Mid-Twenties Aortic Valve Replacement

[Agian]

Someone on the forum recently raised pannus as an issue. I wonder how common it is.

 

[pellicle]

Someone on the forum recently raised pannus as an issue. I wonder how common it is.

http://m.circ.ahajournals.org/content/119/7/1034.full
Circulation. 2009; 119: 1034-1048 doi: 10.1161/​CIRCULATIONAHA.108.778886

Pannus and thrombosis may be present alone or in combination and cause acute or subacute valve obstruction. The incidence of obstructive valve thrombosis varies between 0.3% and 1.3% per patient-year in patients with mechanical valves.50,63

I am guessing the variations may be related to modern valves having been designed to attempt to deter pannus

Also this may suggest why my surgeon is not interested in me reducing anti-coagulation therapy
Journal of the American College of Cardiology 1991

http://www.sciencedirect.com/science/article/pii/S0735109710801780

Of 63% of patients in whom coagulation variables were available at the time of obstruction, 70% were receiving inadequate anticoagulant therapy. In 63% of the procedures the patient was in New York Heart Association functional class IV

.

 

[Agian]

Thanks for the article Pel. It seems that the main reasons for mechanical valve 'failure' are pannus and clots.

Scar tissue can creep into the valve orifice from the annulus. I suspect there may be some surgeons out there that have tricks up their sleeves to minimise this risk. I think I read somewhere about sewing the valve into the Dacron tube, used to replace the aortic aneurysm (then again, I might be imagining it).

 

[Lynlw]

hi john, do your homework and make your choice, which ever valve you choose has no life time promise,but mech is the best choice on that score to last longer, there have been a few on here with mechs who have needed re ops,its a tough choice and remember there is no bad choice, personally i didnt want to be on warfarin and the problems that can occur with it, so i choose tissue and am very happy with that,but you are younger so you have got to put that into the mix, am sure you will make the right decision,

First off Hi, John I'm srry to hear you needed surgery now, On the plus side you go to one of the very best centers for heart surgeries. also At least you have had a year to consider your choices, I personally would go with whatever your "gut" feeling is telling you. If the thought of a tissue valve and most likely chance of at least one more Open Heart surgery , and the risk of morbitity and mortality that go along with each surgery gives you more peace than the thoughts of decades on Coumadin or whatever anticoagulant MAY be available in the coming decades. then I would go with your gut feeling and get a tissue valve.

On the other hand if you rather the risks (and there ARE risks even in well managed patients) from choosing a mech valve and hopefully avoid a REDO and the risks of clots and bleeds that go along with that instead of the risk of repeat surgeries when it needs replaced, than I'd go mechanical. You are not necessarily signing your self up for muliple surgeries, IF you choose a tissue valve now when it needs replaced (the odds are very high you will out live a tissue valve considerring your age) then you will make the choice then based on what is available to you when the time comes.,,,maybe you will choose mech then..again maybe not.

Most everything you read here are just opinions from non medical people and you can find bad results which ever way you look, yes there are younger or older people whose tissue valve need replaced much sooner than they hoped, wether because the valve calcified or the surgeon put too small a valve in, or their valve is doing ok but they have an annuerysm it and some people who choose tissue valves do end up on long term coumadin- altho to be honest I dont remember that many from the members here, there used to be a poll, but it happens.

There are also people here who chose mechanical to hopefully avoid any more heart surgeries who needed them anyway, because of pannus or clots or too many bleeds or even stitches didnt hold, or infections etc but the chances of having a REDO with a mech valve are lower than if you have a tissue valve and your less than 50 ish. Also just like there are many people in the real world, there are a few people here who had bleeds after procedures, or GI bleeds or brain bleeds who were doing fine for years and managed their INRs well. There still is a risk even with the newer valves and the developement of the INR and home testing.

One other thing I would suggest since you go to Brigham, I would discuss the possibility down the road when a tissue valve wore out the chances of being able to replace it by cath and avoid OHS.(Valve in valve) I would never count on it, but it's a possibility and things are moving along quite well in the field. IF you are choosing tissue, I would also discuss if there are any tissue valves in use today that would make it easier to implant another valve in or more importantly any valves that they are finding so far that make percutaneous valve implants more difficult. I would go for the valves they are having the most successs with now as long as they are equally good in all the other considerations.
Even planning on having another OHS, the chances a of a full recovery are even now very high, altho nothing is 100%
.

Good luck with whatever choice you make

 

[shanwow1]

Another newbie, in my mid-twenties (26) and I'll likely need surgery in the next year or 2 to replace my bicupsid aortic valve. I have some time to research and make a decision re: tissue or mechanical, but thought I would share my current thinking. I am leaning heavily towards mechanical. When I first was diagnosed 3-ish years ago and started looking into valves I thought tissue all the way because I could not fathom being a slave to medication for the rest of my life. But the more research I did, and especially reading first-hand experiences of being on Warfarin from people on this forum, I am not nearly as afraid of it anymore. I intend to stay active and participate in things like softball and snowboarding (all things being well once I recover), but will be careful of taking unnecessary risk. No contact sports, no jumps while snowboarding, always wear a helmet etc. My cardiologist mentioned the valve in valve future option if I did want to go tissue, but I can't imagine having the feeling of a valve wearing out again with all the associated symptoms. It's been a little over 3 years in the waiting room for me and I'm already going crazy. Obviously there are no guarantees of not needing another surgery even if I do choose mechanical, but even the valve in valve option requires another procedure, if not OHS. And if you think about it, that's a lot of procedures 10-15 years apart if we are expected to live to a ripe old age!

In the end you have to choose whatever feels right for you and there are pros and cons to each option. If any of my thinking is misguided, somebody please let me know, I'm still a newbie after all! But I just thought I would share the thought process of someone who is similar in age to you.

Cheers!

 

[clay_from_nj]

if I did want to go tissue, but I can't imagine having the feeling of a valve wearing out again with all the associated symptoms.

That was my #1 reason for going mechanical, as I had already suffered from CHF before the valve replacement.

 

[Duffey]

First off Hi, John I'm srry to hear you needed surgery now, On the plus side you go to one of the very best centers for heart surgeries. also At least you have had a year to consider your choices, I personally would go with whatever your "gut" feeling is telling you. If the thought of a tissue valve and most likely chance of at least one more Open Heart surgery , and the risk of morbitity and mortality that go along with each surgery gives you more peace than the thoughts of decades on Coumadin or whatever anticoagulant MAY be available in the coming decades. then I would go with your gut feeling and get a tissue valve.

On the other hand if you rather the risks (and there ARE risks even in well managed patients) from choosing a mech valve and hopefully avoid a REDO and the risks of clots and bleeds that go along with that instead of the risk of repeat surgeries when it needs replaced, than I'd go mechanical. You are not necessarily signing your self up for muliple surgeries, IF you choose a tissue valve now when it needs replaced (the odds are very high you will out live a tissue valve considerring your age) then you will make the choice then baseed on what is available to you when the time comes.,,,maybe you will choose mech then..again maybe not.

Most everything you read here are just opinions from non medical people and you can find bad results which ever way you look, yes there are younger or older people whose tissue valve need replaced much sooner than they hoped, wether because the valve calcified or the surgeon put too small a valve in, or their valve is doing ok but they have an annuerysm it and some people who choose tissue valves do end up on long term coumadin- altho to be honest I dont remember that many from the members here, there used to be a poll, it happens.

There are also people here who chose mechanical to hopefully avoid any more heart surgeries who needed them anyway, because of pannus or clots or too many bleeds or even stitches didnt hold, or infections etc but the chances of having a REDO with a mech valve are lower than if you have a tissue valve and your less than 50 ish. Also just like there are many people in the real world, there are a few people here who had bleeds after procedures, or GI bleeds or brain bleeds who were doing fine for years and managed their INRs well. There still is a risk even with the newer valves and the developement of he INR and home testing.
One other thing I would suggest since you go to Brigham I would discuss te possibility down the road when a tissue valve wore out the chances of being able to replace it by cath and avoid OHS.(Valve in valve) I would never count on it, but it's a possibility and things are moving along quite well in the field. IF you are choosing tissue, I would also discuss if there are any tissue valves in use today that would make it easier to implant another valve in or more important and valves that they are finding so far that make interveneous valve more difficult. I would go for the valves they are having themost successs with now as long as they are equally good in all the other considerations.
Even planning on having another OHS, the chances a of a full recover are even now very high, altho nothing is 100%
.

Good luck with whatever choice you make

Is this the link to the poll you mentioned?
http://www.valvereplacement.org/forums/showthread.php?26292-Which-nonmechanical-valve-did-you-have-implanted-and-are-you-using-coumadin-for-afib&highlight=coumadin+and+tissue+valves+poll

 

[neil]

agree with all you said lyn, good post, apart from the fact you missed out on, if you have a piggy valve, bacon is of limits ha ha

 

[extraordinary]

Hello,
so glad that i've read your post, I'm in the same exact condition you are in and I'm in the age of 24 and I'm gonna need my valve replaced very soon and it would be my 3rd surgery, I came from Kuwait but right now I'm in Boston, and seeing a Dr. in Brighams and Womens hospital as well ..
I'm in the same boat you are as i don't know which would be a better choice for me and my life each has pros and cons
is this your first surgery ?
are you having any symptoms ?

 

[The Thief]

Hey BostonJohn. I'm 30, and I just got my aortic valve replaced 4 weeks ago; On-X Mechanical valve w/ lifetime bloodthinners. I'm a rockclimber, backpacker, canyoneerer, cyclist, adventurer... I'm confident that I can continue my adventures on this medication using caution and common sense. Check out my blog for more info on how I came to this decision: http://robovalve.wordpress.com/

 

[BostonJohn]

Well, I am officially two weeks out from surgery (March 25th at Brigham and Women's) and it is starting to get real. In talking with my family and medical team, I decided to go with a tissue valve. I am not anywhere near as anxious about the surgery as I thought I would be at this point, but I am sure that will change as it gets closer. I have definitely found all of the different forums on this site to be extremely useful over the past year or two. Does anyone have any last minute advice for me? Is there one specific piece of advice that was most useful heading into the procedure, or one item you had with you at the hospital afterwards that made a big difference?

 

[ChicagoMammy]

This sounds stupid but my big two are deodorant and socks. The hospital has them, but I want me own. Of course you'll need help with putting on both, but dignity goes by the wayside.

 

[Boston Tiger]

Hey John,

You are going to be in great hands at the Brigham. The staff there is great and the rooms are very nice. You will be amazed at how quickly the nurses will have you up out of your bed and into the nice chair in the room. The one bit of advice I have is to order your food before you are really hungry, since it takes a good 30-45 minutes for it to make its way up to your room across the street. If possible, have something that can help fight the boredom between naps. You can only watch so much daytime TV before going stir crazy!

Best of luck!

 

[Superman]

23 years on warfarin and counting. Started taking it just before I turned 18 when I got my first mechanical valve. A bit over 4 years ago, I had a second OHS due to an aortic aneurysm. I did replace the valve, but not due to any issues with the old. Just wanted to get one with a one piece valve/graft from St. Jude. Stuck with mechanical. I'm not as active as some here, but not due to any valve fears. I've gone downhill skiing, I used to mountain bike regularly, I've broken bones. The only time I've ever had an issue was when my INR got extremely elevated due to a brief love of cranberry juice (of all things). I've coached little league (coach pitch) and taken line drives off shins and ribs (yes, I can catch - but they're only 40 ft away!). My bruises in general are much prettier than a non-warfarin person - but no real issues.

Personally any anxiety associated with warfarin, in my mind, would be minimal compared to knowing multiple re-ops were a certainty. Yes, I had one - but I wouldn't want to know a 3rd (I was 36 at my second), 4th, or even 5th OHS were coming.

Pretend for the sake of arguement I got on average 15 years per tissue valve.
17, 32, 47, 62, 77 - and that might be my last. No thanks.
If it were only 10 years.
17, 27, 37, 47, 57, 67, 77 - Give me mechanical everytime.

Considering the time I had my first one done (1990), I would certainly be looking down the barrel of my 3rd OHS by now if I hadn't had it already.

 

[Superman]

As far as advice, if you have a nice big recliner that is comfortable sleeping in, get it moved somewhere in the house where you would like to sleep. Not everyone is comfortable making a quick transition to a flat bed after getting out of the hospital, and this would give you an alternative. I chose to sleep in a recliner for a couple weeks after coming home. I just found it more comfortable. Even if you don't sleep in it, a nice big chair is good to rest in between walks and other rehab.

Do your breathing exercises and cardiac rehab.

 

[BostonJohn]

Thank you all for the advice! I had all of my pre-op testing and consults today and should be ready to go a week from today!

 

[neil]

hi john ,good luck mate and you will find that this is not as bad as your mind leads you to believe, what you getting a porky pig or a mo cow ?

 

[BostonJohn]

I only know that I am getting a tissue valve, I am not 100% sure if it is bovine or porcine...

 

[workmonkey]

Hi BostonJohn -

I had surgery a few weeks ago (February 25th) to repair my aortic aneurysm and bicuspid valve. The actual surgery is over before you know it (it is literally like one-second of mind time). As far as the immediate days after, here are a few simple things I learned:

• Have lots of simple, easy-to-eat snacks. Your appetite will be spotty, so all you'll want initially are crackers, nuts, bits of chocolate, bread, gatorade, juices, etc. I had friends bring smoothies and it was the best thing in the world. It isn't that the hospital food is bad, it is more that they are bringing big meals (chicken breast with broccoli or omelettes or grilled salmon) that is simply isn't easy to eat or appetizing after surgery.

• With all the pills you'll be on, books/magazines aren't helpful .. Your attention span will be low. Try to schedule as many visitors as possible, and of course bring your laptop with a netflix subscription if possible.

• Start walking as soon as they'll let you. You'll feel out-of-breath and tired as you do it, but once you get back to your room, you'll get a rush of energy that immediately makes you feel better.

• Bring pajama pants and/or a comfortable sweatshirt. You'll want to walk around in something other than the hospital gown.

• Bring a comfortable pillow or neck pillow if you can. I didn't, but wish I had, as I could never prop myself up in a decent way for sleep.

You'll be out before you know it. The doctors, surgeons and nurses really do have this down to a routine. I was one of three they did that day. Big for us, routine for them. You'll feel great when this is behind you.

Best of luck and see you back on the forums soon.

 

[neil]

brill post workmonkey