Strugglng with my decision

[LouLou]

Shellbell - I will be right behind you with surgery scheduled for October 10th. Since I already have a mechanical mitral valve from a previous surgery, the valve choice is a non-issue. I believe it is a personal decision that you will be able to make after some research. I have been on Coumadin for 25 years with just some minor issues. I have a home monitor so I only go to the lab every 3 or 4 months.
It is a lot to process when you hear the Surgery word. I just got my surgery date this week and am still processing it.
I will be sending thoughts and prayers your way! You will be fine.
Tammy

 

[njean]

Hello and welcome, Shellbell! Glad that you found us!

I hope that by reading our posts of our experiences with OHS, Coumadin, mechanical vs. tissue valves, etc., you can arrive at a decision that is right for you; that you feel comfortable with. As others have said, valve choice is a personal decision and it does not necessarily guarantee that you will never need another OHS! But if you are basing your decision solely because you fear or do not want to be on Coumadin the rest of your life, put those fears aside.

I had my first OHS in 1975 when valve replacement surgery was still in it's infancy. I was not asked whether I preferred mechanical or tissue....the surgeon simply implanted two mechanical valves (aortic and mitral) because he felt that was the best choice for me. I was 24 years of age then....I'm 62 now and have been on Coumadin for 38 years and haven't bled to death yet. And may I add, I've had a total of three OHS, not because the valves went bad but because of other issues, such as scar tissue formation in and around the valve. I've also had 5 other major surgeries and the Coumadin has been managed quite adequately with very little complications. "I think I have one more life left!"

So don't let the idea that if you have to be on Coumadin all the joys of your life will have to come to an abrupt end? Believe me, that's not the case! I think Ski Girl nailed it on the head on her post!

Good luck and I hope you find Peace with whatever decision you make.

Godspeed!

 

[neil]

looks like your doing your homework, go with the one you think is best for you,i choose tissue as didnt want to be on anti coag for the rest of my life, others choose mech as there dont fancy a re op, also listen to what the cardio and surgeon say, there after all are the experts,

 

[Fundy]

In Canada. you do have a lot of choices, even if your not aware of them. You can choose your valve, surgeon, cardiologist; even the province the surgery is done in if you desired. But the surgeon doesn't have to agree to be your surgeon or agree to use the valve you want. The Mosaic was a tissue choice I wanted to avoid, its a great valve on paper but seems to have a lot of installation errors from what I gather.

If you want another valve that wasn't suggested by surgeon mention it as soon as possible as you may need to get a different surgeon as its quite possible they have little or no experience with that valve you want.

 

[T in YVR]

Fundy is right - you have all the choice you want in Canada. I'm going to have mine done at St. Paul's Hospital in Vancouver in October. I have picked my hospital, my surgeon, my valve (On-x) - and to some extent I'll be picking my date (or at least the timeframe) because I am mostly asymptomatic. In the words of my surgeon, "you can almost pick your date"...and if you want a 2nd opinion get that too. I did alot of research on coumadin and am relatively comfortable with my decision.

You also asked about the pain and recovery post surgery...well, I'm not there yet in terms of having my operation, so like all of us in the waiting room, I only can go by what others have said on these boards. But I'll tell you this: In my mind, I expect my surgeon to be on his game when he operates (as I am sure they always are). And the VERY LEAST I can do is ensure I am on the top of MY game when I head into this - both mentally and physically. I owe it to myself. I'm treating this surgery like my own Olympic event. I found out I would need AVR in February and like everyone, the road has had its up and downs. From the shock, sadness, disbelief, the "why me" moments to the "let's tackle this head on" and get going and get on with my life attitude. I've always stayed in pretty good shape, am very athletic, and I eat very healthy. But I kicked it up a notch shortly after this all started. I have dropped 20 lbs (I'm 6'0" and WAS 200 lbs, and am now down to 180 lbs and leaner with much less body fat (I haven't been this weight since I went to university 20+ yrs ago!). I'm working out daily (running, stationary bike, hiking, lots of aerobic activity, lots of core strengthening exercises, but I try to keep my heart rate under 140 or 150 bpm and do no heavy lifting). I even started 'juicing' etc - great for cleansing kidneys and liver and getting all your vitamins. And as much as I have a severely leaking valve and moderately enlarged left ventricle and am about to have AVR in less than 2 months, I have not felt this good in several years - crazy...(TOUCH WOOD!). I've read a couple good books on open heart surgery (part inspirational and part factual) and those - combined with the people and content on this site - have helped me immensely from a mental standpoint.

I'm sure I'll be wound up tight the day of surgery and it will be emotional when I leave my wife and 4 yr old son to go to the OR, but I'm going in with the state of mind that I will have done everything I can to ensure a successful surgery and easier recovery. At times it feels odd to want to have surgery so much, so that I can get it over with and move on! I look forward to the day when AVR no longer consumes me as it does right now, and it just becomes a part of my past and who I am. And I hope to be one of those people on this board who talks about how AVR was not as bad as they thought it would be.

Good luck as you head down your path,
Tony

 

[lance]

Hello in Peterborough
You're in good hands at TGH--the best.
The first concern with warfarin is management. Early on I hated it, so I learned everything about it I could, TGH manages me and I home test. Skilled management is the key to success. Warfarin hasn't changed my life style except for feeling cold, actually chilled to the bone during early days following surgery. I eat a balanced diet, including greens, etc., And never avoid food because of Vit. K content. Actually I never think about it. Vit. k is required for healthy bones, much more important. Warfarin hasn't altered my life it's something I've learned to live with.
Unlike other anti-coagulants warfarin can be reversed. Weekly testing and proper management reveals how much is present in your blood. Most problems with warfarin are the result of bad management and ignorance. Management isn't rocket science so it's perplexing how so many, even professionals, get it wrong. Learn how to use a point of care home monitor and have TGH monitor your INR's. Dr. Eric Yao heads the department managing mine.
Like yourself I walk my dogs in the woods around the farm and vacation in Algonquin Park most years enjoying the trails.
You're very lucky to have TGH taking care of you.
Nice to encounter another Ontarioan.
Sandra

 

[Shellbell]

Hi Sandra -

Also pleased to see another Ontarian. I have done some research on TGH and the Peter Munk Cardiac Centre, and my surgeon, Dr Vivek Rao, and i really couldnt be happier. I have complete confidence in him, he has excellent credentials and background and also does tons of research into aortic valve replacement technologies. He has pioneered many cardiac treatments and procedures. So happy that he isnt a worry to me at all.

I have made a choice, and its a tissue valve. For many reasons. One is the lack of knowedge about warfarin therapy you described above. I freeze now, one of those cold habds cold feet people, i would be forever shivering. I am just not ready to take warfarin on board right now, and i'm happy with my choice. My surgeon tells me we should be able to replace the valve with a TAV procedure next time, one of those valve in a valve ones.

 

[Erik Sichra]

My dear friends,

I am glad, as Shellbell, to have found such a website, where I can discuss and share my fears and thoughts regarding my AVR selection. Briefly, my name ist Erik Sichra, 27 years old, living in Vienna, Austria. I was diagnosed with a bicuspid aorta, both with stenosis and regurgitation. The results of the last ecocardiogram went like this: 95mmHg gradient (with a peak of 148mmHg) and a AV-V velocity of 6,1 m/s. When the doctors saw these results, they could not believe I had not been operated before (I just pray God to let me stay healthy until the time of my operation). Therefore, and although I don`t have much difficulties in my life besides almost fainting a couple of times because of doing competitive sports, I have decided to undergo AVR surgery (although I have to recognize that sometimes I wonder if undergoing an operation now would be ok, since I feel ok!). In a couple of days, I am going to inform my decision to the doctors and from then on, just wait for the date of the operation.

In this regard, at this time I am struggling with my decision. However, I know for sure that it will be between a mechanical valve and the Ross procedure, since with a biological one, with my age, would undergo surgery for sure in the next 10 years (I guess). As most of you have already said, it is a very personal decision, and whatever this may be, is far better than not doing nothing. Nonetheless, I am trying to decide myself which option would be the best one for me. The mechanic valve offers me the chance to not undergo operation (if all goes well, of course), but would have to take anticoagulants for the rest of my live. With the Ross procedure, if performed well, is the best possible one, and you don`t need anticoagulants, but there is a chance to be reoperated.

I hope you can share your thoughts on: "What surgery would you undergo, if you were me, and why"? I know that there is no sense to keep stretching my decision because I will always get different opinions, but I think I still need some more feedback to be 100 % sure that I take the right decsion.

Thanks a lot to you all! And it is quite encouraging to know that this type of forums exist, where people as us can have a free space to share their fears and thoughts!

Best regards,

Erik

 

[pellicle]

Hi

I was diagnosed at 5 or so, had a 'reconstruction / repair' done at about 10 years old, then a 'homograft' done at 28 and then (in 2011) a mechanical ATS valve.

I hope you can share your thoughts on: "What surgery would you undergo, if you were me, and why"?

ok ... as according to your request:

I would have a mechanical but I would ask the surgeons what is the possiblity for having an aneurysm in the future. The mechanical valves will last your life, but there may be additional reasons for surgery again such as aneurysm (more common in bicuspid valve patients I understood) and stuff like 'panus' in-growth.

One operation is much better than many. Please examine my thread here.

The reasons are to minimize surgery (and each surgery brings risks and compounding complications from scar tissue and a number of other issues), the issues of warfarin are not as significant as many drum them up to be and management is not difficult when you self test (as can be done more easily outside of the USA).

Had I had a mechanical valve done in 1992 I would not be considering if they will cut out my sternum as the method for treating the infection which I still seem to have ...

The Ross procedure was recently discussed here. The people who discussed it (who had had it done) seemed to be ok with the fact that they did not get more than 12 years out of it. Personally I got 20 years out of my homograft. The point was raised of "why cut two valves when only one needs fixing".

The Ross is a complex operation and proponents of it suggest you look for a surgeon who has done > 200 of them to ensure they know what they are doing. Personally I feel that valve replacement with a mechanical will be much more "understood" technology.

Lastly there is the sad case of a fellow here who put in a tissue prosthetic only to have it fail within a year and had to go mechanical. He was younger too. I understood that the tissue prosthetics tend to last longer in people over 50.

I know that there is no sense to keep stretching my decision because I will always get different opinions, but I think I still need some more feedback to be 100 % sure that I take the right decsion.

its hard. I'm "lucky" in that I just did what I was told and never had to agonize over it. The only thing I'd change (perhaps) is to have my homograft as a mechanical. However the mechanicals of then were not as good as the ones now ... so I'm advantaged by that technology development.

I wish you all the best in your decision. Feel free to ask me any questions about my situation if that helps you think..

 

[Protimenow]

My situation, at age 41, was not much of a choice. At that time, if I chose a tissue valve, I looked at the likelihood of replacing it every ten years or so. The mechanical was expected to last for decades. My choice - one surgery at that time, versus another every ten years or so, even if I faced taking coumadin for the rest of my life - seemed like an easy one. Today, of course, it may be a bit more difficult -- with the possibility of minimally invasive repairs of your tissue valve some time in the future, and the remote possibility that one day they will be able to trick your cells into building a NEW valve from YOUR OWN tissue, or possibly 3-D printing a new valve for you, these future options might make the choice slightly more difficult.

The issues related to anticoagulation management for the rest of your life shouldn't be that big a factor, as others have already said. Sometime in the next decade or two, there may finally be a medication that can do the clot prevention without requiring the regular testing, etc. that those of us who take warfarin currently have to do.

However - working with what is currently available, and giving some consideration to where technology seems to be heading - if I had to make the same decision today, I would probably still go with mechanical. But, again, this is up to you and your doctor and, whatever decision you make, it'll of course be the right one.

It's good to see you on this forum.

 

[dick0236]

My dear friends,

.....The results of the last ecocardiogram went like this: 95mmHg gradient (with a peak of 148mmHg) and a AV-V velocity of 6,1 m/s. When the doctors saw these results, they could not believe I had not been operated before (I just pray God to let me stay healthy until the time of my operation). Therefore, and although I don`t have much difficulties in my life besides almost fainting a couple of times because of doing competitive sports, I have decided to undergo AVR surgery (although I have to recognize that sometimes I wonder if undergoing an operation now would be ok, since I feel ok!).

Erik

Glad you are here Erik. I can understand your difficulty in making a decision when you really don't feel sick. I was where you are when a cardio dropped the bomb that I needed the surgery at 31. Although I knew I had a serious "heart murmur", I had no apparent symptoms...... but they were telling me that my risk of serious problems, or death, was very high (about one in six). My gradient across the valve was 117mm according to one of my few remaining hospital records. I put surgery off, for about 10 months, until I graduated college. My only choice, back then, was a mechanical valve and I am glad I did not have to go thru "making the correct choice". I am happy with my decision and would make the same decision if I had to do it over.

 

[-andrew-]

Re: Strugglng with my decision

Hi Erik. I was pretty much in your position just over 11 years ago and opted for the Ross. Unfortunately, it only lasted until recently when I needed surgery to correct an enlarged aortic root. However, both my aortic and pulmonary valves are apparently still performing well - well enough that they've left them in for now at least! So if it had not been for the aortic root dilating, my Ross procedure would still have been going strong. That's the reason that although i was obviously very disappointed that i needed more surgery, I don't regret my decision to have a Ross in the first place. I have also worked the valves quite hard over the last 11 years with lots of competitive sports - cycle, swim, run and triathlon races. The good news for new Ross patients is that the (quite regular) complication of an enlarged aortic root is now better understood and the aortic root is often reinforced during a Ross to prevent a later aneurysm. It's typically higher risk surgery with a higher risk of repeat operations with the primary advantage of avoiding warfarin.

So if I were you I'd read up on taking warfarin as much as possible including all the comments on this forum - many people who've been taking it for years don't see it as a big deal. If you think you could get to that position also, I'd go mechanical. If not if you can find a good surgeon with a long list of Ross patients behind them and you're happy to accept the higher surgical and re-op risks, Ross could be a good option.

Apologies if you'd read most of that before on previous posts, but there don't seem to be that many Ross patients around here so I felt like I best speak up!

Alles Gute!

 

[Mike59]

Born with heart murmur 1959
Aortic valve repair 1979
Aortic valve replacement 2012 with tissue valve

Yes repair lasted 33 years

My advice is to listen to your body, respect the advice of your cardiologist and surgeon

Really happy with my choice been advised should last 15 to 20 years so average 17 years

I know it could be shorter

But I am very very happy with my choice

Be grateful of the choices we are given of life saving and enhancing surgery

And live life to the full

 

[Erik Sichra]

One operation is much better than many. Please examine my thread here.

You are right, the less operations, the less risk you have.

The Ross procedure was recently discussed here. The people who discussed it (who had had it done) seemed to be ok with the fact that they did not get more than 12 years out of it. Personally I got 20 years out of my homograft. The point was raised of "why cut two valves when only one needs fixing".

You got 20 years out of your homograph valve, with age 28? What did you do? Sleep all day long?! Amazing!

its hard. I'm "lucky" in that I just did what I was told and never had to agonize over it. The only thing I'd change (perhaps) is to have my homograft as a mechanical. However the mechanicals of then were not as good as the ones now ... so I'm advantaged by that technology development.

I think it all sums up to this question: "Are you willing to adjust your lifestyle to a regular control of your blood`s anticoagulation levels and bleed more than usual OR be ready for a reoperation in the next 20 years (more or less)?"

I wish you all the best in your decision. Feel free to ask me any questions about my situation if that helps you think..

Thanks man! I really appreciate it! Take care!

 

[Erik Sichra]

The issues related to anticoagulation management for the rest of your life shouldn't be that big a factor, as others have already said. Sometime in the next decade or two, there may finally be a medication that can do the clot prevention without requiring the regular testing, etc. that those of us who take warfarin currently have to do.

I hope the future ahead of us will bring better technology to deal with these decisions

However - working with what is currently available, and giving some consideration to where technology seems to be heading - if I had to make the same decision today, I would probably still go with mechanical. But, again, this is up to you and your doctor and, whatever decision you make, it'll of course be the right one.

Oks, thanks. Well the 2 surgeons here in Austria I visited have told me Ross procedure without any doubt. Cardiologists are the ones who recommend me the mechanical valve. You can see that my decision is even tougher having this 2 opinion streams (if I may)

It's good to see you on this forum.

Its good to have people like you that help people make a decision as smooth as possible! Thanks!

 

[Erik Sichra]

Glad you are here Erik. I can understand your difficulty in making a decision when you really don't feel sick. I was where you are when a cardio dropped the bomb that I needed the surgery at 31. Although I knew I had a serious "heart murmur", I had no apparent symptoms...... but they were telling me that my risk of serious problems, or death, was very high (about one in six). My gradient across the valve was 117mm according to one of my few remaining hospital records.

Thanks for the words! I am glad to have you as a supporter to make the best possible decision! The doctors have told me the same as they did to you back then: that the risk of sudden death increases, and that it is far better to get operated than to wait until something happens.

My only choice, back then, was a mechanical valve and I am glad I did not have to go thru "making the correct choice". I am happy with my decision and would make the same decision if I had to do it over.

Yep, you are right, I think sometimes is better to have just 1 choice.

I wanted to ask you, by the way, for your personal experience using anticoagulants (warfarin). I am really surprised how long have your valve and your body resisted the anticoagulants. Congrats!
In your 46 years of experience with a mechanical valve, what would you say was the biggest difficulty for you? Havent you had problems with aneurysms or "pannus" in-growth? I am a bit fearful regarding the side effects of Marcoumar in my life.
For the history you have, it may seem that at my age you would have done the same procedure and not the Ross.

Thanks a lot for your cooperation!

Best!

Erik

 

[pellicle]

You got 20 years out of your homograph valve, with age 28? What did you do? Sleep all day long?! Amazing!
re!

Let's see ...
- first year after surgery I was doing the last year of my second degree, so I was a bit sedentary. I was back riding my motorbike after 12weeks though.
- started cycling every night after classes
- when I got a job I started cycling to work every day (17km)
- continued my enjoyment of hiking and backpacking
- moved to Japan and cycled similarly there (hikes there much hillier than Australia)
- moved to Korea, did the same (the great wall in china is also bloody hilly)
- moved to Finland added cross country skiing to the list ... (thanks to my wife)

Yep ... really adjusted my lifestyle to suite

I am now back in Finland again and just waiting for the snow so I can get back out there. I was hoping to get into a hunt during the year but licence issues and my not being able to bring a rifle from Australia here has been a difficulty. Next season for sure!

PS -i learned long ago that if you do not make a point of pushing your boundaries out, then the nature of things is that they shrink. Now its normal that after 40 the capacity you have for things diminishes, but you can do your best to keep that rate of loss to a minimum. The significant losses then come from the major setbacks like bad injuries and surgeries. As you get older they require more effort to recover from and have the same level of fitness again.

I do not consider warfarin as being a limitation. Look up TheGymGuy here, he also thinks this way. There are many who give up easily. So far no physical obstacle has ever seemed to big to make me change my want to live my life as I see fit. The psychological ones are the tougher ones...

 

[Erik Sichra]

Hi Erik. I was pretty much in your position just over 11 years ago and opted for the Ross.

How old were you at that time? And why did you decide the Ross procedure?

Unfortunately, it only lasted until recently when I needed surgery to correct an enlarged aortic root. However, both my aortic and pulmonary valves are apparently still performing well - well enough that they've left them in for now at least! So if it had not been for the aortic root dilating, my Ross procedure would still have been going strong. That's the reason that although i was obviously very disappointed that i needed more surgery, I don't regret my decision to have a Ross in the first place. I have also worked the valves quite hard over the last 11 years with lots of competitive sports - cycle, swim, run and triathlon races. The good news for new Ross patients is that the (quite regular) complication of an enlarged aortic root is now better understood and the aortic root is often reinforced during a Ross to prevent a later aneurysm. It's typically higher risk surgery with a higher risk of repeat operations with the primary advantage of avoiding warfarin.

So if I were you I'd read up on taking warfarin as much as possible including all the comments on this forum - many people who've been taking it for years don't see it as a big deal. If you think you could get to that position also, I'd go mechanical. If not if you can find a good surgeon with a long list of Ross patients behind them and you're happy to accept the higher surgical and re-op risks, Ross could be a good option.

Oh, its nice to hear you are doing well with your Ross procedure, although you had a slight drawback on the root of your aorta, that fortunately could be resolved. So you were happy to accept the higher surgical and re-op risks, in order to avoid taking Warfarin? Wow, you were very brave! I think that, to undergo this Ross procedure, you have to go for it!

Apologies if you'd read most of that before on previous posts, but there don't seem to be that many Ross patients around here so I felt like I best speak up!

Please, dont apologize; on the contrary, many thanks for your helpful feedback!

Alles Gute!

Danke, dir auch!

 

[Erik Sichra]

Wow, that was a long period to last for a repairment! Congrats!

Yes, as you say, I am grateful with the choices we are given of life saving!

Why didn`t you undergo a Ross procedure? or a Mechnical Valve? (If I may ask you)

Regards!

Erik

 

[Protimenow]

In my experience, doctors who specialize in one area seem to make all their decisions from within that specialty's filter. If I went to an allergist, the conclusion would have been that my murmur was some kind of allergic reaction to something. If I went to a cardiologist, the conclusion would be that I had a bileaflet valve. I hate to think what a urologist or proctologist would have said.

The reason that I'm mentioning this is to get an idea of why the cardiologists recommend one thing (mechanical valve), and the surgeons recommend something else (Ross procedure). It may be helpful to look at long term survival rates -- or, at least, at the likelihood that the Ross may eventually fail, while the long term prognosis for mechanical valves is pretty good. I suspect that if you ask surgeons who are more experienced with mechanical valve surgeries than they are with the Ross Procedure which they recommend, you may get a 'mechanical valve' suggestion (unless the surgeon wants more 'practice' doing the Ross procedure, and you're a suitable practice subject).

I'm not advising one versus the other -- it's a decision for you and your doctors to make -- but it is certainly worth considering the choice from all angles. (For most of us, warfarin isn't a big deal -- and with the availability of meters that enable us to monitor our own INRs, the risk is even lower than it was when **** or I had our valves implanted).