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

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pellicle

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Good morning

JulienDu;n861735 said:
So I just came back to see my surgeons and he was surprised that a redneck brought so many informations with him this time, thats thanks to all to all your comments here.
:)


So I wanted to share with you his opinion and see what what you think.
OK


First of all, he told me that he does not want to experiment or try new technologie that have not been proven for a certain numbers of years on me because I am 29 years olds with 2 young kids and a very good health so he will rather stay with conform procedure.
appropriately prudent

As discussed before, my MGradient is only 18 hg so I was wondering ( and others on this forum) why he would replace my valve instead of going for a Sparing procedure. Well I just learnt that my left ventricule is close to be dilated and that in couple years he might be dilated so that is why he wanted to use the opportunity of the open surgery for the aneurysm to replace the valve before it damages the heart. I do not know what you guys think that now makes more sense
seems logical to me. When we know it is inevitable that you have surgery (for the aneurysm) it seems prudent and logical to prememptively replace something which as it fails will do you damage. Of course there are additional burdens (like AC therapy) brought to you earlier and there "is a chance" (however slim) it does not require operation ever.

He does use the Onyx and the St Jude. He told me that the St Jude is a very solid choice due to its history. However his preferences now lean towards the Onyx because of the cylinder that prevent the Pannus formation. For him the lower INR range does not affect his decision as he believes St Jude and Onyx can handle the same dose of INR ( Onyx marketing is however stronger he told me).

Another detail, he said that the only reason he would put me a St Jude during the operation is if my opening is too small as the St Jude fits smaller space than the Onyx. He said, a smaller valve has higher chance of damaging the heart of an active person and the risk is higher than a Pannus Growth. So if he cannot fit at least a 23 or 25 Onyx valve (I can not remember), he will go St Jude.
I agree about the pannus formation deterent on the On-X but I'd also ask about the "aortic graft pre attached" version of the On-x valve as that may save time / reduce possible complications during surgery from extra stitching.

He probably knows about it, but I'd raise it in case he doesn't.

He strongly suggest Self test at home and lean towards self management. He told me to never take for granted what the clinic says for the dosage and to always questions their decision if I do not agree. ( that unofficially mean to go for self management).
:) well you know which side of the fence I stand on that one ...

Also he told me that going crazy with a chainsaw won't be an issue with the AC Therapy so that s great and confirm what some of you guys told me

My pre-op is the 24 ( 7 hours in the hospital to get ready for the surgery) and the surgery should be a week or so later.
well, best wishes for surgery, I wish you an uneventful recovery

no matter what you think stick to the advice for the first 8 weeks ... do not press the boundaries and be tarzan in recovery.

:)
 

cldlhd

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Fwiw, not much but hey, I think it sounds like a good plan of action. If my valve was replaced that's what I was planning on also. I assume the 2 choices for replacement were either tissue or mechanical with the dacron graft and both are proven with each having it's own plusses and minuses that have been gone over here already. I agree that at your age choosing mechanical over tissue is the way to go . So I wasn't sure what the unproven technology was.
 

DachsieMom

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Very interesting! Particularly the part about valve size. I have a st Jude 21 mm conduit (the graft is attached). My surgeon said he was pleased that he was able fit what he considered to be a large valve for my size (I am only 4'9" with apparently "delicate" organs so I think he assumed he might need a smaller size). While I did not delve too much into valve choice prior to surgery, my surgeon said he wanted to use a trusted valve (he has been doing valve surgeries for years). I sometimes wonder why my surgeon did not use an on-x, but perhaps the 21 mm size was the reason. Or the fact that I had a conduit.
 

spartangator

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Thanks for the update. Glad it all seems to be coming together so reasonably. I'll echo pellicle's comments: take recovery seriously. Your body goes through a lot and needs the time rest, even after you start feeling better.
 

MethodAir

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Good start and I agree w the direction. As mentioned, I got the on-x ascending aortic valve prosthesis.
 

MethodAir

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Heres my take post op...stationery bike with some intervals. I skipped the cardio rehab. Weight training for your legs asap. Consider taurine, carnitine, arginine, d ribose supplementation.
 

neil

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at your age mech is a good choice, you have made your choice so good luck and am sure you will do just great
 

JulienDu

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hello

cldlhd

Thats is a good point, I did not talk to the surgeon about an eventual repair although I already had a repair done 19 years ago on this same valve. Never asked him if it was possible to repair it a second time and what would be the projection over the long term. I will call him and ask him

pellicle

About the graft, yeah I was also wondering why he would do his own sewing, if i can remember, it is either because he trust the St Jude Graft because of its history or because he considers it to be of superior quality, I will have to bring that point to him again, make sure I understand

DachsieMom

Yes, he also really like the St Jude but would only use it now if he can not fit a big enough Onyx
 

Turkey Hunter

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JulienDu;n861362 said:
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
I just underwent my 2nd valve replacement and chose the On-X mechanical. I also live a very active lifestyle. I shoe horses. A farrier!!!! Every move you make can be very dangerous and adding Coumadin/warfarin to the mix wasn't really part of my decision.
If you have a home test and keep your Coumadin, INR, under control you should be fine. Just my 2 cents worth.
The On-X is approved for an INR from 1.5 - 2 which is substantially lower than many other valve types.
 

cldlhd

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Oh I wasn't aware it had been repaired before. I know the techniques have changed but I guess the previous repair could change things.
 

JulienDu

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Hey guys

Just came back from a couple days trip in the bush to breathe some nice fresh air before the op.

Just got given my date, it is thursday the 4th of february.

Decision is a graft with a mechanical valve, an Onyx because I like the Pannus Barrier or a St Jude if it fits better.

Not really happy to be on that médication as I have been an anti-medication guy but with a wife, 2 kids and a third on the way I do not want them to have to live through the stress of another surgery and I do not want to be a useless pièce of méat for my wife to take care of in 20 years !!! ( ill be less strong and attractive so she might just chase some youngers guys haha)

Stress is slowly starting to question my décision haha, I guess it was the case for many of you guys !

Thanks again for all the comments and advise and as soon as I can write again I will give you some news !
 

rakesh1167

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Best of luck Julien. Would be waiting for your post op report. I will also be going through AVR within few weeks. I have also choose mechanical (I am 32 years old).
 

pellicle

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Hi

JulienDu;n862225 said:
Not really happy to be on that médication as I have been an anti-medication guy but with a wife, 2 kids and a third on the way I do not want them to have to live through the stress of another surgery and I do not want to be a useless pièce of méat for my wife to take care of in 20 years !!! ( ill be less strong and attractive so she might just chase some youngers guys haha)

Stress is slowly starting to question my décision haha, I guess it was the case for many of you guys !
I understand how you feel ... I was discontent (well I still am) with needing to be on a medication for the rest of my life. Strangely I had expected it to only be warfarin, not that and antibiotics.

For myself I put it down to it being a milestone towards aging which I did not want to accept.

So I got it at 48 ... some get "on the drugs" earlier, some later ... we all get older.

Best Wishes for a smooth and uneventful recovery.

Abientot
 

dick0236

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Best of luck Julian.....and I look forward to your post surgery post. From a few months after my surgery warfarin was the only daily drug I had to take until my late 60s...when my docs added some "old people" meds for BP, etc.
 

Paleowoman

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Wishing you well for your surgery Julian. Lots of people have to take medication on a daily basis, nothing to do with age either. I have diabetes, not related to age or lifestyle but a 'monogenic' form - I have to take medication for that and I have to test my blood glucose levels with a finger prick test. Also have small airways disease which is a bit like asthma which was caused by pollution (and I think my parents smoking all through my childhood) and I have to use an inhaler daily for that. And I have to take meds for my osteoporosis which again is not age related ! I look at this with the view that without those medications life would be a lot worse !
 

MethodAir

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Good choice...once I got my head around needing surgery, mechanical was the only option for me.
 

ScribeWithALancet

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I didn't say eat all the high vit K you can handle, just that you don't need to worry about it when you eat sensibly. But I see that there is no point in trying to assist an expert ... I mean its not like any of "us guys" actually have any experience in this or manage ourselves

Best Wishes I will not trouble you again
Pellicle,

My previous Coumadin Pharmacist had me eating 2 ounces of Spinach a day (about 306 mg of k). This minimized the variance of my INR tremendously. At the time I did not eat other greens since I could not easily get the right amount of K1. I now own a chemist's scale and can eat a half cup of most greens and 3/4 cup of a couple others without going over 300 mg of K1. I then take a split K1 pill to get it to within 300+- 12.5 mg of K1 per day.

I had become prediabetic and so obsessive about how much I consumed in carbs and it was easy to create a spreadseet that tracked both my K1 consumption and my carb consumption. Following Dr. Richard Bernstein and Dr. Atkins' books on diabetes, I am no longer pre-diabetic and my A1c is down to 5.0. (They said to reduce your carbs to 100 mg a day and if that does not work, reduce down to <30 mg per day) For me, it took going under 30 mg per day. Unfortunately, most foods low in Carbs are High in K1. Fortunately, I have actually developed a taste for greens with lots of cheese and various recipes my wife has found.
-
I am being very slow in mastering my (CoagSense) INR meter. (acquired a month ago) The art of getting the right amount of blood onto the strip in the right amount of time is difficult. With my wife's help, I am slowly getting better at it.

When I get blood on it within about 20 seconds my INR is between 2.9 and 3.2 which is right in the middle of my target range of 2.5 to 3.5. When I am noticeable pokey (which is about half the time) I get between 2.1 and 2.3. I use a BattleCreek ThermoPhore Muff to heat my hand for three minutes before the poke. That helps the blood to get out and form a drop quickly. I learned that from my Blood Glucose Meter days. Warmth really makes a LOT of difference. I noticed that you and Protime both recommended warmth. Thank you both for your posts about meters and how to use them. Your posts have been very helpful in building on what I learned about blood glucose testing.

Walk in His Peace,
David,
Scribe with a Lancet
 
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pellicle

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Hi

Pellicle,
happy anything I've written helps others (it is of course why I do it)

FWIW occasionally I go "ultra low carb" (but its hard when visiting friends on weekends and they eat pasta, or rice or pizza). Staying at home on the weekdays I can manage it (although I do like my oatmeal porridge).

My previous Coumadin Pharmacist had me eating 2 ounces of Spinach a day (about 306 mg of k). This minimized the variance of my INR tremendously.
to be honest I've not found anything consistently over the years of looking that does for me ... or exacerbate it either.


I had become prediabetic and so obsessive about how much I consumed in carbs and it was easy to create a spreadseet that tracked both my K1 consumption and my carb consumption. Following Dr. Richard Bernstein and Dr. Atkins' books on diabetes, I am no longer pre-diabetic and my A1c is down to 5.0.
that's excellent news, and I have a friend who did similar going to an almost zero carb diet he's now no longer needing insulin.

(They said to reduce your carbs to 100 mg a day and if that does not work, reduce down to <30 mg per day) For me, it took going under 30 mg per day.
mg ... not g? Wow, that's almost keto territory ...

Unfortunately, most foods low in Carbs are High in K1. Fortunately, I have actually developed a taste for greens with lots of cheese and various recipes my wife has found.
every cloud has a silver lining ;-)

I am being very slow in mastering my (CoagSense) INR meter. (acquired a month ago) The art of getting the right amount of blood onto the strip in the right amount of time is difficult. With my wife's help, I am slowly getting better at it.
perhaps sitting phone on a small desktop tripod and recording it would be helpful? I initially used to record my doing it just with audio and calling out what I was doing. Playing that audio back and seeing the timelines helped me to become consistent.

When I get blood on it within about 20 seconds my INR is between 2.9 and 3.2 which is right in the middle of my target range of 2.5 to 3.5.
excellent!

... I use a BattleCreek ThermoPhore Muff to heat my hand for three minutes before the poke.
interesting. Myself I've taken lately to doing it standing, and use the warm up time to keep my arms by my sides, relax and (based on old meditation techniques) relax till I hear the beep ... by then my fingers are usually plump with blood.

Best Wishes
 

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