Valve Choice for 33 Year Old: Mechanical VS HomoGraft vs Ross?

[pellicle]

Hi again Tommyboy

thank you so much for your help and sharing your experience....I am really impressed that one can still do all of these great things when on coumadin/warfarin and

glad I can help

its true (just ask Skigirl or GymGuy or even **** ... )

Can I just ask about a couple of things that you mentioned:

1) Only one of the surgeons mentioned Homografts to me. But they seem like a really good idea, i.e it seems to last longer in young adults than tissue valves, but they seems to have gone out of fashion. Does anyone have any idea why that happened maybe other than scarcity?

well I don't have any clear ideas, but issues like donor age and appropriate sizing (finding a donor with the right diameter for your needs) will make it harder. I recall waiting for something like 3 months before I got the call of "you're coming in now".

2)Are the machines that you mentioned for INR managment really so reliable?
[I.e. I reckon that even if you are off by .3 and the machine says 2, when it is 1.7 could be risky?]

They are really good, and IMO the current generation machines work even better than the earlier ones. For instance I use a Coaguchek XS which has a different method of operation to measure the coagulation than the older Coaguchek S does.

I recently posted this thread here on this forum about a proper comparison between a commercial coagumeter and the Coaguchek XS. I suggest you read that, and you can see that the results are good compared even to labs.

3)I am really interested in academic material on these issues. I.e. are there any studies that show that self-management leads to risks that are three times lower as you say?

Tons

I suggest that you consider starting with a cup of tea and going through this presentation at the May, while about valve selection he makes some references to coagulation studies and how that effects the stats.

http://mayo.img.entriq.net/htm/MayoPlayer1.html?articleID=4071

also, keep in mind that most of the data collected about warfarin (aka Marevan / Coumadin) is from people who are in very different demographic groups. They do not distinguish data between elderly and infirm VS young and healthy. The reality is however that the vast majority of people on warfarin are already ill and or elderly ... the vast majority are not on it for aortic valves.


A quote from the Mayo presentation from the meta-analysis review done by the Mayo

another study showing TIR for UC vs PSM showed
PSM was in range 78% and total related events dropped from 4.7% (UC) to 2.9% (PSM)

It showed also that PST reduced the bleed complications from 11% to 4.5% and Thromboembolic from 3.6% to 0.9%
UC = Usual Care
PSM = Patient Self Monitoring
PST = Patient Selft Testing

Then some direct references:

http://www.thelancet.com/journals/l...6(06)68139-7/abstract?version=printerFriendly
Self-monitoring of oral anticoagulation: a systematic review and meta-analysis

We identified 14 randomised trials of self-monitoring:
pooled estimates showed significant reductions in thromboembolic events (odds ratio 0·45, 95% CI 0·30—0·68),
all-cause mortality (0·61, 0·38—0·98),
and major haemorrhage (0·65, 0·42—0·99).
...
Trials of combined self-monitoring and self-adjusted therapy showed significant
reductions in thromboembolic events (0·27, 0·12—0·59) and death (0·37, 0·16—0·85),
but not major haemorrhage (0·93, 0·42—2·05).
...
11 trials reported improvements in the mean proportion of INR in range.

time in theraptuic INR range is a key issue to avoiding negative outcomes. By self managing, my INR was 98% in range in the last 2 years.

next
http://web.clas.ufl.edu/users/msscha/mtmcc/meta_analysis_coumarin_selfmgt.pdf
Self-management of oral anticoagulant therapy: A systematic review and meta-analysis

Ten trials with a total of 2724 patients were included.
Two of the trials could be classified as high quality trials.
.. self-management was associated with a reduced risk of
death (relative risk (RR)=0.48, 95% confidence interval (CI) 0.29-0.79, p=0.004),
major complications (RR=0.58, 95% CI 0.42-0.81, p=0.001)
and with increasing time within therapeutic INR target range
(weighted mean difference=6.53, 95% CI 2.24-10.82, p=0.003).

then

http://www.aafp.org/afp/2011/0801/p266.html
Self-Monitoring and Self-Management of Anticoagulation Therapy

We identified 18 randomized trials (4,723 participants).
Pooled estimates showed significant reductions in
thromboembolic events (RR = 0.50; 95% confidence interval [CI], 0.36 to 0.69)
and all-cause mortality (RR = 0.64; 95% CI, 0.46 to 0.89).


Trials of self-management showed significant reductions in
thromboembolic events (RR = 0.47; 95% CI, 0.31 to 0.70)
and all-cause mortality (RR = 0.55; 95% CI, 0.36 to 0.84);


Trials of self-management alone showed significant reductions in thromboembolic events
(RR = 0.47; 95% CI, 0.31 to 0.70)
and all-cause mortality (RR = 0.55; 95% CI, 0.36 to 0.84);
self-monitoring did not (thrombotic events RR = 0.57; 95% CI, 0.32 to 1.00; mortality RR = 0.84; 95% CI, 0.50 to 1.41).

Self-monitoring significantly reduced major hemorrhages (RR = 0.56; 95% CI, 0.35 to 0.91)
whereas self-management did not (RR = 1.12; 95% CI, 0.78 to 1.61).

Twelve trials reported improvements in the percentage of mean INR measurements in the therapeutic range.

Its interesting to read the notes from the Author in the above review

Authors' Conclusions: Compared with standard monitoring, patients who self-monitor or self-manage can improve the quality of their oral anticoagulation therapy. The number of thromboembolic events and mortality were decreased without increases in harms.

and in particular about why people may not self monitor or self manage

However, self-monitoring or self-management was not feasible for up to one-half of the patients requiring anticoagulant therapy. Reasons included patient refusal, exclusion by their general practitioner, and inability to complete training.

Yet it is the General Practitioner who often gives the worst results: This study compares a specialist AntiCoagulation clinic to GP Medicare management:
http://www.ncbi.nlm.nih.gov/pubmed/9701098

lower-range anticoagulation had fewer international normalized ratios greater than 5.0 (7.0% vs 14.7%), spent more time in range (40.0% vs 37.0%), and spent less time at an INR greater than 5 (3.5% vs 9.8%).

btw ... INR > 5 is a significantly high risk for a brain bleed if fell over for instance.

... had more INR within range (50.4% vs 35.0%), had fewer INR less than 2.0 (13.0% vs 23.8%), and spent more time within range (64.0% vs 51.0%).

and so as you'd expect

... had lower rates (expressed as percentage per patient-year) of significant bleeding (8.1% vs 35.0%), major to fatal bleeding (1.6% vs 3.9%), and thromboembolic events (3.3% vs 11.8%); ... a lower mortality rate (0% vs 2.9%; P= .09). Significantly lower annual rates of warfarin sodium-related hospitalizations (5% vs 19%) and emergency department visits (6% vs 22%)

... reduced annual health care costs by $132,086 per 100 patients. Additionally, a lower rate of warfarin-unrelated emergency department visits (46.8% vs 168.0%) produced an additional annual savings in health care costs of $29 72 per 100 patients.

No wonder GP's think Warfarin is bad, look at their results!
( ... and no wonder I want to manage myself!)

There are studies revealing that self management and self measuring can further improve the results over a specialist AC clinic in the hands of patients who are trained and rigorous.

sorry for such a long answer, but your questions seemed to indicate you wanted details.

 

[tommyboy14]

Hi Pellicle,

that is all incredibly helpful material. The fact that self-management helps so much is very encouraging indeed.

I will read all of this carefully and watch that video.
Thanks a lot

tommy boy

 

[tommyboy14]

Hi Peter,

Thank you for sharing your experience.
Could you please let me know in what your thought process was in choosing the Ross over an mechanical valve?

You were not concernend about the potential risk for re-operation?

Were you told that Ross could be a life-long solution?
or that there might be potential for reoperation?

Any insight would be really appreciated.

To be frank, I was also really inclined towards Ross at the beginning, because it seems the best of both worlds, i.e. durability without the need for coumadin.
But then again theere is the risk for reoperation right? [which might be very complex following Ross?]

Thanks

Tommyboy

Hi Tommy,

I had my surgery a year ago and opted for the Ross Procedure. I seemed to do an endless amount of diligence and it was the best option for me. If you're interested in going that route, I would strongly recommend that you find a surgeon with significant Ross experience. As you noted, it is a complex surgery and what I learned is that not all great surgeons are necessarily great Ross surgeons. I was RP #532 for my surgeon in the US and he has done more than anyone in the US but I believe he mentioned there were two surgeons in Germany who had done more than him so it's still a relatively miniscule amount of procedures compared to valve procedures as a whole.

I ended up doing a little marketing piece with my surgeon not too long after my surgery which cites some of the advantages for younger patients if you're interested - http://www.youtube.com/watch?v=YUXt7h0a5z4

 

[Owen]

Hi tommyboy...

Just thought I'd add another voice to the mix, hopefully helpfull...

I had my surgery a year ago, mechanical valve. After the first couple months of adjusting the meds and finding the sweet spot with the dose, it's been so easy I almost forget to test. I chose the mechanical mainly for the longevity, and have found the warfarin therapy not any problem. No adverse effects, pretty much back to normal life.
I'm afraid I can't say much about the Ross option, that was not presented to me. But if you do go with mechanical, based on my experience the good outweighs the bad.

 

[R1Phrankey]

Hi Tommyboy,

Interesting topic. I am also diagnosed with aortic valve stenosis, and I am also having a very active life. I have the same questions as you, but will open my own topic.
This topic contains some links to very interesting articles to read.

regards,
Frank

 

[Jamey T]

I found out about my defective aortic valve when I was 25, so I started taking care of myself and eating better starting then. I wanted to go into surgery in good shape to help with recovery. When my cardiologist told me two and a half years ago that it was time, I went in in good shape. I never had any symptom at all, my cardiologist said my body had adapted very well. I chose a mechanical valve because I never wanted to go through the surgery again. The warfarin and the testing aren't even a blip in my life. I mountain bike, downhill ski, rock climb, hike, kayak, hunt, fish, etc. and I still do those things. I bruise slightly easier now, but I never did bruise easily. They do get bigger though. Then again, I am 50 now, and that might have started without the ACT. I am not one to play it safe in activities either, I have a hard time with moderation!
Seriously, the only change in my life is the ticking when I am going to sleep. That is the only time I even hear it.

Good luck with your surgery.

 

[TheGymGuy]

Jamey, this is a very encouraging post. tommyboy14, how is it going?

 

[spartangator]

Welcome, Tommy. Obviously, you're receiving lots of wonderful advice, and I don't have anything to add beyond what others have helpfully offered except to say it's great you're learning so much about your situation/solutions and that there are a number of us who went through this about your age, and we're happy to help.

--bl

 

[Patsman07]

Hi Tommy,

I had my surgery a year ago and opted for the Ross Procedure. I seemed to do an endless amount of diligence and it was the best option for me. If you're interested in going that route, I would strongly recommend that you find a surgeon with significant Ross experience. As you noted, it is a complex surgery and what I learned is that not all great surgeons are necessarily great Ross surgeons. I was RP #532 for my surgeon in the US and he has done more than anyone in the US but I believe he mentioned there were two surgeons in Germany who had done more than him so it's still a relatively miniscule amount of procedures compared to valve procedures as a whole.

I ended up doing a little marketing piece with my surgeon not too long after my surgery which cites some of the advantages for younger patients if you're interested - http://www.youtube.com/watch?v=YUXt7h0a5z4

Hi all,

Im in a very similar position to the OP. Im 29 and about to meet my surgeon in a few weeks for the first time. Im seriously considering the Ross and have been trawling through the forums here, they have been very informative and a great source of comfort for me. HOWEVER if I was to get the Ross done and it worked and in twenty years time I was completely fine and had a "healthy heart" the chances are that I would never visit this site. I would have forgotten about my former heart problems to some degree. My point is that there is, understandably, a bias on this site towards people who had the Ross and it didn't last as long as one might hope. Tissue valves have a problem with longevity and I believe that warfarin related issues would keep me coming back to this site if I was to have a mechanical valve installed. I wish we could have someone who had the Ross 30plus years ago on here!

 

[pellicle]

Hi

Im seriously considering the Ross and have been trawling through the forums here,

you are probably more widely read than me on this topic (as my interest is purely academic).

Have you read this paper from 2011?

HOWEVER if I was to get the Ross done and it worked and in twenty years time I was completely fine and had a "healthy heart" the chances are that I would never visit this site.

I expect the same could be said for those who have good outcomes from mechanical or tissue valves too ...

My point is that there is, understandably, a bias on this site towards people who had the Ross and it didn't last as long as one might hope.

I suspect such biases exist for many and even then this site should not be used for any sort of stats gathering because I am sure we represent but a tiny portion of those who have valve surgery. Perhaps we are all a kind of "vocal minority"

This article suggests:

At 20 years the freedom from reoperation on the pulmonary autograft was 81.8% and on the pulmonary homograft was 92.7%, and in both was 79.9%

espeically given:

Patients' mean age was 34 ± 9 years; 66% were men and 82% had congenital aortic valve disease. The median follow-up was 13.8 years. Patients who had reoperations continued to be followed and entered into the survival analysis.

so you could do well there, although there is some 'ambiguity' to me in the median followup being 13.8 years and the ability to draw conclusions about 20 years across many in the study.

Still ... its worthwhile stuff to read.

 

[Superman]

23 1/2 year veteran mechanical valver. Replaced once 4 1/2 years ago due to an aortic aneurysm - so no guarantee of being free from re-op. But I stuck with mechanical. I was just shy of 18 for my first surgery (I turned 18 while recovering in the hospital) and was not presented any option other than mechanical at that time (back in 1990).

The only thing I'll add is that there is a certain amount of self management needed regardless of who you see for your warfarin monitoring. I've found that bad advice abounds and when you're dealing with people who don't take the med themselves or primarily deal with elderly patients taking it for Afib - well, their guidance is lacking. Additionally, with some of us, odds are the people at the lab have been managing Warfarin dosing for a lot less time than we have.

We all metabolize medications differently and after a while you really come to understand how dosing changes will impact your INR for you. The lab is going off a chart. I was on a yo-yo of INR times and dosing options in the early years until I really took control of my own management. I also didn't have access to the interwebs - I was the only person I knew taking the med for years. Especially considering my age at the time. I've since learned to tell them what I believe drove my INR change from the previous test, and the dosing change I feel is most appropriate (many times no change at all). Sometimes we butt heads, sometimes they don't have my current dose correctly documented - but I consistently test in range - and that's what is most important for me.

I should add - that while all this might sound scary or difficult, it really does become second nature and it's not anything I spend any time thinking about or stressing over any more. Right now I'm more concerned with getting to all my kids extra-curricular activities and planning vacation while working on my MBA than I am with anything medical related.

 

[dick0236]

......The only thing I'll add is that there is a certain amount of self management needed regardless of who you see for your warfarin monitoring. I've found that bad advice abounds and when you're dealing with people who don't take the med themselves or primarily deal with elderly patients taking it for Afib - well, their guidance is lacking. Additionally, with some of us, odds are the people at the lab have been managing Warfarin dosing for a lot less time than we have.......
.

I fully agree with everything in Supermans post, but this paragraph stood out. My own experience is MOST of my physicians over the years, PC or Cardiologist, try to paint ALL warfarin users with the same brush. For years...and years, I just went in monthly, got stuck (either vein or finger) and adjusted to what my doc said. The internet, VR.org and self-monitoring changed that and now my doc and I work together......and, not surprisingly, warfarin adjustments and INR management have really gotten simple. Like they say, "knowledge is power".

 

[cldlhd]

I'm in the same situation. I just turned 45 , i'm active , have a 7 year old son and was just diagnosed with a bicuspid aortic valve and an acending aortic aneurysm. I'm leaning towards a mech valve and I worry more about endocarditis than a stroke. I think your chances are 1% each year like when you flip a coin your odds of getting heads doesn't increase because you got tails on the last flip so if you live another 50 years you don't have a 50% chance of stroke you have 1% chance each year but as I'm not a statistician I could be wrong.. Also I assume your behaviour and condition matters- maybe a lot of the people who have a stroke smoke 3 packs a day or have other health issue ike diabetes , obesity, inactivity? If you get a tissue valve there van still be stroke risk due to scarring and a definite need for multiple reoperations at your age

 

[dick0236]

.........and I worry more about endocarditis than a stroke. I think your chances are 1% each year like when you flip a coin your odds of getting heads doesn't increase because you got tails on the last flip so if you live another 50 years you don't have a 50% chance of stroke you have 1% chance each year.......

While I was never specifically warned about endocarditis, I was told to never allow an infection or fever go long without treatment. I take normal precautions using antibiotics, cautionary immunizations, pre-dental antibiotics, etc. and have never experienced problems that were not easily dealt with.

I also agree with your reasoning regarding stroke chances. I have had a stroke....due to my own mismanagement, many years ago that taught me the need for developing a simple regimen for taking warfarin......and I have had no further trouble for almost four decades.

Welcome to the forum.....you can learn a lot here.

 

[njean]

Hello Tommyboy and welcome to this forum!

First of, do not let my signature throw you off, if you are considering going with a mechanical valve. The two other OHS I've had, happened due to unforeseen and unfortunate reasons! The 2nd OHS was due to torn sutures around the cuff of the mitral mechanical in (1975), and the other was due to a build up of scar tissue of the aortic mechanical, which was swapped out with a brand new St. Jude in 2006! With that said, there is no guarantee that you'll never need another OHS irregardless of whether you go mechanical or tissue! In my opinion, only God knows thatr

I've been on coumadin since I was 24 years old (63 now), and it has never put any limitations on how I've lived my life. That said, I have always respected the drug and have not taken it for granted. I take it like I should and check my levels as requested . For many, many years, I tested once a month at our local hospital and the results were given to me and also to my doctor. We worked great together in keeping my PT between 2.5 - 3.5. When my old cardiologist retired and I was left floundering with inexperienced or misinformed doctors and/or medical personnel, I bought my own monitor and started checking my levels at home. I love it because I can check my INR anytime I want usually once a week.

So there you have it. You have got a choice and you have heard both sides of the story, so it's up to you to decide what you are going to do. Whatever you decide however, will be far better than your state of health right now. Speaking for myself and probably for many others, OHS gave me my life back....felt like I was reborn! I am sure that that will be the case for you too!

Best of luck to you!