I'm sure this has been done before...

[tabitha]

but do you mind humouring a newbie?

I still have to decide on which valve (mechanical or bio) to replace my aortic valve. I keep flip-flopping back and forth and there just doesn't seem to be a clear path for me. I keep thinking that if I knew that 10 or 20 years from now that I was going to be hit by a mack truck I would do my best to avoid it right? So, why am I considering a bio valve? On the other hand, I really don't want to have to worry every single day about Coumadin. I just don't.

Every doctor I talk to confuses me further as 4 of them have said that they, themselves would choose bio - for various reasons - including my surgeon! My cardiologist says that he's choose mechanical. He'd choose mechanical for many reasons, but the main one being that the guidelines are quite clear that anyone under 65 'should' get a mechanical valve.

I'm terrified about agreeing to being hit by this mac truck a second time because I don't yet know what it's going to be like the first time. But I fear that I will live in fear on Coumadin (silly, I'm sure, but I can't get past that right now)

So, could you humour me by telling me which valve you chose and why? What was your deciding factor? Or, is this has been done to death, could someone post a link to that thread so I can go through it?

Thanks for keeping me somewhat sane in this....

 

[Greg a]

Tabitha, while ti some the answer is clear cut, to me it is not due to the advancement made daily in procedures such as the Clevland Clinic, Texas Heart, and here in Canada at Ottawa Heart, Montreal, LOndon Health Sciences and even here in Kitchener Dr Ashe had done amazing work via porthole surgery did a mitral valve prolapse as I brought forward in Feb http://www.valvereplacement.org/forums/showthread.php?39739-New-in-the-field-of-mitral-valve-prolapse&highlight=news and the work being done in cath labs ..........

 

[Freddie]

To make my health history really short, I didn't have time to do any research about valves, my surgery was said and done within 5 days. Put on the "list" on a Monday and had surgery that same week on Friday.

I do remember my surgeon saying "I'll repair it if I can, if I can't I'll put in a mechanical.......cause I don't think you'll want to go through this again".

After I've been there done that in regards of warfarin......what your feeling is normal, it will just take time to wrap your head around it. Trust me, I was a mess, thanks goodness for this forum and we'll all be here to guide you, but don't worry about it - it's a minor detail for right now.

 

[karla]

Hi, Tabitha,
I chose a mechanical valve for one main reason: for me, I would rather take coumadin the rest of my life than undergo another OHS because the thought of getting a hospital acquired infection scares the living you know what out of me. I have been a nurse for 30+ years and have seen lots and lots of hospital acquired infections - enough that, for me at least - the risk of getting that kind of infection far outweighs the risks of taking coumadin. That said, the vast majority of patients do NOT get infections.
It's a tough decision but you are doing the right thing - getting lots of different opinions and viewpoints so you can make the decision that is right for you.
I am quite comfortable with my decision for a mechanical valve but that will not be the right choice for plenty of people for their own very good reasons.
Good luck!

 

[Superman]

I always like throwing this one out there just to put a wrench in things. I had mechanical the first time and still ended up with a second OHS. It's no guarantee. Especially if your aorta is just fine now. Mine measured fine right up until a year or two before my surgery. Then it when from 2.6 cm to 4.9 cm in a couple short years. Landed me with another OHS 19 years after the first. I still went with mechanical again though.

I'm used to it and warfarin just hasn't been that big of an inconvenience (other than the whole rescheduled "V" that led to our 5th child because my INR didn't get low enough).

My thoughts were much the same as yours. I would rather avoid repeat OHS in the future and do whatever can be done to minimize that possibility.

Just know that neither choice is a guarantee. Tissue doesn't guarantee no warfarin, and mechanical doesn't guarantee against repeat surgery. It took until my second OHS after knowing about my condition my entire life having one OHS already, to finally come to terms with the notion that this isn't something that is just fixed and goes away. No matter what route you choose, you'll always have to be just a little bit more aware of your cardiac health than your peers.

 

[bocco]

Tabitha,

I have to agree with everything Karla said. Don't want to go through this again if I can possibly avoid it.

Gary

 

[Bina]

Knowing that I don't do well with anesthesia and surgery, would constantly worry about when a tissue valve would fail, and I was
only 46, so I chose a mech valve... Coumadin did scare the crap out of me initially, but now it is a total non issue.
Only you know how you feel about your body and your lifestyle, so take some time and choose carefully.

 

[escargome]

I have a bovine valve. Was 56 when I chose it. I hemmed and hawwed for a few weeks. Neither my surgeon nor cardiologist would vote either way. So in the end I just examined myself one day and came to realize that firstly I am truly terrible about taking medication. I am type 2 diabetic and most of the time I forget to take my medicine at least two times a week. And here I am almost 4 years since the surgery and I still have problems with taking my medication. So I figured that I would give the MACK truck a shot at me. And since everyone's recovery is different, the truck didn't hurt me as much as I thought and now I pray that the second time around it will miss me by mere inches and I will survive.
But, in the end this is going to be your decision and yours alone. Good Luck with whichever way you decide to go. We are here for you no matter what.

 

[Mom2izzy]

I'm not sure that I'm qualified to answer because I had my own valve repaired rather than replaced, but I did have to make the decision "just in case" my valve couldn't be repaired.

I chose tissue...why?
1) My husband was scared to death of Coumadin because his father had recently been in a month long coma due to a brain bleed after being in a car accident. This was the first in a series of events that eventually culminated in his death. His brain slowly bled for about a week before it finally built up enough to put pressure on his brain. HOWEVER, we learned that his INR was somewhere around 5!!! He was on Coumadin, but was obviously not checking his levels. He was also diabetic and never checked his sugar, so he was probably the wrong person to base this decision on. I think I would have been more diligent about taking care of myself, but the bottom line was that I didn't want to have to be.
2) Although a tissue valve would possibly mean another OHS, I could at least TRY to forget about it until the next surgery was imminent. With mechanical, I would be at some level of risk every day, and I would be reminded of that risk every time I popped those little pills. I already have some issues with anxiety; I wasn't sure how I would cope.
3) There is a decent chance that by the time I would need to have a re-op, they would be able to use the cath approach, so I would not necessarily need another OHS.

Initially, my biggest fear was that my repair would fail and I would need to have another surgery, but now that I am pretty much back to "normal", I am much less afraid of requiring another surgery in the future. Although the first few days felt like I had been by that Mack truck and the first couple weeks were definitely not fun, at six weeks post-op, I look back and know that if I had to do it again, I could handle it...not that I want to of course.

 

[ottagal]

Tobago's writings on valve selection might assist you in selecting a valve. He provides a good synopsis of the pros and cons of both.
See the link below.
http://www.valvereplacement.org/for...-Famous-Tobagotwo-Writings-On-Valve-Selection

 

[Boston Tiger]

I'm in the same boat at Mom2Izzy -- I had a repair, but had requested a tissue valve in case my surgeon couldn't perform the repair. I went back and forth several times, and was leaning hard toward mechanical until I went in for my pre-op testing, when the cardiac nurse started talking about the amazing new procedures that seemed to be just a few years down the road. I don't know if I'd have been as willing to switch if I had read all the success stories from people on here with mechanical valves, since the idea of avoiding another OHS down the road has to be really appealing.

 

[Julian]

Amazing times we live in no doubt but there's nothing like the real thing as of yet. The ticking and thumping of a mechanical valve can be annoying and make you feel a way that can't be explained. Sometimes you love to hear it and sometimes you hate to hear it. In my situation I got a hardy piece of conduit for an aneurysm repair so that makes the thumping and ticking worse.

One thing that I couldn't foresee before surgery was how horrible the whole surgery experience was for ME, the recovery has not been fun at all and mostly has been very trying of every part of my being; mind you I was one of the most optimistic of the bunch going into surgery and looking forward to feeling amazing after. Now 8 1/2 months post op things still ain't right and my recovery has basically been bump free.

The heart doesn't like to be tinkered with I found out the hard way and I "enjoy" intermittent strange heart sensations from time to time. Sometimes these irregular heart beats come once in awhile and other times they bug for hours. I truly haven't had it that bad concerning strange heart beats and sensations compared to some or maybe even most but 1 minute of irregular heart beats is too much for anyone to experience if you ask me. Sadly strange heart beats/sensations/rhythms after surgery are very common and for many are life long.

Every time you have an additional surgery that would mean more tinkering and possibly more strange heart issues post op. If I can decrease my odds of enduring another heart surgery I will at all costs even if that includes the "risk" of dealing with anticoagulants the rest of my life.

Again, what I'm sharing are things I've learned after the fact in other words after surgery. I had no idea how the surgery was going to affect me. If I personally would of went tissue I would be thinking non stop "how long will this last till I have to go through this again." At least with a mechanical valve I have some HOPE that I may never have to endure the surgery again. Even if the valve only lasts 20 years at least that would buy me more time for new advancements to come along that may be a "final" fix. At my young age a tissue would of lasted me 5 years, 10 years max.

In the end I'm glad I chose mechanical because after what I know now tissue unfortunately would of been the worse choice for me. Again there was no way of me knowing this before surgery, its a risk we all take. Oh ya and coumadin is no big deal, again I found this out after surgery.

 

[FC in Texas]

tabitha-

My situation was a little like yours in that my cardiologist was in favor of a mechanical valve (I had just turned 50 when i needed the replacement). I met with two surgeons, one who advocated either mechanical or a Ross procedure, although there was some concern about that as I had previously undergone radiation treatments in that area. I had essentially decided on the mechanical because of these inputs and the fact that I wanted to do this as few times as possible. The second surgeon I met with advised against the Ross and while noncommittal regarding bio or mechanical, he really asked me to think about the implications of a daily coumadin routine. He knew that I was active, wanted to stay active and had two kids that I planned to do a lot with. Then while considering all this, a cardiologist friend of the family called me to discuss what was going on in the area of transcatheter valve replacement and the possibility that a future replacement 10 years down the road might not require OHS.

Those two conversations convinced me to choose the tissue valve. My cardiologist was a little surprised but did tell me that another patient (my age) he had seen that day was 15 years into his tissue valve and still going good. There is no right or wrong decision. It sounds like you are thinking of all the right things and the right decision for you will come to you. One more thing I would add. I was initially leaning mechanical because I was scared to death of the surgery and wanted to do everything possible to limit the chance of another one. I am lucky that my surgery went well and my recovery is pretty smooth so far as well. I hope this valve lasts 20+ years and if I need a new one there is a easier, safer way. But if not, I am convinced I could do it again.

 

[hook]

I am another mechanical guy, and I chose it to also avoid the second and third mac truck; my recovery was more like a train. There are some down sides to coumadin, but taking it is no big deal; I don't bleed or bruise more than usual.

When considering a second surgery you not only have to consider the risk to yourself, but also to the people around you. What will it do to your career, what is the real cost.

The only time had a bit of regret is when I tried to get some elective surgery, and I was unable to get a surgeon to do the deed.

 

[Sarah_Louise]

Hey,
I was born with a complex CHD and had to have numerous valve replacement and repairs,
13 weeks, i had a homograft conduit put in with a tissue pulmonary valve, & aortic repair, 8 years, i had another homograft conduit put in with a tissue pulmonary valve replacement, 13 years, i was initially going in for an aortic valve repair, but after 5 attempts at a repair i ended up ticking, as it was un repairable and i got a mechanical valve, 17 years, i needed an emergancy aortic valve replacement as i had lots of clots & problems with my anticoagulation, so needed a tissue valve replacement, but i've only had the valve in 11 months and got regurgitation on it, but my consultants hopeful i should get anywhere between 5-8 years out of it!!
I don't think at any point i got a choice to choose which valve, the main one being my ages LOL, apart from when i was 17 and i agreed with the consultant & surgeons to change my valve to a tissue one,
Good luck to you
Love Sarah xxx

 

[Julian]

Hey,
I was born with a complex CHD and had to have numerous valve replacement and repairs,
13 weeks, i had a homograft conduit put in with a tissue pulmonary valve, & aortic repair, 8 years, i had another homograft conduit put in with a tissue pulmonary valve replacement, 13 years, i was initially going in for an aortic valve repair, but after 5 attempts at a repair i ended up ticking, as it was un repairable and i got a mechanical valve, 17 years, i needed an emergancy aortic valve replacement as i had lots of clots & problems with my anticoagulation, so needed a tissue valve replacement, but i've only had the valve in 11 months and got regurgitation on it, but my consultants hopeful i should get anywhere between 5-8 years out of it!!
I don't think at any point i got a choice to choose which valve, the main one being my ages LOL, apart from when i was 17 and i agreed with the consultant & surgeons to change my valve to a tissue one,
Good luck to you
Love Sarah xxx

Flipping amazing story!

 

[Luana]

Just know that neither choice is a guarantee. Tissue doesn't guarantee no warfarin, and mechanical doesn't guarantee against repeat surgery.

Very true, no guarantees, I don't know how old you are, but I was leaning towards tissue when my surgeon said it would mean 2 if not 3 additional surgeries. This is not like any other surgery; it's more difficult, while some have a fairly easy time, you don't know what your roll of the dice will be. I had the feeling I wouldn't want another surgery, and I was right.

Coumadin is not a big deal. I freely eat vegetables and salad greens and have had nothing more than a few minor bumps with it. The dose is adjusted to your diet, not the other way around.

 

[dtread]

I chose mechanical and in retrospect glad I did. Don't ever want to go through surgery and the long recovery that it requires ever again. The anesthetic shut down my intestines so food was not being processed, so I ended up having to have an enema and an endoscopy. Then a transfusion a couple of days later. Then I had heart block and they had to shock my heart and move me to intensive care. The next day I got a pacemaker which I still have in addition to the mechanical valve. But I made pretty much a complete recovery, comparing pre-op and post-op workouts. But it took a whole year of dedicated time in the gym and on the bicycle path to get back to pre-op fitness levels. Something to think about if you're not sedentary. Not to mention the expense and time lost from activities while you're recuperating.

 

[dick0236]

I had a mechanical valve implanted, because, at the time, there were no other choices. If I had known then, what I know now, I still would have chosen the mechanical valve. I didn't know I would be on warfarin for life until the surgery was over. Warfarin IS NOT a problem, although you must develop a simple routine in taking, and monitoring, the drug. There is very little that I have been advised not to do by my docs....short of skydiving.

I am one of the longest surviving valve recipients because, in the l960s, this kind of surgery was considered "last chance" and I got very lucky. I was told then, my valve would last 50 years. Obviously, I didn't believe that......but it is becoming increasingly more clear that the valve will last 50 years +. That's good news for me....'cause, at my age I sure don't want to go thru THAT surgery again.

Do your homework, make an INFORMED decison and then get back to living a pretty normal life, regardless of which valve you choose.

 

[Fundy]

I chose tissue mainly because I believe that the "dosing MY diet" would be very ineffective with respect to having proper INR levels, and that changing to a more consistant eating schedule would be a difficult change.

For example, almost every week but not every week, I'll often go two to four days without eating much. Maybe one light meal a day. Whereas other days I may eat enough for four meals. Just eating when I feel hungry.

If the tissue valve ends up lasting 10 or more years for me then at a minimum that will give me ten years to develop a more consistant diet. Until then I felt I would be better off selecting a certain reop, than I would be with INR levels almost certain to be either high or low almost every week.