Valve choice for young man

[anne casey]

Has anyone man had their valve and aorta replaced when @ 19 to early 20's? What choice of valve did you choose? And how do you feel now about that decision today?

 

[pellicle]

Hi

'm a little over 50 and have had 3 aortic valve surgeries. I had my valve "repaired" (splitting the cusp that was "bicuspid" when I was about 10. Then replacing that valve with a homograft at about 28 and then a mechanical placed at about 48. I reckon there is a fair chance you'll follow a similar pattern (especially if you have a ross or a tissue valve put in at your age).

The only time I recall being involved in the choice was at 48 but the choice to go mechanical was a no brainer because a tissue would lead to a 4th operation and that would be very unfavorable.

When I was 28 it was 1992 and the situation was quite different to now. For a start I got a transplant valve recently harvested of a dead person who was sized appropriately for me. The valve was not antibiotic preserved but may have been cryo preserved briefly. Given that we cryopreserve embryo's I am comfortable that what was implanted in me was a living tissue. That valve lasted me 20 years. The team here in Australia who did that surgery were good at homografts and one could say specialised in it. I was also part of a 20 year follow up (double the normal 10 that is common) and my personal results were better than anyone else in the age group I was in at operation for both mortality (hello, still here) and requiring reoperationv (seldom included in followups).

The surgeon who did me was unwilling to put (as he put it) a "pig valve" into me and perhaps because of his interest in homografts unwilling to put in a mechanical and have me on warfarin (which I knew little about back then).

Today I am on a mechanical and if I could time travel back to then and bring me forward to here I'd tell me to get a mechanical.

Why? Well the primary reasons are that valves are much improved and the handling of warfarin is much improved. Today we have the ability to use a compact device to measure our INR and make adjustments to our warfarin dose. That was simply not possible back in 1992. As trivial as that sounds its as important as a wheel bearing on a car as the INR is the axle that everything else rotates around in many ways.

Good outcomes on warfarin are linked to good management of INR, so just as diabetics do better with more accurate monitoring of their blood sugar and regulate their own insulin dose us valvers on warfarin can get similar good outcomes by doing that.

Additionally this means you are not tied to a patch on the ground where blood tests are made, and can travel as you wish. I for instance am living in Australia, but since my surgery have returned to Finland and done travelling around Europe and Ireland. I'm intending to go back and perhaps spend a month backpacking around Ireland next year.

People who just don't know anything (meaning they have not lived on warfarin so just don't know) will tell you that being on warfarin will do this and that and something else. Yet on this board you'll find many people on warfarin who say that self testing means its just a minor thing. You eat what you like and you do what you like (at least I do).

Some readings from my blog: here (about my views on valve choice) and here (about INR management)

Best Wishes

 

[cldlhd]

Hi

'm a little over 50 and have had 3 aortic valve surgeries. I had my valve "repaired" (splitting the cusp that was "bicuspid" when I was about 10. Then replacing that valve with a homograft at about 28 and then a mechanical placed at about 48. I reckon there is a fair chance you'll follow a similar pattern (especially if you have a ross or a tissue valve put in at your age).

The only time I recall being involved in the choice was at 48 but the choice to go mechanical was a no brainer because a tissue would lead to a 4th operation and that would be very unfavorable.

When I was 28 it was 1992 and the situation was quite different to now. For a start I got a transplant valve recently harvested of a dead person who was sized appropriately for me. The valve was not antibiotic preserved but may have been cryo preserved briefly. Given that we cryopreserve embryo's I am comfortable that what was implanted in me was a living tissue. That valve lasted me 20 years. The team here in Australia who did that surgery were good at homografts and one could say specialised in it. I was also part of a 20 year follow up (double the normal 10 that is common) and my personal results were better than anyone else in the age group I was in at operation for both mortality (hello, still here) and requiring reoperationv (seldom included in followups).

The surgeon who did me was unwilling to put (as he put it) a "pig valve" into me and perhaps because of his interest in homografts unwilling to put in a mechanical and have me on warfarin (which I knew little about back then).

Today I am on a mechanical and if I could time travel back to then and bring me forward to here I'd tell me to get a mechanical.

Why? Well the primary reasons are that valves are much improved and the handling of warfarin is much improved. Today we have the ability to use a compact device to measure our INR and make adjustments to our warfarin dose. That was simply not possible back in 1992. As trivial as that sounds its as important as a wheel bearing on a car as the INR is the axle that everything else rotates around in many ways.

Good outcomes on warfarin are linked to good management of INR, so just as diabetics do better with more accurate monitoring of their blood sugar and regulate their own insulin dose us valvers on warfarin can get similar good outcomes by doing that.

Additionally this means you are not tied to a patch on the ground where blood tests are made, and can travel as you wish. I for instance am living in Australia, but since my surgery have returned to Finland and done travelling around Europe and Ireland. I'm intending to go back and perhaps spend a month backpacking around Ireland next year.

People who just don't know anything (meaning they have not lived on warfarin so just don't know) will tell you that being on warfarin will do this and that and something else. Yet on this board you'll find many people on warfarin who say that self testing means its just a minor thing. You eat what you like and you do what you like (at least I do).

Some readings from my blog: here (about my views on valve choice) and here (about INR management)

Best Wishes

So the repair was to try to make the bicuspid into a trileaflet valve? I always thought that a repair consisted of fixing a leak or repairing/ modifying a cusp but I never knew they tried to separate two joined leaflets. Wouldn't have been an option for me anyway as I only had 2 leaflets of basically equal size with no raphe or sign of 2 cusps joined.

 

[epstns]

Anne, I didn't have my valve replaced until I was in my 60's, but I can tell you that most surgeons today will recommend a mechanical prosthetic valve for a young male patient in his 20's unless they feel that he is a good candidate for the Ross Procedure, in which they move his native pulmonary valve to the aortic position and implant a prosthetic pulmonary valve. Some of the surgeons feel that a tissue valve implanted as a pulmonary valve will last a long time. I do not know about this at all, not having researched it myself.

Barring the Ross Procedure, most surgeons will recommend a mechanical valve because there are no currently-available tissue valves that claim to be able to last the rest of the patient's life (or even most of it) for a patient in his 20's. The mechanical valves have demonstrated the ability to last this long. Thus the recommendation for mechanical, to minimize the likelihood of needing a repeat replacement.

It might be worthwhile to look into the On-X mechanical valve. The manufacturer of this valve has been doing testing to see if a reduced regimen of anti-coagulation therapy is appropriate with their valve. If this proves to be viable, at least your son could gain the benefits of a mechanical valve (may not need another replacement) with less of the issues sometimes seen with traditional levels of anticoagulation therapy.

Don't under-estimate your son's ability to deal with this. Those younger patients heal so much faster than us old codgers, and they seem to just get back into life after it is all done.

 

[pellicle]

Hi

So the repair was to try to make the bicuspid into a trileaflet valve?

yes, as it was explained to me, during embryology stages the valve is made the same way, its just the the "edge perforations" *(think perforated cardboard designed to tear when pressure is applied) didn't tear at the time circulation pushed on it. Over time the pressures on the valve strech the valve, distort it shape (squeezing it flatter) and thus further restrict blood flow. I was under the impression that in children and young adults that is now done as a valvular angioplasty but I could be mixed up.

Mine was first identified (by ear) as a murmur when I was about 5 and I had been having yearly examinations at the specialist hospital till they did the job. I had an earlier "catheter" a few months before the operation (most likely now called an angiogram) which went in through my armpit (right arm) and one after the OHS (in through the inside elbow). Back then (mid 70's) that was all ground breaking stuff.

I always thought that a repair consisted of fixing a leak or repairing/ modifying a cusp but I never knew they tried to separate two joined leaflets. Wouldn't have been an option for me anyway as I only had 2 leaflets of basically equal size with no raphe or sign of 2 cusps joined.

that's interesting, I wonder if that deformed over the decades or if the anatomy of your situation was different? I've been told before that cardiac anatomy varies in details between people (makes sense really, as so many other things do). I've been told for instance that on my arch I have two arteriers not three going up and one branches into two later ... and that this is not "uncommon".

 

[cldlhd]

Hi


yes, as it was explained to me, during embryology stages the valve is made the same way, its just the the "edge perforations" *(think perforated cardboard designed to tear when pressure is applied) didn't tear at the time circulation pushed on it. Over time the pressures on the valve strech the valve, distort it shape (squeezing it flatter) and thus further restrict blood flow. I was under the impression that in children and young adults that is now done as a valvular angioplasty but I could be mixed up.

Mine was first identified (by ear) as a murmur when I was about 5 and I had been having yearly examinations at the specialist hospital till they did the job. I had an earlier "catheter" a few months before the operation (most likely now called an angiogram) which went in through my armpit (right arm) and one after the OHS (in through the inside elbow). Back then (mid 70's) that was all ground breaking stuff.



that's interesting, I wonder if that deformed over the decades or if the anatomy of your situation was different? I've been told before that cardiac anatomy varies in details between people (makes sense really, as so many other things do). I've been told for instance that on my arch I have two arteriers not three going up and one branches into two later ... and that this is not "uncommon".

I'm assuming,but what do I know, that the valve and aorta up to the arch in BAV are stretchier which may explain why the leaflets don't separate. My surgeon said my valve wasn't even trying to be a trileaflet and that it's 2 equal size leaflets ,kind of like a bileaflet mechanical valve I imagine. Its classified as a sievers 0.

 

[big_L]

Well, our senior statesman will need to weigh in on this. I'm sure he'll post soon. As others have already pointed out, a tissue valve is going to last a finite time. The time is lessened by the patients activity level. I'd be very hesitant to agree to one at 20. I didn't want one at 54. I'm hoping for "one and done", meaning one surgery and a valve that lasts for life. The warfarin isn't that bad, but yes it does require some management. Do some research, get your son involved, you'll know what the right choice is.

Good Luck.

 

[dick0236]

Has anyone man had their valve and aorta replaced when @ 19 to early 20's? What choice of valve did you choose? And how do you feel now about that decision today?

Hi Anne. You have been on the forum for several years and have read all of the "war stories" regarding the "mechanical vs tissue" discussions. From your "bio" your mother has also gone thru OHS for replacement of a BAV valve at 80(?) and had poor results from a tissue valve. At the current state of the science, a mechanical valve seems to give your son the best hope for a long life without additional surgery. You've read my posts and know I have had my mechanical valve a long time.......without regret and would opt for a mechanical if I where young again. At age 19 your son is looking at several OHSs with a "tissue valve" and, maybe, only one with a "meachanical valve". My "lay person" thought is have a mechanical valve at the young age(19) and if some "fantastic breakthru" does occur in the future, have the mechanical valve replaced then.

The need for warfarin will take some educating of your son since most young men think they a bullet proof......and, who knows, medical science may be on the verge of a workable anti-coagulant drug to replace warfarin.

 

[HiMyNameIsDale]

Hello Anne. I hade my valve surgery back in 2012 And I was 23. The surgeon wanted to repair my bicuspid aortic valve and I wanted a mechanical valve. I let the surgeon try to repair it because he felt confident that it would work. It failed a couple of days after the surgery and they put in a mechanical on-x valve. My case is not going to be the same as everyone else, but I agree with other posts that state a mechanical valve gives someone the best opportunity to have the least open heart surgeries over their life time if they are young. Younger people tend to get higher rates of calcification on tissue replacement valves or failure due to being overworked from physical activity. Besides, warfarin is a lot easier to deal with than potential multiple open heart surgeries, especially with the advances in monitoring devices. I feel great about my choice for a mechanical valve and it seems like it will probably keep ticking along for the rest of my life. I also second the opinion of dick0236 in that the mechanical valve will at least hold you over with minimal issues until something better comes along.

 

[neil]

Hi. At your age would edge towards mech . good luck and am sure you will be just fine

 

[Heart Of The Sunrise]

I have a friend who got a St. Jude Mechanical when he was 18. That was in 1980.
He is happy with his choice.

I just passed 2 years with my ON-X valve.
I home test with a CoagucheckXS. meter.
Coumadin has not been a problem.
I am consistently in range 2.0 to 2.5.

 

[W. Carter]

Mechanical for sure. On-X, whether it is maketing or not, only time will tell has a new lower INR range. Now that being said, with root and vein graft the INR might need to be higher depending on what kind of a threat you may be for clotting. Only your surgeon and cardiologists can tell you that. Good luck on your decision!

 

[jumpy]

I've been looking at the Ross and this is so far the best overview I've read;

Pulmonary autograft (Ross procedure) — The Ross procedure is an alternative to valve replacement with a mechanical valve or bioprosthesis. It involve replacing the aortic valve with a pulmonary valve autograft and right-sided reconstruction with an aortic or pulmonary homograft [40,41]. Use of the Ross procedure has been limited because of its technical complexity, complications with both the aortic autograft and the pulmonic homograft, and the availability of simpler and effective alternatives, ie, mechanical valves and bioprostheses including stentless bioprosthetic valves.

There are a number of potential advantages of the Ross procedure [41,42]:

Autologous tissue with documented long-term viability
Optimal hemodynamic data
Regeneration capacity
Possible resistance to infection (eg, 0.2 to 0.3 percent/patient year [43,44] as compared to >0.4 percent/patient year for recipients of prosthetic valves) (see "Epidemiology, clinical manifestations, and diagnosis of prosthetic valve endocarditis").
Lack of valve noise
Freedom from anticoagulation due to rates of thromboembolic complications ranging from 0 to up to 1.2 percent per year
Strong relative contraindications to the Ross procedure include the following [42]:

Advanced three vessel coronary disease
Other extensive valve pathology requiring replacement
Severely depressed left ventricular function
Multisystem organ failure
Pulmonary valve pathology
Marfan syndrome or other connective tissue disorders
Size mismatch between the pulmonic and aortic annulus
The Ross procedure has been used most successfully in children and adolescents, but has also been performed in adults less than 50 years of age with single valve pathology, mechanical or bioprosthetic valve failure, endocarditis limited to the aortic root, and athletes or young patients in whom anticoagulation is contraindicated and for whom optimal hemodynamics are desired (eg, a female of reproductive age). (See "Pregnancy in women with a bicuspid aortic valve".)

The pulmonary autograft in the aortic position provides excellent hemodynamics at rest and with maximum exercise; however, there may be a moderately high gradient across the homograft in the pulmonary valve position [45].

A number of studies have noted good short term results with the Ross procedure [46-51]. In a meta-analysis of 39 reports published from 2000 to 2008, the pooled early mortality rates for consecutive adult and pediatric series, adult series and pediatric series were 3.0, 3.2 and 4.2 percent, respectively [51]. However early mortality rates varied from 0.3 to 6.8 percent even among these selected centers.

Selected older patients may do well with this approach, at least in the short to intermediate term. The experience with the Ross procedure was reviewed in a series of 27 patients more than 60 years of age [49]. After a mean follow-up of 28 months, there was no mortality and only one patient required autograft replacement. When compared to 84 younger patients (mean age 44) who underwent the Ross procedure, there were no differences in hemodynamic variables for either autografts or homografts except for a slightly higher pressure gradient across the pulmonary homograft in the older patients.

Good intermediate to long term results have been reported in various pediatric and adult series. In a meta-analysis of 39 reports with one to 8.7 year follow-up, the pooled late mortality rates for consecutive adult and pediatric series, adult series and pediatric series were 0.48, 0.64 and 0.62 percent per year, respectively [51]. In adult series, the autograft deterioration rate was 0.78 percent per year and the right ventricular outflow conduit deterioration rate was 0.55 percent per year.

Longer term results suggest a high risk of reoperation [43,44,48]:

At 20 years after operation in the pioneering series of 131 patients (age 11 to 52), survival was 61 percent, freedom from autograft reoperation was 75 percent, and freedom from pulmonary homograft reoperation was 80 percent [48]. The mortality rate increased age.
At 16 years after operation in a series of 487 patients (age 2 days to 62 years), actuarial survival was 82 percent, freedom from autograft failure (reoperation and valve-related death) was 74 percent, and freedom from pulmonary allograft reoperation was 80 percent [44]. Actuarial freed om from valve-related morbidity (includes autograft and pulmonary allograft failure, endocarditis, and valve-related death) was 63 percent at 16 years.
Current use — Use of the Ross procedure in adults is controversial and the procedure is only performed at a few experienced centers. There may be more perioperative complications since the surgery is longer and more complicated than simple aortic valve replacement. Dilation of the pulmonic autograft with autograft failure is a significant late complication [43,44,48,52] associated with surgical technique in some series [53] but not others [44,50]. Since patients with preoperative aortic regurgitation and dilated aortic annulus are at risk for future dilation and failure of the pulmonary autograft [44], some recommend avoidance of the Ross procedure in such patients [54]. The pulmonary homograft is also prone to stenosis, sometimes early after surgery [55].

Even at experienced centers, use of this procedure has waned since the 1990s. Reasons include the postoperative prevalence of annular dilatation with aortic regurgitation, the long-term reoperation rate of 20 percent or more, and the availability of alternative stentless valve root conduit options.