having my aortic valve redo on oct 24th!

[markp66]

Hi all

Just to let you know I'm having my failed tissue (mosaic...) valve replaced with a mech valve in just over a week. Slightly worried although my surgeon assured me redo's are only very slightly more dangerous than the first time. He even said people have had 2nd, 3rd redo ops without any problem as surgical technique, knowledge and technology is improving and that if a future mech valve with no anticoagulation or stem cell engineered valve that lasted forever came out then it would be easy for me to have another op (if it outweighed the risks of anticoagulation in old age). However, as I'm 27 I really don't wan't another op any time soon so I'm hoping to get at least 30-40 years out of this mechanical valve. Hopefully if I make it that long multiple redo's will carry very little risk (the way things have been going over the last 20 years make the next 20-30 years very exciting in technological advances) . I've been assured these valves last forever without complications such as pannus, thrombosis, endocarditis etc (apparently v rare with the 3rd gen mech valves) and that structural failure is basically 0%.

I'm guessing if valves from the 1960's have a 45 year history then the bi leaflet valves will come through the 50+ year mark when the time comes. Anyone know what the longest bi leaflet implant is so far? I heard over 30 years so far which is encouraging as they were only widely introduced in 1980+

Although I'm still slightly concerned about warfarin my surgeon mentioned that major valve complication, mortality rates are as little as 0.5% in patients under 50 with well managed INR. Pretty good odds if you ask me considering the outcome without surgery! However, he said almost certainly there would be an alternative to warfarin over the next few decades that would not only be easier to manage but far safer. He said pradaxa could be one of these (in younger patients) but there are bound to be advances on this... We shall see...! He also thinks the ATS and on-x valves will have a lower INR target range in the future (1.5-2.0) when taken with aspirin.

My surgeon still thought I seemed worried about the long term future (after my initial reading of less than encouraging long term internet stats a few months back) and again reassured me that yes, there are complications, life expectancy is bound to be shorter statistically because there are lots more things that can go wrong (stroke, bleeding, reops, endocarditis, dealing with other illnesses on warfarin etc) compared to the normal population, but this doesn't mean that it isn't possible to live a very long life. Sure, living until I'm 90 is probably asking a bit too much but 70-80 is certainly not out of the question. As long as I keep my promise to my girlfriend about getting married, having kids, grand kids then I'll be happy! One positive thing about heart surgery is that it definitely makes you realise how short life is and to make the most of every day. So many healthy people waste years forgetting that they only get one life before it is too late. For me, I'm going to live everyday the best I can.

 

[dick0236]

.......My surgeon still thought I seemed worried about the long term future (after my initial reading of less than encouraging long term internet stats a few months back) and again reassured me that yes, there are complications, life expectancy is bound to be shorter statistically because there are lots more things that can go wrong (stroke, bleeding, reops, endocarditis, dealing with other illnesses on warfarin etc) compared to the normal population, but this doesn't mean that it isn't possible to live a very long life. Sure, living until I'm 90 is probably asking a bit too much......

I thought that living to 50 was asking too much:redface2:. Now that I've crossed 75....90 doesn't seem that unlikely:confused2:.......although living to 90 will screw up all of my financial planning:tongue2:

 

[Jkm7]

Hi Mark,
I'm sorry to hear you are facing a second surgery but want to reassure you about having a second OHS.

I had two in four years and I promise you my second was so much easier on me than my first. I was in the same hospital (Mass General), same surgeon, many of the same nurses/support staff, techs etc and the moment I woke in CICU following my second surgery, I knew the truck had not hit me as hard this second time as it did the first.

I had half a sandwich less than 14 or so hours post op. I had four drainage tubes in me but was strong enough and clear headed enough to be able to walk out in the hall with my nurse. (She put the drain containers on the seat of a wheel chair and I held onto the handles.)

I was home four days and had a bump free recovery.
I am totally convinced that walking, walking, walking pre and post op make a very big difference for recovery. Even if you never walk much, force yourself to do so according to whatever instructions your surgeon gives you.

You'll do fine. The wait for the surgery really was about the worst part.
all best wishes.

 

[Bina]

Mark, I will put you on the VR calendar right now....Best wishes !

 

[markp66]

Thanks. Yeah I'm sure it will be fine. I was out within 4 days last time so hopefully won't be much different this time although I know getting the INR stable can add extra days onto the stay..! Hopefully all will be fine! I'm looking forward to getting it done and moving on with my life!

 

[Bina]

Good for you !! Move on.
My hospital kept me for 16 days while they adjusted my Coumadin dosing, but they let it rise slow and steady.

 

[ElectLive]

Mark - I think thorough preparation and a strong and positive attitude do make a difference, even if surgeons can't quantify it. Based on your posts here the last few months, you clearly have both strongly on your side, and when you add in experience, I would guess that there aren't many 27 year olds around better positioned for a good outcome both short term and long term. At least that's my non medical evaluaton anyway!

Best wishes and look forward to you sharing more positive posts in post surgery and recovery.

 

[markp66]

16 days! Wow. Well at least you were in safe hands in hospital. I thought they let me out a few days too early last time and felt a little on edge.

 

[Warfarinking]

I'm curious, can mechanical valves as well? or does this only apply to tissue valves? I had my aortic valve replaced with a mechanical valve a year ago (age of 22) and I'm a bit concerned now because I surely don't want to go through another ohs

 

[markp66]

Mechanical valves last forever. 200 years in fact. However, this doesn't mean they don't need replacing. Pannus, endocarditis, valve leakage around the stitching or thrombosis can all cause valve replacement. The good news is that although they happen the chances are pretty low. Nobody has had a bi leaflet valve implanted for longer than 35 years as they havnt been around that long. There are lots of people with the old ball/ cage valves who have had them for 40+ years so you should be confident yours will last a long time.

 

[Mentu]

Mark, I would offer you this thought. Statistical studies apply well to populations not to individuals. When you read those studies that suggest a more limited life span consider that those research papers did not study a large group of people just like you. Many of the people in the study were older or had other health problems that you will never have. Your long term survival depends on how you manage your health. Unless you are sloppy, you can live a normal life with even todays medications.

If you are concerned about living a long full life, don't smoke, get some exercise, eat well, manage your medication and stay out of cars. You can also improve your chances for living a long life by loving and caring for those close to you and living with a very nice dog or cat. Mark, as we here in VR know all too well, things happen to us that we do not expect but that is the way life is. The valve replacement improves our heart function; the rest is pretty much up to you. Live long and prosper.

Larry

 

[dick0236]

........ as we here in VR know all too well, things happen to us that we do not expect but that is the way life is. The valve replacement improves our heart function; the rest is pretty much up to you. Live long and prosper.
Larry

Very well said:thumbup:

 

[Lily]

Hi Mark - I haven't been on the site much recently and I see that you're relatively new to the site. Best wishes for a successful surgery. I'm sorry your valve didn't last longer. For you and for me. It's the same type of valve that I have. You've probably posted about this before but do they know in what's wrong with your valve? Have you had symptoms?

My cardios have said that taking care of your teeth and gums is really important for valve patients.

Again, hoping all goes well for you. Best wishes :smile2:

 

[markp66]

They don't know why it wen so quick but they did lots of blood tests for infections All came back fine so i guess its nothing to do with my teeth, gums. I think it may have just calcified quick due to me being 23 at the time. I knew id only ever get 8-10 years at most at 23. I've heard a few people with mosaic valves where they have failed earlier than expected. On the other hand some people, doctors say they are one of the best, longest lasting..! Who knows. I hadn't prepared myself for a reop so soon, 2 ohs in 4 years is pretty bad! But then again some people have it much worse and can have 3 within a few months so im not complaining. I'm just glad we live in a time where this type of surgery is very common and safe.

 

[markp66]

Lily, I've just checked out an old post you wrote. My valve gradient suddenly and increased from 20ish to 52 in the space of a year! That year I moved to London and life was slightly more stressful but I don't think this had anything to so with it. I was also exercising a lot more and keeping fit, again something that is reported to have a major impact on the valve. The only negative report about the mosaic is a very small. It is one of the most used valves and I'm sure there are thousands of people who will get 15-20 out of this valve who are a bit older. Hopefully your valve will hold out
for a few more years..

I also see that you had/ have pulmonary hypertension and had coarctation of the aorta. I don't have these problems but I remember reading a while back that pulmonary hypertension can be caused by coarctation even if repaired years before.

 

[Lynlw]

Lily, I've just checked out an old post you wrote. My valve gradient suddenly and increased from 20ish to 52 in the space of a year! That year I moved to London and life was slightly more stressful but I don't think this had anything to so with it. I was also exercising a lot more and keeping fit, again something that is reported to have a major impact on the valve. The only negative report about the mosaic is a very small. It is one of the most used valves and I'm sure there are thousands of people who will get 15-20 out of this valve who are a bit older. Hopefully your valve will hold out
for a few more years..

I also see that you had/ have pulmonary hypertension and had coarctation of the aorta. I don't have these problems but I remember reading a while back that pulmonary hypertension can be caused by coarctation even if repaired years before.

Again I'm sorry to hear you need another surgery so soon, I know that just sucks, no other way to put it. But to your conerns if it helps at all Justin had 5 open heart surgeries by the time he was 19 and his surgery at 19 was to replace the conduit he got with his pum valve when he was 17 that was almost completly blocked by scar tissue and other problems.. As long as your surgeron has alot of experience doing REDOs as he said the risks should NOT be much higher than a first time surgery and the good news as Justin says is even th REDOs can be harder for the surgeon the recover wasn't any harder for him, actually he was home sooner in his later surgeries than he was the earlier ones.

I dont't think exercising and keeping fit had anything to do with your valve failing so early, or even to have had major impact on the valve. Yes tissue valves normally dont last as long in younger people, but that has more to do with the body's chemistry,(maybe something related to the ability to grow and heal bones) but since 4 years is a pretty short time for even people in their 20s, I hope they are really checking out your valve to see if there is anything else going on or send it out if anything doesn't look normal.Was your gradient in the 20s right from the beginning? It will be intersting to see what size valve you get this time and if it is a little bigger that your first one. Chances are your just a really good calcifyer and not from something like pannus growing or even related to the Mosaic valve failures, but I would want to know for sure if it was me.

 

[markp66]

Thanks lyn. What I find odd is that the grading went from 22 to 50 in a year. Pannus, calcification etc normally take time and are gradual. From what I've heard there are many people who have had mosaics where the gradients have doubled in a year. I also found out that the mosaics can give high gradients to start off with. My surgeon said he potentially may fit a larger valve in although this will mean enlarging the aoric root which I'm told is very easy these days especially for a congenital surgeon who has done lots of them. I will ask him about the valve and getting it checked out if possible but until they open me up they won't be able to tell.

My surgeon has done many redos before and he said on many occasions he has to replace failed tissue valves in young patients, some as soon as 2 years. I'm sure it all depends on the person and I'm sure there are many young people who get 10 years, maybe even more with tissue valves. He did seem a little confused as to why I was given a tissue valve as i didnt play any contact sports etc and he said the complication rate with warfarin in younger patients is extremely low. I'm hoping he is right about that! If the reop risks didn't increase each time I'd probably go for a tissue valve again as I was out of hospital after 4 days and back to normal after 3 weeks last time. However, at this point in time it's not worth the risk and I'd rather get a good 20-30+ years with a mech valve and see what's around at that point... By that time I'm also hoping a better alternativ to warfarin will be available.

 

[markp66]

I thought that living to 50 was asking too much:redface2:. Now that I've crossed 75....90 doesn't seem that unlikely:confused2:.......although living to 90 will screw up all of my financial planning:tongue2:

Dick, I'm sure you will make 90. You have made 45 so another 15 doesn't sound unrealistic. And I'd rather be screwed financially and alive!

 

[Lynlw]

Thanks lyn. What I find odd is that the grading went from 22 to 50 in a year. Pannus, calcification etc normally take time and are gradual. From what I've heard there are many people who have had mosaics where the gradients have doubled in a year. I also found out that the mosaics can give high gradients to start off with. My surgeon said he potentially may fit a larger valve in although this will mean enlarging the aoric root which I'm told is very easy these days especially for a congenital surgeon who has done lots of them. I will ask him about the valve and getting it checked out if possible but until they open me up they won't be able to tell.

My surgeon has done many redos before and he said on many occasions he has to replace failed tissue valves in young patients, some as soon as 2 years. I'm sure it all depends on the person and I'm sure there are many young people who get 10 years, maybe even more with tissue valves. He did seem a little confused as to why I was given a tissue valve as i didnt play any contact sports etc and he said the complication rate with warfarin in younger patients is extremely low. I'm hoping he is right about that! If the reop risks didn't increase each time I'd probably go for a tissue valve again as I was out of hospital after 4 days and back to normal after 3 weeks last time. However, at this point in time it's not worth the risk and I'd rather get a good 20-30+ years with a mech valve and see what's around at that point... By that time I'm also hoping a better alternativ to warfarin will be available.

Yes, it's confusing when things go bad fast, but sadly itt happens. Altho 22 is close to moderate stenosis, that general they call it from gradients of 25 and up, so probably either the valve was a little small from the beginning or whatever the problem was had already started. But yes I agree usually calcification is a little more gradualt than that. But as yo know all kinds of things can happen that aren't expected. Justin got a bovine valve with 2 dacron conduits (on the pulmonary side, where most reccomend tissue) in 05 when he was 17, his 1 year post op echo was perfect, no gradient, less than 6 months later his gradient was almost 90, since they couldn't get good looks at the problem with echos or even an MRI everyone was thinking his valve went bad, since he had a history of building calcification quickly (even patched made of his own tissue), but we were all surprised when the cath showed the valve looked great, the problem was the dacron conduit (graft) that SHOUD have lasted basically forever. It ended up being blocked on the seam from scarring/pannus which made it more arro then because of where his heart is in his chest, his sternum was squishing it. Anyway about 2 years after he got it one of his conduits was replaced when they had him opened they ended up leaving his valve alone since it still looked brand new.

I'm glad to hear your new surgeon is a congenital one, they usually have the most experience with REDOs and even multiple REDOs. If they can put in a bigger valve that sounds like a good idea, even if it turns out you build pannus or scarring the bigger the opening you start with the more room to play so to speak IMO.

But yes it does seem like around here to ME at least, many of the valves that need replaced sooner than expected or even have higher gradients early tend to be Mosaics. Its kind of confusing tho since Mosaics are pretty much "new improved' Hancock which has a great record from durability, so it could just be a coincidence.

Either way. Good Luck. i hope this is the last time you ever have to talk to heart surgeons.

 

[Lily]

They don't know why it wen so quick but they did lots of blood tests for infections All came back fine so i guess its nothing to do with my teeth, gums. I think it may have just calcified quick due to me being 23 at the time. I knew id only ever get 8-10 years at most at 23. I've heard a few people with mosaic valves where they have failed earlier than expected. On the other hand some people, doctors say they are one of the best, longest lasting..! Who knows. I hadn't prepared myself for a reop so soon, 2 ohs in 4 years is pretty bad! But then again some people have it much worse and can have 3 within a few months so im not complaining. I'm just glad we live in a time where this type of surgery is very common and safe.

Oh, I'm sorry, Mark :redface2: I could have worded what I wrote about dental hygiene better and I didn't mean it as any sort of criticism. I guess I didn't get it written out clearly but I meant it as a positive encouraging comment for the future, within the context of your comments about the hopefully excellent longevity of your next valve. It's about the only advice my cardio has given me about valves and I assumed he meant it in the context that all valve patients want to try to avoid BE. Again, sorry.

And thank you for the info about pulmonary hypertension and coarctations.

Best wishes :smile2: