Second time around OHS...Could use some support/help

[CoryGenius]

I just spent a couple of hours reading this forum getting a lot of questions answered. However, what I’m finding out is that I am uninformed about my actual heart condition. I could use some help figuring out what questions to ask my cardiologist and also your feelings towards the options I have to choose from for my next heart surgery.

About 3 years ago I was hospitalized and diagnosed with endocarditis. This was when they found out about my Bi-cusped Aortic valve and aortic insufficiency. I was in the hospital for 8 days and then sent home to follow up with two months of home infusions of antibiotics.
After that I had regular check ups with my cardiologist to check the size of my heart and was informed that I would need surgery once my heart reached a certain size/state. My cariologist said some people with my condition never have to have surgery and only time will tell when and if I would have to have surgery.

In June of 2011 I went in for a routine echo and my cardiologist said I was time to think about surgery. We discussed the options of replacement vs repair and went with the Valve Sparing Root surgery and was scheduled for surgery one week later.
My surgeon performed the surgery with great confidence that I would never have to have OHS again (about a 3% chance)
Well here’s to the 3%.....At my 6 month check up I got the news that the surgery failed and that I would have to have another surgery. My heart valve has relapsed to its prior condition and then some. With the added bonus of stenosis of the aortic valve.
Now I am going in for my second OHS to replace my aortic valve. I just celebrated my 30th birthday am forced to make the decision of a mechanical valve or a tissue valve and have heard the pros and cons of both. I’m leaning toward the ON-X valve, because of my age and lessening the chance of having another surgery. I am totally freaked out about cumadin and really worry about having to take blood thinner for the rest of my life.

My general practitioner said I should reach out to people who are/have went through a similar situation as me and maybe it would help with my anxiety. I think any comments would help.

 

[Bill B]

I will just say that freaking out over warfarin is generally not justified. I wasn't too thrilled about the prospect of taking any drug, let alone warfarin, for the rest of my life, so I debated the tissue vs. mechanical issue until the 11th hour. But for me and nearly everyone who has accepted it, warfarin has been a non-issue or at most a very minor one. It has not restricted my life in any way. I road race cars, ride motorcycles, ski, whatever, with zero change in my lifestyle. I shave with a blade razor - most people do not understand that bleeding time from cuts is not significantly affected by warfarin - that is primarily determined by platelets that warfarin does not affect.

Once a month I get a blood test. I hate needles. But I have found most phlebotomists are so darn good I have become completely comfortable with this. And at most labs if you find one blood drawer who is exceptionally good, you can request them each time you go. You can tell I really had a thing about needles. I almost passed out one time many years ago, but now that I am on warfarin, that issue has completely faded away. I won't try to persuade you further which way to go.

I'm sorry to hear your repair did not hold. I wouldn't be too happy either. Heck, I'd be pissed. And the prospect of another surgery is understandably disturbing, although you should know that unless you have some other serious underlying medical condition, these surgeries, whether first or second, are incredibly successful, so you will do very well. The anxiety is not justified. I know it's hard to control, but unless worrying about something affects the outcome, it is a waste of energy. Once I recognized that the odds were overwhelming that I was going to do very well after surgery, I stopped worrying. True, you were given high odds against failure of your repair and it still failed, but that does not change the odds of you doing very well after AVR. And worrying does not change those odds, so why worry? Focus your attention on valve selection and whatever else you need to do to get ready for this operation. Since you have already had OHS, you do know what to expect.

Thank your lucky stars that you live in this age and that you have prospects for a completely normal lifespan after you have your AVR. Fifty years ago, you would be facing a lot of suffering from developing heart failure leading to an early death. My BAV was killing me and I didn't know it. It wasn't discovered until only a year before I HAD to have it fixed. Now I am as good as new. Hence, I am a VERY happy man. I think ultimately you will be as well.

 

[CoryGenius]

Thanks for your kind and wise words of wisdom!

 

[Jkm7]

I feel awful for you to have to go through this again so soon. But don't waste time looking for 'fair'. There isn't any.

I just want to add that your young age and from the sounds of your post, your otherwise good health is a huge plus for you. This is a remarkably successful surgery most of the time but you fell into that small percentage that needs a re-do. I am older than you and had two OHS four years apart. Because I was in good general health, take care of myself etc, my second surgery was actually easier on me than my first. I had a bump free, full recovery and the moment I woke in CICU, I knew that truck had not mowed me down quite as hard as the first time. I was at same hospsital, same cardio, same surgeon and was driving 2 1/2 weeks post op the second time around. (Sure, just short runs but nevertheless, with my cardio's permission.)

Attitude is very important and positive thinking is a big bonus. Just leave no room in your mind for anything but postive thoughts about getting this done and behind you so you can get on with enjoying the things you love.

Most of us agree, the wait for surgery is the hardest part of this experience and we'll help you through that wait in any way we can.

Only those who have walked this OHS walk really 'get it'.

Let us know how we can help..... any questions; any way we can be there for you.

 

[dick0236]

I am totally freaked out about cumadin and really worry about having to take blood thinner for the rest of my life.
.

I had surgery at age 31, at a time when "mechanical" was the ONLY option. I would make the same choice today, if I were 31 again:thumbup:. Wasn't told about coumadin(warfarin) until the surgery was over. I have lived a very active life and have found warfarin to be a "non-issue" except it does require me to follow a simple regimen....take the pill as prescribed and test routinely. The ON-X valve has been implanted into many on this forum and I am sure they will jump in with their opinios. Stick around, this forum is a very good place for info, support and opinion.

 

[LJM]

Hi Cory,
So to hear you have to go through this again 9 weeks ago i underwent my 4th OHS & had a mechanical valve placed & i am on warfarin. I am 40 years old & i have not had to change much, except i now i have an excuse to not eat green leafy foods. :thumbup:
I get my blood checked, I too hate needles, but the lab i go to is wonderful. Wishing you all the best & keep us posted.

 

[Superman]

I wouldn't be overly concerned about warfarin. I received my first mechanical valve three days prior to my 18th birthday. I'm 39 now. I've been getting checked at the lab for 21 years and just now received my home monitor, so I no longer need to get a needle stick anymore. Just a little finger poke. I did have a re-op even with the mechanical, but it had nothing to do with the valve. I had to have my ascending aorta replaced with a graft at 36, and had a shiny new valve thrown in for good measure. I went with Jt. Jude both times. I went with the one that's been around for a long time and offered a graft, valve conduit rather then having to sew a graft onto the valve like On-X would have required at the time.

Good luck with your decision. Having lived with mechanical for so long, I'd make clicking a bigger factor than warfarin as a reason to go tissue, but everyone is different there too. Some people can barely hear theirs. My first one was rather quiet, but with the graft, this clicking has been much louder. Beats a re-op though.

 

[chaconne]

I wouldn't let Warfarin stop you from getting a mechanical. I got the On-X aorta valve with the root and conduit all as one unit (ONXAAP). The clicking is barely audible most of the time, and I have very good hearing. Warfarin is usually fine if you stay on top of your INR.

 

[yotphix]

Sorry to hear your repair didn't work out. You'll be fine though. They'll put the new valve in for you, and if you go mechanical that will likely be the last time you'll have to revisit that issue. The warfarin is no big deal for must of us, certainly hasn't been any hassle for me.
Best of luck with things and do your best to keep your spirits up. It makes a world of difference to a recovery. One thing which sounds a little hokey, but has been demonstrated over and over again to improve mood and outlook is to make a list, mentally, or even better physically, of everything you ought to be grateful for. Just for kicks, I ask people to do this sometimes, after explaining the purpose. Almost everyone I try it on begins to smile almost immediately!
You'll be through it and looking back before long.

 

[sensei Ade]

Hi Cory,
Having read your post, anyone would feel anxious in your situation, but you have to weigh things up here and you'll feel a hell of a lot better. The warfarin (as we call it on this side of the pond) is a non issue. I know what things to avoid and I home test regularly using Coagucheck strips. I've hardly had to change my lifestyle at all and I'm very active doing karate, playing field hockey and working out down the gym. The On-X valve is well worth looking into, have a look at my previous posts based upo my direct contact with On-X themselves. The valves are designed to last 100 years +. OHS is such a routine procedure these days and you'll be abolutely fine. Hold onto to all these positives, you have a great life ahead of you .

All the best

Sensei

 

[Ovie]

Hi Cory, although this is only my second post, and I'm in the waiting room for only my first OHS at the age of 25. I and I'm sure so many others here know what you're going through anxiety wise.

I've come to this site seeking advice myself so I can't really give you any myself since I'm a newbie to this all. I will say one thing, and some days are harder than others. I'm not religious at all, and to those that are I mean no disrespect. But I feel these are just the cards we are delt in life. You're not always going to get Aces. It's a silly way of looking at it, but it's something that needs to be done and although I feel Anxiety is the worst feeling in the world, it's better than the alternative.

Anyways good luck with everything, try to keep your chin up as hard as it is to do sometimes.

 

[sarahsunshine]

Hi Cory,

I'm glad you found us, but sorry you had to.

My step son had his 3rd OHS about a month go. He had his mitral and aortic valve replaced, as well as his ascending aorta. All were done with On-X and his surgeon believe that it should last him at least another 88 years.

My step son has been on warfarin since he was 1 week or so old. Some people have issues with regulating vitamin K with when on warfarin. Many people find, however, that maintining relatively high levels of viatmin K actually helps maintain INR levels, rather than minimizing vitaminK intake. It definitely is the case for my step son.

Also, slef regulation and monitoring of warfarin is usually an option these days. If it were up to me, this is what I would do (and we do with my step son). This is a good option because it takes away frequent trips to the lab, the issue of needles (it's a finger poke instead), and if there is a concern (nose bleeds, lots of bruising), then you can test immediately to check INR levels and get an immediate result, rather than calling the lab and receiving the results a day later. Also, we have found that we know how to regulate INR with warfarin for our life style better than any lab that we work with.

Anyway, sorry you need to come here nad that your first surgery didn't work, but there is a light in the tunnel ahead, and it's NOT an oncoming train!

Keep your chin up.

INR monitors (Coaguchek XS in ourcase) cost about $400 4 years ago. This was covered completely by my insurance. Testing strips can be expensive ($10 each), but most insurance covers them (my husband's didn't cover the monitor but covers 80% of the strips, mine covers all the strips). Definitely worth it in my opinion, even if we had to pay for the machine and 20% of strips.

 

[jarno1973]

Hi Cory,

I am afraid I am in a similar situation as yourself. I am a little bit older than you, but at 38 consider myself way too young to have lot of restrictions in life. Therefore I choose for a tissue valve which was placed during OHS 6 months ago. I thought I was doing well except for some small issues (about which I made some inquiries on the forum). However, today I visited my surgeon and had my first echo. It turns out that the valve is not performing well and it looks like already after 6 months the valve is calcified. The shock was very big and we actually did not immediately talk about a re-op but it seems pretty clear to me that it will not take long before this will have to take place. I was asked to come back in 2 months but now even feel that 2 months maybe too long if this valve has degraded so much in just 6 months.

I will continue to tell some more about my history and valve choice. I have been planning to share this earlier but it may turn out to be a long story. In my first encounter with a heart surgeon we discussed both mechanical and tissue valves. At the time I thought I was still long away from surgery and only wanted to be informed about the options. After this conversation I immediately felt that the a tissue valve would be most suitable for my active lifestyle and thought I would be able to get at least a good number of years of trouble free living out of it.

Not long after that it turned out that I actually needed the surgery. I ended up in another hospital. The hospital and the surgeon turned out to be very experienced and I decided to go with them. In my initial meetings with the surgeon we discussed both tissue valves and mechanical valves. I made clear that my preference would be a tissue valve which was not a problem according to the surgeon. When I was admitted in the hospital for catheterization a week ahead of the surgery the surgeon came by and told I would have to have a mechanical valve because at my age no surgeon would recommend to go for tissue because it would require at least another OHS in future. I tried to explain that I preferred a tissue valve but I don’t think anyone would really argue too much with a well experienced heart surgeon. I went home feeling bad as I felt pushed into taking a mechanical valve and I was afraid I would wake up with a mechanical valve regretting it. Once at home, now 4 days before my appointment for surgery, this totally freaked me out as I was mentally prepared for a tissue valve and not for a mechanical valve (including warfarin, clicking sound, etc). I decided to cancel my appointment and talk to the first surgeon (this surgeon also has a very good reputation and is considered one of the best in Thailand) before making a decision. This surgeon understood my concerns and did not discourage to opt for a tissue valve. He even mentioned life times of possibly 20 years for the new anti calcification treated valves. Not long after this I had OHS and a St. Jude Biocor valve was placed. I was hoping to get 20 but at least expecting to get close to 10 years out of it. After the OHS turned out to be less bad than expected I definitely felt I hade made the right choice and was just waiting for everything to be like the old days. Well, after today's news I realize this time may never come.

I think that for the next OHS also this surgeon will push for a mechanical valve. If there is basically no choice it will make it easier for me to accept the mechanical valve but I am still not keen on it. If somebody could guarantee me 10 years on a tissue I think I would still go for that. Since Warfarin and noise are the 2 main disadvantages and nothing can be done about the Warfarin I will most likely be looking for the quietest mechanical valve around.


regards,

Jarno

 

[Lynlw]

Hi Cory,

I am afraid I am in a similar situation as yourself. I am a little bit older than you, but at 38 consider myself way too young to have lot of restrictions in life. Therefore I choose for a tissue valve which was placed during OHS 6 months ago. I thought I was doing well except for some small issues (about which I made some inquiries on the forum). However, today I visited my surgeon and had my first echo. It turns out that the valve is not performing well and it looks like already after 6 months the valve is calcified. The shock was very big and we actually did not immediately talk about a re-op but it seems pretty clear to me that it will not take long before this will have to take place. I was asked to come back in 2 months but now even feel that 2 months maybe too long if this valve has degraded so much in just 6 months.

I will continue to tell some more about my history and valve choice. I have been planning to share this earlier but it may turn out to be a long story. In my first encounter with a heart surgeon we discussed both mechanical and tissue valves. At the time I thought I was still long away from surgery and only wanted to be informed about the options. After this conversation I immediately felt that the a tissue valve would be most suitable for my active lifestyle and thought I would be able to get at least a good number of years of trouble free living out of it.

Not long after that it turned out that I actually needed the surgery. I ended up in another hospital. The hospital and the surgeon turned out to be very experienced and I decided to go with them. In my initial meetings with the surgeon we discussed both tissue valves and mechanical valves. I made clear that my preference would be a tissue valve which was not a problem according to the surgeon. When I was admitted in the hospital for catheterization a week ahead of the surgery the surgeon came by and told I would have to have a mechanical valve because at my age no surgeon would recommend to go for tissue because it would require at least another OHS in future. I tried to explain that I preferred a tissue valve but I don’t think anyone would really argue too much with a well experienced heart surgeon. I went home feeling bad as I felt pushed into taking a mechanical valve and I was afraid I would wake up with a mechanical valve regretting it. Once at home, now 4 days before my appointment for surgery, this totally freaked me out as I was mentally prepared for a tissue valve and not for a mechanical valve (including warfarin, clicking sound, etc). I decided to cancel my appointment and talk to the first surgeon (this surgeon also has a very good reputation and is considered one of the best in Thailand) before making a decision. This surgeon understood my concerns and did not discourage to opt for a tissue valve. He even mentioned life times of possibly 20 years for the new anti calcification treated valves. Not long after this I had OHS and a St. Jude Biocor valve was placed. I was hoping to get 20 but at least expecting to get close to 10 years out of it. After the OHS turned out to be less bad than expected I definitely felt I hade made the right choice and was just waiting for everything to be like the old days. Well, after today's news I realize this time may never come.

I think that for the next OHS also this surgeon will push for a mechanical valve. If there is basically no choice it will make it easier for me to accept the mechanical valve but I am still not keen on it. If somebody could guarantee me 10 years on a tissue I think I would still go for that. Since Warfarin and noise are the 2 main disadvantages and nothing can be done about the Warfarin I will most likely be looking for the quietest mechanical valve around.


regards,

Jarno

Sorry to hear this, my guess if it is having problems so soon, it either is a manufacturer problem with the valve or it is too small. Hopefully it will last longer than you think it will

 

[jarno1973]

Sorry to hear this, my guess if it is having problems so soon, it either is a manufacturer problem with the valve or it is too small. Hopefully it will last longer than you think it will

Hi Lyn,

It may be small, I believe 21 mm. I don't know how the correct thickness can be determined. According to the surgeon the aorta was this size and that determines the size of the valve they put in. He mentioned that if it turns out too small they may also do an aortic root widening during the next OHS. I dont understand this, if the aorta was this size with the original valve then it should be sufficient with the replacement valve as well. Or am I missing something?


The surgeon thought more of calcification as on the echo the leaflets of the valve showed to be very thick. When the valve is open the actual distance between the leaflets seemed to be smaller than the aorta itself. But i am not convinced that calcium could be the reason. How can I produce in 6 moths what others takes year?

 

[Lynlw]

Hi Lyn,

It may be small, I believe 21 mm. I don't know how the correct thickness can be determined. According to the surgeon the aorta was this size and that determines the size of the valve they put in. He mentioned that if it turns out too small they may also do an aortic root widening during the next OHS. I dont understand this, if the aorta was this size with the original valve then it should be sufficient with the replacement valve as well. Or am I missing something?


The surgeon thought more of calcification as on the echo the leaflets of the valve showed to be very thick. When the valve is open the actual distance between the leaflets seemed to be smaller than the aorta itself. But i am not convinced that calcium could be the reason. How can I produce in 6 moths what others takes year?

Its interesting the surgeon mentioned it might be too small too and something they might do next time to give larger valve. Altho that wouldnt cause the leaflets to be thicker. Sorry I cant be more help

 

[dcc617]

(is thinking now he shouldn't have read this string 2 weeks before AVR)

I wish you all the best.

 

[newarrior]

Hi Cory,

I am afraid I am in a similar situation as yourself. I am a little bit older than you, but at 38 consider myself way too young to have lot of restrictions in life. Therefore I choose for a tissue valve which was placed during OHS 6 months ago. I thought I was doing well except for some small issues (about which I made some inquiries on the forum). However, today I visited my surgeon and had my first echo. It turns out that the valve is not performing well and it looks like already after 6 months the valve is calcified. The shock was very big and we actually did not immediately talk about a re-op but it seems pretty clear to me that it will not take long before this will have to take place. I was asked to come back in 2 months but now even feel that 2 months maybe too long if this valve has degraded so much in just 6 months.

I will continue to tell some more about my history and valve choice. I have been planning to share this earlier but it may turn out to be a long story. In my first encounter with a heart surgeon we discussed both mechanical and tissue valves. At the time I thought I was still long away from surgery and only wanted to be informed about the options. After this conversation I immediately felt that the a tissue valve would be most suitable for my active lifestyle and thought I would be able to get at least a good number of years of trouble free living out of it.

Not long after that it turned out that I actually needed the surgery. I ended up in another hospital. The hospital and the surgeon turned out to be very experienced and I decided to go with them. In my initial meetings with the surgeon we discussed both tissue valves and mechanical valves. I made clear that my preference would be a tissue valve which was not a problem according to the surgeon. When I was admitted in the hospital for catheterization a week ahead of the surgery the surgeon came by and told I would have to have a mechanical valve because at my age no surgeon would recommend to go for tissue because it would require at least another OHS in future. I tried to explain that I preferred a tissue valve but I don’t think anyone would really argue too much with a well experienced heart surgeon. I went home feeling bad as I felt pushed into taking a mechanical valve and I was afraid I would wake up with a mechanical valve regretting it. Once at home, now 4 days before my appointment for surgery, this totally freaked me out as I was mentally prepared for a tissue valve and not for a mechanical valve (including warfarin, clicking sound, etc). I decided to cancel my appointment and talk to the first surgeon (this surgeon also has a very good reputation and is considered one of the best in Thailand) before making a decision. This surgeon understood my concerns and did not discourage to opt for a tissue valve. He even mentioned life times of possibly 20 years for the new anti calcification treated valves. Not long after this I had OHS and a St. Jude Biocor valve was placed. I was hoping to get 20 but at least expecting to get close to 10 years out of it. After the OHS turned out to be less bad than expected I definitely felt I hade made the right choice and was just waiting for everything to be like the old days. Well, after today's news I realize this time may never come.

I think that for the next OHS also this surgeon will push for a mechanical valve. If there is basically no choice it will make it easier for me to accept the mechanical valve but I am still not keen on it. If somebody could guarantee me 10 years on a tissue I think I would still go for that. Since Warfarin and noise are the 2 main disadvantages and nothing can be done about the Warfarin I will most likely be looking for the quietest mechanical valve around.


regards,

Jarno

Did you go mechanical ? How is the ticking? Warfarin ???

 

[newarrior]

Did you go mechanical ? How is the ticking? Warfarin ???

Bro you did AVR in Thailand ? Cost ? Post op care ? Results ?

 

[dick0236]

Bro you did AVR in Thailand ? Cost ? Post op care ? Results ?

Newarrior, you should check the posting date (in the upper left corner of the post). Many of the posts you are asking for a response are very old. You may, or may not, get a response.