids around without stopping for a breather break, and the doctors have decided this is the optimum time to do AVR. I go in sometime in the next 2 weeks.

So now I get to decide; Mechanical or Tissue?

I'm freaked out bad enough by the prospect of open-heart surgery, now I have to face either Coumadin or having this done again in 10-15 yrs, and I haven't made up my mind. My surgeon is also involved inthe ON-X PROACT trial, so I might qualify for that one, if I chose.

I'm leaning toward tissue, probably bovine, with the hope that TAVR will be more developed by the time the little bugger wears out, but I'd love to hear your thoughts on this.

I'm going in on Tuesday for some Dental work; I have what might be a low-grade abcess in a molar, and the dentist wants to either root canal or pull it before I go anywhere near OHS. Anybody have any experience with this?

Generally, I know I need to have this done, and logically, I'm OK with that. But emotionally, I'm less assured; I guess that's normal, but I don't have to like it.

Jim

 

[Fundy]

Hi Jim, the tissue vs mechanical choice I think comes down to your personal fears regarding another reoperation. It seeems to be about a 50/50 split at your age group as to which choice to make.

My thoughts on TAVR is that even if the results do improve, that the data concerning a reop later will still be nonexistant; and that most likely in 10-15 years if I could decide replacement by that method I'd prefer OHS then and maybe hope to go with the transcutaneous approach in my 70's or 80's.

 

[pellicle]

Hi

Hi Jim, the tissue vs mechanical choice I think comes down to your personal fears regarding another reoperation. It seeems to be about a 50/50 split at your age group as to which choice to make.

its not just fears, its also 'sensible precaution'. I have had 3 open heart operations. If I'd have gone for a non mechancial valve at my age (47) then I would be likely facing a 4th surgery in the next 15 years. Such an operation would (with issues such as scar tissue and adhesions) be significantly more risky.

To Jim

depends on a number of factors. Mechanicals have longer life (meaning you won't need to face another surgery later in life) but (as you mention) warfarin dependence. What is your activity lifestyle? What advice has the surgeon given? Feel free to ask me about my situation if you wish to know more of my feelings about my mechanical (and the last 20 years of life with a homograph).

 

[pellicle]

Hi

Generally, I know I need to have this done, and logically, I'm OK with that. But emotionally, I'm less assured; I guess that's normal, but I don't have to like it.

that's right, but I found 'comfort' comes with confidence in the decision. I think asking and talking about this assist you to become confident with the decision. (oh and yes I faced this decision)

 

[DanielB]

Hi Jim and welcome to the forum. Valve choice is one of those issues that has a different answer for everyone. It is a personal choice with many good points on both sides. I found it best foer me to get educated on the options from sources such as this site and dicussing it with my cardio and surgeons before chossing mechanical, going with the On-X. Though I am hopeful that the proact study will allow mw an easier alternative to coumadin management, I will agree with others on this forum that coumadin has had very little impact on my daily life. I was 53 when I had my valve replaced and that was a factor for me in that another surgery was not something I wanted to have in my future, not only for me, but I could not see putting my family through that again. I realized early on eafter diagnosis that my family was stressing the whole process even more than me. As I am with the hope of the proact study, I did not want to rely on hope of TAVI, but to make my decsions on what is standard and trusted now. As I said, everyone is different and which road you are most comfortable with is best. The main thing is that you are getting it done, both types of valves do the job well.

 

[JiFaire]

Thanks so much for the responses. I will continue to mull this one over; there are many things to consider, as you are all aware of.

Can you tell me, how much does diet affect the coumadin dosage? I'm absolutely terrible at taking care of myself; I eat when I remember to, which isn't a real good thing when taking meds. I guess that's one more things I will need to get better at.

I'm hoping this dental work goes smoothly and I can get on with this; I find waiting harder than I thought it would be. Part of me wants to keep waiting (oh, for maybe a decade or so) because I'm such a chicken, but the other part of me wants to go in like NOW and start my new life.

The strangest thing, to me, is that there is some strange comfort in knowing that there's no option here, really... if I have surgery, I might die. If I don't, I will die. That eliminates one choice. Choosing the valve is really a small decision, after that.

Still and all, I am greatly encouraged hearing so many people talk about this so nonchalently; my friends all blanche when they try to approach the subject with me, and mostly, I try not to think about it. It'll come along soon enough, I guess. Thanks for listening.

 

[pellicle]

Hi

Can you tell me, how much does diet affect the coumadin dosage? I'm absolutely terrible at taking care of myself; I eat when I remember to, which isn't a real good thing when taking meds. I guess that's one more things I will need to get better at.

Basically its like this: eat badly and skip greens, eating meat and breads and you won't effect warfarin much. It blocks Vitamin K as its operation. So if you are a healthy eater it will perhaps take more management of your diet to keep your INR stable with a dose.

So far it hasn't effected dental work for me , which seemed to surprise the dentist too

 

[Fundy]

The eating habits thing was athinking point for me as well. I'm a shift worker which throws a lot of daily scheduling type stuff off, and eating is usually somedays one meal, some none, sometimes four or five meals. I figure it would play havoc with the INR levels and be constantly out of range. Eating consistantly and sensibly would have been my goal for sure if I chose to go the mechanicaal valve route.

My wife also felt the tissue valve route was the best option for me, so it really wasn't a matter of stressing out family members against their will. The biggest drawback of going tissue at fifty, is that you will experience this same type of situation again. You might experience the risks and suffering the same, better, or worse. Not just the operation phase and recovery phase, but the symptoms phase as well.

 

[JiFaire]

Not just the operation phase and recovery phase, but the symptoms phase as well.

Hmmm ... funny how I hadn't considered that part. I wonder why? I was completely focused on the possibility of re-operation, like an event, rather than the culmination of a process.

Thanks for that insight; it changes my thinking again.

So far it hasn't effected dental work for me , which seemed to surprise the dentist too

That's a nice thing to know; I think my dental plan has put my dentist's kids through Med school... I seem to have both bad teeth and bad valves.

 

[JiFaire]

Feel free to ask me about my situation if you wish to know more of my feelings about my mechanical (and the last 20 years of life with a homograph).

Thanks for offering... you have a unique perspective, having had OHS more than once,and having had both types of valves (Tissue and Mechanical).

I can't remember all the questions I had earlier today, but here are the ones that are on my mind right now...

-- Did you go through the same degradation when your last bio valve started to deteriorate?
-- Which type of valve did you end up with?
-- Now that you've gone with a 'clicker', is the coumadin the only big change for you, as far as functionality?

I hope you don't mind my questions; having a real person answer them with a personal perspective is so much more vivid than looking up the descriptions online...

Jim

 

[pellicle]

Hi

I can't remember all the questions I had earlier today, but here are the ones that are on my mind right now...

-- Did you go through the same degradation when your last bio valve started to deteriorate?

I did ... I noticed that it started to become less effective and could identify it was 'leaking'. My tissue valve was a cryopreserved homograph however which is quite different to a bovine or porcine valve (its from a person). Mine was implanted in 1992 and by all indications for my age group I got outstanding milage out of it. I had got to the point where I was hoping it was going to 'last me out'.

However at the last checkup (when there was a 5 or so year break in checkups) they identified a rather worrisome aneurysm and so that required me to have an operation. While they were in there they took out the valve because it was decreasing in competency.

-- Which type of valve did you end up with?

Now I have an ATS valve, which is one of the modern open pivot types IIRC

-- Now that you've gone with a 'clicker', is the coumadin the only big change for you, as far as functionality?

yes (although I'm on Marevan). I can report that it does 'thump' more than click. It did take some getting used to, and the first few months with it were a little distressing for me as I didn't like that.


I can also report that (like when my natural valve was replaced with someone elses) soon after surgery my cardio vascular fitness was significantly increased. Now I just need to work on other musculature and especially the 'support' structure as well as the major muscle groups to regain some strength ....

I hope you don't mind my questions; having a real person answer them with a personal perspective is so much more vivid than looking up the descriptions online...

not at all ... quite happy to share. In Australia all this has been 'done' by the public health system, since it hasn't cost me any money (aside from taxes) I have always felt comfortable in sharing and assisting others (including doctors) to learn.

 

[Ella4hubby]

I find waiting harder than I thought it would be. Part of me wants to keep waiting (oh, for maybe a decade or so) because I'm such a chicken, but the other part of me wants to go in like NOW and start my new life.

JiFaire this is exactly the way we feel! We are on tenterhooks, waiting for the call for surgery for Mitral Valve replacement.....

Still and all, I am greatly encouraged hearing so many people talk about this so nonchalently; my friends all blanche when they try to approach the subject with me, and mostly, I try not to think about it.

It is again so true what you are saying here...we have been researching and talking on here and with others about this--seems almost "normal" to be thinking and talking about these issues, but when talking with friends or others--you see a bit of a shock wave pass over them and then they don't know what to say...We're dealing with some heavy-duty stuff here--you are in the right place for help and support...people here have a very good idea of what you are going through!

 

[JiFaire]

JiFaire this is exactly the way we feel! We are on tenterhooks, waiting for the call for surgery for Mitral Valve replacement.....

Hope all goes well for you! I'm plodding along, one thing at a time. Had some teeth pulled out today (had an abscess going, and the dentist figured the fastest way to solve that was to remove the teeth), so I'm not a happy guy right now, but in context, I figure it's small potatoes.

Just getting warmed up... :thumbup:

 

[JiFaire]

I can also report that (like when my natural valve was replaced with someone elses) soon after surgery my cardio vascular fitness was significantly increased. Now I just need to work on other musculature and especially the 'support' structure as well as the major muscle groups to regain some strength ....

Now this is an interesting observation - and I've heard it before. Another veteran told me I've probably been feeling crappy for years, and that despite the surgery, I would feel better after than before. I haven't been able to do endurance sports for years... this might be why, and it will be nice to get back to being me.

not at all ... quite happy to share. In Australia all this has been 'done' by the public health system, since it hasn't cost me any money (aside from taxes) I have always felt comfortable in sharing and assisting others (including doctors) to learn.

We're in the same position here in Canada; the public health system has collected my taxes for decades, and I haven't needed much done. From today's vantage point, it looks like it was a good investment! Honestly, I'm happy to be getting this done in Edmonton, by these doctors.

Thank you for sharing your experiences and knowledge; it helps a lot.
Jim

 

[DMS]

Hi Jim,

I am also fairly new to the site and very much appreciate all the information available as well. Although it is an extremely personal choice for you to make, I wanted to pass along one of the things that helped me decide what type of valve to choose. I am in my 50s (late) and just had an AVR done in September.

I chose a mechanical valve due in a large part as to how the odds stacked up as explained by my surgeon. He also instructs in London ON for cardiac surgery. He discussed the odds of a successful outcome and basically said a certain percentage will make out just fine, some won't. Out of the survivors, a certain percentage will have some sort of adverse event. Going through the operation once left pretty good odds of a great result. Doing it twice is a measurably less than that. Also, I did not want to have to go through it again in my 70s or 80s. The valve recommended by the surgeon also allows for a lower INR value than is commonly seen. The range for me is 1.8-2.5 so I felt better about that.

Personally, I felt the downside of the Warfarin therapy to be manageable, especially with reliable home test meters available in Canada now. Diet changes are not required and only a certain amount of consistency in the diet is really necessary (according my research and all the good posters here anyway).

I wish you the best of success in whichever you choose and trust you will be as confident as I felt no matter which you pick.

 

[Oilman]

Hi Jim,

Welcome to another Albertan, I'm just down the road from you in Red Deer. I have been watching my BAV every couple of years for the past 20 yrs. Two years ago I suffered a small TIA (stroke) luckily with no lasting effects, my cardiologist believes today that it was AFIB which caused the BAV to throw little clots. I have been on warfarin ever since, the only change I made was to stop playing ice hockey. Warfarin mange has been no problem and I never changed my diet. Since I'm already 30 months into warfarin now. I am set on a mechanical valve and root for my install, with any luck I may avoid a re op. I am looking at AVR real soon at the Mazankowski Albetra Heart Institute. I had my decision making angiogram done up there on Sept 21/12. Just waiting for a visit with the cardio & surgeon. The valve replacement community here is by far the best support and means of info,from people that have had hands on experiences. I hoping to get in before Xmas but was told that time of year can hold up non emergency surgurys too. The wait is the hardest thing for me so far, I am so ready to get it done. Good luck to you on your journey.

Doug

 

[JiFaire]

Hi Doug!

I also had a TIA a number of years ago, but nobody picked up on my BAV until a few years ago when I started noticing other symptoms. Now. Like you, my cardiologist thinks the two are related.

I hope you get in soon... Like me, you must be going buggy with the wait. Thank God we found this place and these people.

Thanks for sharing!
Jim

 

[JiFaire]

Hi DMS!

Thanks for the great explanation... Many of those details resonate with me, also. That second surgery at age 70 is a bit daunting, although there is hope for better methodology by then. Assuming of course that the first surgery goes well and things last appropriately.

Glad you surgery went well!
Jim

 

[Oilman]

Jim,

I noticed you mentioned it was possible to receive an On-X valve in Edmonton. Most of the Canadian folks on here have been getting the St Jude valves. I was thinking just maybe the surgeons up here were not familiar with the installation and just using what they have handled the most. I'm sure either one if chosen will be a vert good choice. I just opened up my mail today and received my consultation date of Dec 10th with the surgeon, Dr Steven Meyers. After this long of a wait I've have learned a lot in this valve community, and have many questions for him.

Thanks
Doug

 

[Sheepdog1]

Jim,
I had mine done 4 yrs a nd 9 months ago at 44y/o. I chose ON-X because I'll be DARN if I'm going through that AGAIN. All in all, it wasn't THAT bad but not if I have a choice. The ON-X uses a lower theraputic level of Coumadin. I realize that flesh valves eliminate that issue but they last 10 - 15 yars. There is BUNCHES of mis-information about Coumadin use. I was a cop in Atlanta when I had the surgery and when I changed departments, I brought a letter from my Cardio, Surg and Coumadin Nurse all saying there was NO reason I couldn't do the job. I have shaved my head at least 5x a week while on Coumadin. With a regular razor that is!. Cut myself, had teeth pulled, etc. NO BIGGIE!
My mom is going through the same decision rght now. She is having a AVR tomorrow. The issue with her is that she is 71 y/o. That causes an issue. She doesn't like the 10-15 year replacement date on the flesh valve because at 80 to 85 she knows OBAMA care will NOT go for another surgery.
I have not read the previous posts but thought I would put my 2 cents in the pot.
Good Luck,
Greg