29yrs - valve choice and aortic aneurysm ( difficult decision due to way of life )

[JulienDu]

Hello everyone,

I was glad to find this website and I spent few hours readings people experience and advice and it was very interesting. I really appreciate to see people willing to help and share experiences. Now, I would like to talk about my dilemma and see what you guys through your experience might think of it.

I am Canadian (french canadian, that would explain the bad grammar haha), currently living in Western Canada. I was diagnosed with a Bicupsid Aortic Valve at an early age and I had an open heart surgery when I was 10 years old to do a little repair on the valve. I went to do a CT recently and they found out that I have an Aortic Aneurysm at the Ascending Aorta ( currently measuring 4.9cm at the fattest spot ). My surgeon said we should operate now because I am healthy and I agree with him. They also check my valve and my heart. My heart functions are perfects and my murmurs is only mild-moderate but will need replacement for sure in the near future so the surgeon advice that we replace the valve now while the chest is opened, which I also agree with. My health is very strong, my blood test are very good and I never feel tired for no reason.

Now, regarding the type of Valve, I know that the common recommendation is to go with the Mechanical Valve. However, I am afraid that going with the Mechanical would go against my way of life and would like to see what you guys think. I am married with 2 young Children. To earn my living, I am a Log Home Builder ( if you guys watched the show "Timber King", thats what I do ). So it is a physical job, I am carrying heavy Chainsaw half the day and I hurt myself now and then ( cutting mylself, falling ) and as I understand this could be problematic when being under Warafin. In the winter, when the job slow done, I go live in the bush in total isolated area for 3 to 4 months where I run a trapline ( can be dangerous now and then ) . I really wish to carry on that way of life and to raised my kids this way and I am afraid that going with the Mechanikal will force me to change my life.

My surgeon is very open and although he originally suggested the Mechanikal Valve due to my age and he is not against me using a Tissue Valve, I only met him once and have to talk to him more.

So, if some of you could share some experience considering my situation, it would be great.

Thank You guys

Julien

 

[pellicle]

Julien

welcome aboard. My grammar issues are due to me being Australian, so I promise to not correct yours if you don't correct mine ;-)

I see you say that you've read around here a bit, so probably you've read my posts (and probably everyone else's here who's a regular). I'd say that we don't change our minds too much.

Like you I had a surgery at about 10, to repair my valve, and also like you I faced a replacement at 28. I got a homograft (a cryopreserved valve from a human). I got 20 years from that valve - which is extraordinary.

On what type to choose my view is "it depends" - and the criteria that "it depends on" are your youth and your activity. Both of which will bias selection towards a mechanical valve. If you look here you will see time and time again someone under 50 saying "I'm too active" and guess what ... they are the ones prone to "wearing out" a tissue valve faster.

I see totally nothing about your job that would preclude a mechanical valve and AC therapy (meaning warfarin, coumadine) - especially if you test your self and monitor your INR yourself. You will need time off work anyway during the healing process and so you'll have time to learn how to do it ... plenty of time really. I have blog posts on how to do that and have received many thanks from people who have followed those suggestions (because it has made it easier, given them freedom and given them confidence).

I have said many times here that if the AC therapy monitoring systems available today were available I was 28 then I would wish for a mechanical valve (not the homograft I got). Of course they were not and I did not. What I did get was an infection during my 3rd operation to put my mechanical in (to replace the worn out homograft). I am still on antibiotics and discussion with specialists is that its risky to ever go off them. I do not see surgical infection risk rates getting smaller but I do see increasing trends towards antibiotic resistant strains of bacteria.

Especially that you are already going in for an aneurysm repair I'd say that the most common reason for replacing a redo operation with a mechanical valve is either aneurysm or panus formation. I do not know, but I could (probably should) dig around and see what the incidence of panus is on modern mechanical valves.

I would expect that if you get a bad injury in your work there will be essentially zero difference in wound management due to being on AC therapy.

Personally people who have seen me bleeding (such as dentists or doctors) expressed surprise that my bleeding was no different to the ordinary population. This says a few things to me:
1) mostly medical practitioners have zero idea what visual difference AC therapy has on injury and only rely on "stories" taught with no evidence
2) well managed INR (under 3 most of the time) presents very little problem. In fact every incidence I've read here reflects that problems happen with INR out of range.

I use power tools, ride a motorcycle and go hunting and XC skiing ... all of which I do without any extra worry even though I'm on AC therapy

I have dragged my INR testing kit from Australia (and around it) to Finland and the UK ... its with me to allow me to do my weekly test, and takes no more effort than my phone (less actually as it uses Alkaline batteries which last about a year) which I usually keep in my kit.

View with caution the idea that multiple surgeries are "no problem" (indeed I find it curious the transformation from terror and fear before the first surgery to the approach that multiple ain't so bad). Be cautious in understanding the basic premise that AC therapy is just as risky over time as redo surgery. There are a few reasons, for instance YOU can managae your INR but you can not manage what happens in surgery. Also the "literature" focuses on death outcomes when comparing the two, it does not include the problems of hospital acquired infections on your redo, nor does it take into account degraded quality of life if your redo outcome meant you had a permanent removal of your sternum bone (due to infections, and yes it does happen) or you required a pacemaker.

The INR requirement is being revised down on modern valves, which of course means that AC therapy can mean less impact on your life. Currently its target INR = 2.5 for aortic valves, but it may go down to INR = 2 (which is a target not a range, a range for target = 2 would be like 1.7 ~ 2.5). On-X is already advertising this, and after the recent European Studies I expect that it may go down for all the other pyrolytic carbon valves.

Lastly I'll say that if you get a bunch of flowers vs a flowering plant in a pot the outcomes are clear: the flowers will eventually die no matter what, however the pot plant may live for many decades with care. So what I mean is that you can find people here who had a mechanical valve put in in their youth (less than 40) and still have it without operation (dick for instance) but you can not find the same with a tissue prosthetic. You are 30, so if you get 12 years (and thats an if, as you may get less, you may even get 2 years as you can find here) then how many surgeries, how many opportunity for infections, how many times to worry your family will that be?

So in short I agree with your surgeon.

Best Wishes

Happy New year and keep your fear of chainsaws

 

[dick0236]

Hi Julian and welcome. Like you I was young(31), married with two young children and had literally just graduated college. My surgeon and cardio told me it would be best for me to "find a desk job with a large company with lots of insurance benefits". I spent ten miserable years following that advice before I realized you can't put a "square peg in a round hole". I have little experience with a "chainsaw" but have a lot of handyman experience with a "skilsaw"......even built a lake cabin(not log) in my late 40s. Either saw will cut your leg off and you will have bleeding problems on or off warfarin. I have had my share of cuts without "bleeding out". Living in isolation several months a year should be no different regardless of valve type.....and the risk of serious accidental injury without help should be a major consideration. I have a number of friends, all in their 70s and 80s, with tissue valves and all seem to be doing well.......but their activity level is not that of a young man. From what you've said your activity level will burn thru a tissue valve pretty quickly and you'll face re-ops all over again. Good luck in your decision

 

[JulienDu]

Thank You Pellicle and Dick0236

@Pellicle

Yes I read about your story and was really surprised that our situation are/were almost exactly the same. You are actually the first person I talked to that has exactly the same history as mine, except the aneurysm. Your story is very positive and it is true that if you had avoided a third operation you would have been free of this infection that is now forcing you to take antibiotic.
I also read like you that with the new Onyx Mechanical Valve, you might be able to take only low dose of aspirin. I am surprised to hear that your bleeding episodes are not so significant because as you said that is all we hear about the Waraffin.

I see that you do a lot of outdoor winter activities. I am always always outside in the winter in very cold temperature and I was told than thinning the blood make much more vulnerable to cold weather, what is your experience so far ?

Also, what happened if you are 3 to 4 months in an isolated area. As far I understand, the labs have to adjust the dosage of medication according to your self INR test. How can you deal with that during such a long period ?

You said you are a very active man, so did you notice difference in your physical capacity between the tissue valve and the mechanical valves and between your original valve and your tissue valve ?

@Dick0236

So you have lived with a Mechanikal Valve for over 48 years now ! That is quite impressive. Reading your profile, I see you had a Stroke and you think this was caused by a bad management of your INR ? Back then did you have access to home test kit ? During those 48 years, was it the only issue you encounter regarding to your medication ? I also see that you lived with no diet restrictions so you really would eat anything you like ?

So you basically regret following your surgeon advice to live a Desk Job life for 10 years ?

And what about impact, have you guys experience bad fall from wall or while skiing or other violent impact ? Is true you develop Oedema very easily ??

Thanks again guys, that is a lot of question but I do not get to talk to people in my situation and I feel that talking to the surgeon only is not enough for now.

 

[dick0236]

1. My stroke occurred the day I returned to work after a week long fishing trip when I had forgotten to take my warfarin with me. Back then(1974) patients didn't know a lot about ACT or the need to "take the warfarin as prescribed and test routinely.
Looking back I think it was the result of a "perfect storm"....returned from a vacation to a very stressful job with a near normal blood coagulation....and threw a clot.

2. No, home testing was not available....nor was the INR testing system. It was more of an "art" than a "science" back then and the primary warning from doctors was "if your urine turns red cut back on the coumadin/warfarin". They had no advice for recognizing an impending stroke due to clot.

3. The stroke was a hard lesson and I have had no further issues since.......but I make sure I take the warfarin as prescribed ant test routinely....I use a seven day pill box to assure I take the med and I have been home testing weekly for the past few years.

4. I have never had any diet restrictions and I eat a balanced diet that includes vit K foods on a regular basis. There are a "handful" of foods that I tend to limit, but not exclude, since they are very hi in vit K.

5. Yes, I regret taking their "conservative" advice. However, I now have the benefit of almost 50 years of "hindsight"....and their advice was given when OHS was new and a very big deal.

6. Hard impacts leave me with some "dandy dark blue bruises" and soreness but nothing lasting......so far LOL

7. I had to look up Oedema in the dictionary.....and no, I have never had swelling of joints....but that does explain why doctors always look at, and feel my ankle joints.

 

[MethodAir]

Julien


Especially that you are already going in for an aneurysm repair I'd say that the most common reason for replacing a redo operation with a mechanical valve is either aneurysm or panus formation. I do not know, but I could (probably should) dig around and see what the incidence of panus is on modern mechanical valves.

According to this link, the Pannus 'mostly involve the suture line'? With the On-X ascending aortic valve prosthesis, the suture line is away from the valve. Would this reduce the incidence of Pannus on the mechanical valve?

 

[pellicle]

Hi

I also read like you that with the new Onyx Mechanical Valve, you might be able to take only low dose of aspirin. I am surprised to hear that your bleeding episodes are not so significant because as you said that is all we hear about the Waraffin.

it is surprising to me too ... but my experience is what it is and my reading suggests I'm not alone. I believe that it is mainly due to mismanagement of warfarin. Warfarin is (like quite a few drugs) a "narrow theraputic range drug" ... actually almost exactly like insulin is. If a diabetic mismanages their insulin they will suffer for it too. If they get it right they will live "normal lives".

I see that you do a lot of outdoor winter activities. I am always always outside in the winter in very cold temperature and I was told than thinning the blood make much more vulnerable to cold weather, what is your experience so far ?

happily I had never heard such, so ventured out into -20C as I normally did. I noticed no difference. Back in Finland in 2014 I went moose hunting with my friends and we sat on our arses in the cold (it was about -15 or so) not moving and quiet for a few hours. I found it no different to earlier years. I personally feel that the reports of "colder" come from people sitting inside more and being less active after surgery.

I'm quite a stubborn bastard and after my first operation refused to give up riding my MX bike (my surgeon used to regularly kid me that it would be the death of me, I suspect other causes will be involved). I have given up MX now (going to Uni fixed that) and have since turned to leg power for my outdoor stuff.

Also, what happened if you are 3 to 4 months in an isolated area. As far I understand, the labs have to adjust the dosage of medication according to your self INR test. How can you deal with that during such a long period ?

following on from being stubborn I took up monitoring my own INR and doing my own dosing. I have not spoken with any Dr about my dosing but have shown my surgeon my graphs and reports of my own work once, after which he remarked that I did better than anyone else he sees (and I am the only self manager he sees). I was in Finland for a year 2013/2014 and did not see a doctor.

Here for instance is my 2014 data of my INR and my dose. You can see some interesting trends and I learned (am still learning) some things from that.

you are a very active man, so did you notice difference in your physical capacity between the tissue valve and the mechanical valves and between your original valve and your tissue valve ?

if anything its better, but of course its hard to know because it is the nature of tissue valves to slowly degrade, and to increase the rate of degrading rapidly closer to failure time. So my last 5 years with my previous tissue valve will be of course worse. I noted that on the ski tracks my time around parts of the track were equal, although my technique was better (I only started skiing in 2006 after I met my wife who is Finnish). This trip back to Finland I was finding my fitness up substantially (not something one expects when comparing 45 to 52yo) and indeed did a 15km bash across the lake, through forrest (no track, irregular surface, 25cm snow depth) in about 2.5 hours. I was pleased with that effort.

Next winter I expect to be out doing this with my Finnish Friends (this is Lari, his best side photographically)

If you wish, I would be happy to chat and listen to assist you to bring out points. email me if you like (my username) at hotmail dot com and we can skype or perhaps talk by phone to a land line (as canada is cheap on my plan).

Best Wishes

 

[pellicle]

Hi

According to this link, the Pannus 'mostly involve the suture line'? With the On-X ascending aortic valve prosthesis, the suture line is away from the valve. Would this reduce the incidence of Pannus on the mechanical valve?

I've been dabbling in readings about Pannus for a few years now and that's the first I've heard of the suture line, but it is not unexpected. My personal theory (for what that's worth) is that its an effect of the natural epitheliziation of the interior of the heart to extend over (and thus protect from bacteria) what would appear to be damage to the interior chamber. Such damage can be caused by disease (such as scarlet fever) which leaves scars and thus a place to grow for bacteria (should they venture in to the blood stream and become vegatitive before the white blood cells kill them off).

I've seen other images which show this, such as:

and:

however panus remains not yet well understood probably because its rare and coordinating research is difficult.

This article discusses much older valves which are now discontinued, because it takes years to from and then some years to collate the data and publish:
http://www.ncbi.nlm.nih.gov/pubmed/16998706

for instance even though it was publihsed in 2006 they write:

We reviewed our clinical experience of all patients who underwent reoperation for prosthetic aortic valve obstruction due to pannus formation between 1973 and 2004

none the less they say

Pannus formation after aortic valve replacement is not common,...

even later journal articles suggest similar things
http://www.cardiothoracicsurgery.org/content/7/1/62

published in 2012 it suggests:

Prosthetic valve dysfunction at aortic position is commonly caused by pannus formation. The exact etiology is not known. It arises from ventricular aspect of the prosthesis encroaching its leaflets causing stenosis or it may remain localized causing left ventricular outflow tract obstruction without affecting valve function

which is perhaps consistent with my view of its pathogenisis.

The valve makers have included some changes to discourage panus growth impinging on the valve leaflets (and obstructing them).

It remains rare and I know of at least one person here was reoperated for it, another avoided it as (I had suspected) it turned out to be obstruction by thrombus and was treated non surgically with new PIC delivered "solvents" to break it up.

 

[W. Carter]

No matter what you hear or read Warfarin does change the way you live, and the more active and more dangerous things you do it is even more of a burden. If you don't mind the re-operations the tissue valve will be more like your original valve. If you are real active and don't want to hassle with clinic or home blood testing your INR I would recommend a Dacron graft and tissue valve. That way the only thing you will have to worry about is when it will wear out and re-surgery. I'm not a doctor but I imagine your surgeon will recommend the same with your lifestyle. With me it isn't the diet restrictions which are rather few, it is all the meds , otc and prescription that dangerously interact with Warfarin that is a hassle.

 

[pellicle]

Hi

No matter what you hear or read Warfarin does change the way you live,

Of course it does, but how much does a reop effect your life and what of the outcomes from the possible damage to you during a reop? Of course its risk evaluation.

How many reops have you had? As i understand it you were 58 on your first OHS. The discussion is around a 29 year old already facing his second. What do you think will be the results when he is facing his fourth?

You are correct also that being on warfarin makes juggling other medications problematic. If one is on medications that is a significant factor. But if one is otherwise healthy with no other co-morbidities then reoperations are more likely to be a threat to your health than well managed INR is.

 

[W. Carter]

Hi



Of course it does, but how much does a reop effect your life and what of the outcomes from the possible damage to you during a reop? Of course its risk evaluation.

How many reops have you had? As i understand it you were 58 on your first OHS. The discussion is around a 29 year old already facing his second. What do you think will be the results when he is facing his fourth?

You are correct also that being on warfarin makes juggling other medications problematic. If one is on medications that is a significant factor. But if one is otherwise healthy with no other co-morbidities then reoperations are more likely to be a threat to your health than well managed INR is.

Your right, if it was me and I was 29 there is no way that I would get a tissue valve. I would do exactly what I did at 57, get a mechanical valve even with the hassles. This young man sounds like he is dead set on tissue and thats that no matter how many valid points are made. If I were to look into my crystal ball to the future, it would say thats the way he went.

 

[pellicle]

Hi

. This young man sounds like he is dead set on tissue and thats that no matter how many valid points are made. If I were to look into my crystal ball to the future, it would say thats the way he went.

That isn't the feeling i get. When i went to see my surgeon after my aneurysm was found i wanted information about both choices. My surgeon initially posed mechanical (as in his case) and i was worried (and largely ignorant then too) about warfarin. At that time i weighed what evidence i had and decided in mechanical for the reasons that I did not want a 4th surgery and its very increased risks and I thought management of warfarin would be doable.

I had reservations about warfarin and faced a generalized nonspecific view that it was "bad". Perhaps this is what drives this mans enquiry?

Accordingly I am trying to give him all the help i can to allay his fear of the unknown and help him make a fully informed choice.

 

[neil]

hi pellicle hows it going mate ? I think whatever choice he makes will be a good one, I guess everybody is different and sees things in different ways hence all the debate about mech v tissue,

 

[pellicle]

Hi Neil ... yeah, going OK mate ... happy New Year to you, hope all is well your end too

hi pellicle hows it going mate ? I think whatever choice he makes will be a good one, I guess everybody is different and sees things in different ways hence all the debate about mech v tissue,

agreed ... I only try to make sure its information not mis-information upon which our decisions are made. Imagine if one were to decide to avoid warfarin because some silly duffer told you it meant you couldn't eat what you want and found years later you could have eaten what you wanted?

in the end it will be his decision of course.

best wishes

 

[BAVCyclist]

Hi Neil ... yeah, going OK mate ... happy New Year to you, hope all is well your end too



agreed ... I only try to make sure its information not mis-information upon which our decisions are made. Imagine if one were to decide to avoid warfarin because some silly duffer told you it meant you couldn't eat what you want and found years later you could have eaten what you wanted?

in the end it will be his decision of course.

best wishes

Great point. I was first put off about the thought of blood thinners and dietary restrictions until I did a little more research and found that diet is manageable, not necessarily restricted while on warfarin\coumadin.

Bonjour, Julien! You and I appear to be in similar shape except you've already had one procedure. I'm 32 and have BAV with an ascending aortic aneurysm of 4.7cm. My surgeon recommends the Ross procedure for me (I haven't decided yet though, I have time), but he's an expert on it. The Ross had distinct advantages and disadvantages, but could be another option, if you're not already aware.

I'm not recommending it, but I believe it's important to have as much information as possible when making a decision like this. It could be worthwhile to ask your surgeon.

 

[Fundy]

They also check my valve and my heart. My heart functions are perfects and my murmurs is only mild-moderate but will need replacement for sure in the near future so the surgeon advice that we replace the valve now while the chest is opened, which I also agree with.

Julien

I might think this over a bit if your decision is tissue valve. I'm thinking you might go with an Edwards tissue and get ten years before a reop. But if you stay with original you might get even longer and not have to worry about scar tissue and removing the tissue valve at reop. Considering your mild moderate I'm guessing many experts would suggest 10-20 years, maybe more before a replacement would be needed. At moderate-severe I was told 5 was a good guess but ten was just as reasonable.

If your going with a mechanical maybe replacement at this time is best, but if it were me and if I were looking towards tissue as the long term solution, I'd probably just get the aneurysm fixed this time if my cardio and surgeon suggested 10-20 maybe more for valve as it is. At your age I'd bet on your original valve at mild-moderate outlasting a brand new artificial tissue valve.

 

[JulienDu]

Thanks you guys for those comments it is helping.

@W.Carter

Yeah you're right, when you are 29, in good shape, working physically outdoor, never took any med in your life, you tend to be more attracted by a tissue valve because of the fear of the Warfarin treatment, but that is why I came on this forum as Pellicle says, to gather experience of people on Warafin treatment that are also very active.

So according to your experience ( and others ), the main problem with this treatment is when it comes to associate it with other medication ? This would me your major concern ?

@BAVCyclist

Never heard about this ROSS technique before you mentioned it. I will talk about it to my Surgeon as he only mentioned Tissue or Mechanical. From what I v heard, this surgery is not commonly done ( under 2% of the AVR) and only specialized enters are doing it, could be a reason why my surgeon never mentioned it.

Also, my question is looking at the new St. Jude Medical's Trifecta tissue Valve and its potential for longevity, could the ROSS technique be outdated ?

@Fundy

That is a very good point. As I saw my Surgeon and Cardiologist only once, I did not cover all the points yet even if they plan the surgery this January. They both told me that if I did not have the Aneurysm they would not have touched my Valve because the murmur is only mild moderate (my Mgradient is 18mm Hg). Now, the surgeon told me that he would not give 15 years to my valve and we could have to change it in 6-8 years because of my strong physical activity, and this could damage my heart functions that are still perfect for now. I was kind of surprise that they told me that cause I was reading that they only replace the valve when it is severe to very severe.

Also, they told me that the Bicuspid valve was the primary reason for the aneurysm at a young age ( in addition that to other factor like strong physical activity) and I forget to ask if keeping my actual valve could create aneurysm in other location of my body, so if you guys have some experience on that let me know.

And Fundy, I see that you have a St. Jude Medical's Trifecta so I was wondering what did you surgeon told you about her potential longevity and could you have a TAVRs operation to fix it ?

 

[MethodAir]

Last year at the age of 43, my surgeon replaced my bicuspid aortic valve and ascending aorta with this prosthesis:

With consistency of diet and dose, Warfarin has not been difficult to manage. Once you get in the groove, it can be effortless.

Without consistency, I could see it definitely becoming a big issue. If the INR starts getting way out of range (which it shouldn't with weekly self testing), it's not like you can say, 'ah, I'll get to that next week'. As others have noted, it's Warfarin vs. multiple re-ops.

 

[Northernlights]

Mechanical versus tissue is always discussed here as warfarin or 'multiple' re-ops, but if you choose repair/ tissue/ homograft or Ross now, that does not commit you next time (whenever that will be) to the same choice. It is perfectly reasonable to choose a non- mechanical valve which will be easier to manage in the wilderness, and enjoy those years without warfarin, and then choose a mechanical next time, when your risks will be basically the same as the first time - minimal for someone young in good health. Young women who still wish to have a family do this all the time. Valve choice is not a cult you can't leave!

But is your mean gradient really only 18? If it is, and there's nothing else wrong you haven't mentioned, it seems extraordinary to replace your valve at this point. Anything under 20-25 is only mild, and a lot of people have prosthetic valves with a higher gradient than that. It is easy to follow-up valves with echo and operate before any heart dysfunction. There is a reason bicuspid valves aren't replaced till severe stenosis!

Where are you having this done?

 

[JulienDu]

Northern Lights

My first choice was to go with Tissue because of my worry to manage my INR in the wilderness and also the risks and impact associated with that life. That's why I came to this forum to learn from other people who have a rough life and manage their INR.

Yes my mean gradient is only 18mm. The last time I did an ultrasound was 14 years ago, I was 15 and my mean gradient was 11.5 mm. ( I used to not care about heart condition, thats why I never checked on my heart till this year). I am not sure, that is a question to ask my surgeon, I think he wanted me to avoid another Open Heart Surgery but I am asking this question to myself a lot,

Supposed to have this done by Dr Macarthur, at the Mazankowski Alberta Heart Institute, in Edmonton Alberta, Canada. Supposed to be one of the best heart Institute in Northern America