Please help me out! :(

[Jason]

May i ask, do you guys actually live with fear or becoming more precaution in life?
I do understand a lot of people advise to do own INR self-testing and bring home meter along when travel. However what should i do if my INR is not within the range during my overseas trip? Do you guys actually reduce or increase your own dosage to get back your INR range or wait for doctor advise?

I read up high INR do actually cause you to bleed easily. (Bleed from gum, urine etc.) May i know is that true and common?

My post surgery guide book stated low salt on my diet which including gravy and soup in the future. May i know salt & cranberry is very harmful for all warfarine users?

Sean,

I had a lot of the same thoughts going through my head prior to my surgery in 2011. I had a surprise surgery caused by an expanding aneurysm, not the valve. I had very little time to prepare for it and unfortunately found all of the wrong information on the web before I found this website with actual members who will relate their own experiences. To answer your questions:

No, I don't live in fear. Before my surgery I thought that if I bumped my head while on warfarin I would develop a brain bleed and die. Seriously, that was one of the concerns I had. Now I live life as I did before, with the exception of taking a few pills each night and monitoring my INR weekly. For the first year after surgery I was part of an INR clinic with self testing, where I would test and call it in. They would change the dosages based on what a formula that was quite easy to figure out, and once I understood what they were doing I realized that I could probably steer it better. The clinic was either required or felt obligated to adjust my dose every time it was out of range, regardless of how much. My range is 2.5-3.5, so if I had a 2.4 or 3.6 they would raise or lower the dosage by 10%. After a few weeks of this I would be at the other end of the spectrum, and they would take it the other way.

Fast forward a year and I moved to Australia, and since that time I have been self-monitoring and self-dosing, and more successful at keeping the swings out of my INR. I go in every so often and have a blood draw to ensure that my INR machine is close to accurate, and other than that I review my history with my GP when I have a check up. He is happy with this approach, with the caveat that if I get too far out of range (less than 2 or higher than 4) I need to call him and start more frequent blood draws. For the last two years I haven't had anything out of this range.

I haven't noticed any excess bleeding at all, just a higher propensity to bruise. I have never had bleeding gums, bloody urine, etc.

I think every post surgical guide that you see will say to use a low salt diet, as this is just healthy living. It is a good approach to life whether or not you have had heart surgery. In my case I had high blood pressure prior to surgery, and quite low blood pressure directly after. It has now levelled out at slightly lower than perfect, running 115-120 over 65-75. If my blood pressure was elevated, I would cut back on salt and watch a little more closely, but so far it doesn't seem to be an issue.

I am glad to see you here on this site, as it will counter some of the misinformation you might find on other sites, and also calm your fears. It is good that you are researching and asking questions, and getting answers from others that have been there and done that. Good luck, and look forward to hearing about your surgery and recovery.

 

[Seanskx]

Thanks Jason for sharing your personal experience. Appreciated
I guess i will pick up the habit to have my medicine daily along the way.
However is really sad to say goodbye to those normal carefree days and welcome a brand new life.
5 more days to face my AVR surgery. Fear is pounding.
God Bless for all

 

[njean]

I think you will do just fine with your new valve.

Wishing you all the best and we'll be waiting to hear from you when it's all over and you're on the road to recovery!

Best wishes!

 

[dick0236]

However is really sad to say goodbye to those normal carefree days and welcome a brand new life.

I believe you will be pleasantly surprised about how little warfarin will impact your life. Good luck and be sure to come back and let us know how things go.

 

[tom in MO]

God bless you as well Seanskx.

Having an AVR is like going on a nasty roller coaster, the ride looks like it would kill you but you'll come out fine at the end.

 

[ManiSham]

hi Sean,

I'm 28 now and I got my AVR (mechanical) when I was 19. To be honest I haven't missed out on anything I wanted to do in life. I'm not hugely into sports but I go to the gym and keep active. I travel as well and change my diet frequently but for the past 9 years it has not impacted my INR levels so I'm sure you will do fine

All the best on your surgery and hope you recover soon and go back to your usual active life.
God bless
ManiSham

 

[Paleowoman]

Wishing you the very best for your surgery and that you have a smooth ride !

 

[chaconne]

Seanskx,

Regarding vitamin K rich foods: I started having a fascination with eating Broccoli, Spinach and Kale AFTER I was on Warfarin, and I eat a lot more than I ever did before. I guess it's human nature to do the things people warn you not to. I have not measured any significant effect on my INR, which tells me the amount to make a difference would have to be huge, sustained, and then cut off, to have an effect.

Regarding exercise and cuts - I mountain bike, work on construction and have had HUGE cuts which needed stitches. In all cases, I did not bleed out any differently than before I was on Warfarin. The only side affect is more bruises than I used to get.

One area you should be careful, not to miss more that 2 consecutive doses. Best Wishes for the surgery!

-Steve

 

[Seanskx]

Hi guys. Thanks for all your personal experience replied. Appreciated it a lot!
However my surgery have been postpone to the next following week and my doctor have introduce me a new method of valve replacement with call "Percutaneous aortic valve replacement which also call as transcatheter aortic valve implantation. Although this method still consider quite new in the medical book, however my doctor said perhaps when after I choose tissue valve and 7-10years later, more data from this method will be collected. So when after my tissues valve finished its life span, the next surgery can choose this new method without reopen my heart.
I'm really lost which to choose from right now. Choosing tissues valve will avoid warfrine and also possible to go for another surgery without open my heart. Any advise out here?

 

[clay_from_nj]

Hi Seanskx,
I wouldn't absolutely count on the percutaneous valve (TAVI or TAVR) just yet, so if you go for tissue, I would still consider that another OHS is a real possibility. You may want to go mechanical if you definitely don't want another surgery, or tissue if you definitely don't want to go on warfarin. I waited too long to get my AVR and wound up suffering heart failure when I finally did it. My choice of mechanical valve was not to avoid another surgery so much as to avoid the decline leading up to it, which I'm sure not everyone would go through. It seems that the choice is often based on what you want most to avoid in the future, which is impossible to accurately predict, which makes it so difficult.

 

[enkaynj]

Sean,
I debated quite a bit before choosing my valve. I am not very organized and am sloppy with taking medicines; only reason I went w tissue. But I am much older than you are; the next time they need to put a new valve in, I am hoping it can be done via catheter w/o breaking my bone,
My 2 cents.
Hope everything goes well and wish you a speedy recovery so you can keep enjoying life.

 

[Seanskx]

Hi Seanskx,
I wouldn't absolutely count on the percutaneous valve (TAVI or TAVR) just yet, so if you go for tissue, I would still consider that another OHS is a real possibility. You may want to go mechanical if you definitely don't want another surgery, or tissue if you definitely don't want to go on warfarin. I waited too long to get my AVR and wound up suffering heart failure when I finally did it. My choice of mechanical valve was not to avoid another surgery so much as to avoid the decline leading up to it, which I'm sure not everyone would go through. It seems that the choice is often based on what you want most to avoid in the future, which is impossible to accurately predict, which makes it so difficult.

Thanks Clay for your replied.
I also do not wish to let them open my chest once again if i choose tissue valve. However with this new method (TAVI/TAVR), we could avoid chest breaking surgery if our tissue valve fail us perhaps 7-10years down the road. I am agree that this method consider new under medical history. However if let say my tissue valve given me another 10year of life span and by the time after 10year, TAVI will have more than 15year of history and will becoming more stable with higher successful rate data (yes i know is a gamble)

I have decided mechanical valve before my surgery postpone to next following week. However after my introduce by my surgeon on TAVI, I start to reconsider.
Why:
I NO to tissue valve at first due to multiple time of Heart surgery after my tissue valve tear off later part. However since TAVI is introduce, By choosing tissue valve now, all i need to face in the future is just another surgery without reopen my chest. Nothing else, and i shall gain back all my quality of life.

However if i choose mechanical valve, Longer life span but with all the precaution in life due to warfarin. I have to worry so many things such as, Bleeding, bruise, Dental, INR ration and weekly/monthly INR monitoring, forgetful to take medicine daily, monitoring on diet, Stroke, lifestyle restriction.

True to see that i'm starting to get more bias towards tissue valve over here. But at the age of 27, What happen if my first tissue valve dont last me that long. Perhaps less than 4years. Then all things which i said earlier changed. Because i know even thou there is TAVI out there, but how many time can we depend on it. Since it just keep repeating replacing tissue valve. Really headache right now and i will to remake my decision before next following week

Sean

 

[neil]

Tough decision,i cant tell you which to go with thats YOUR choice, both are good choices remember that, we can only give you our opinions on here and the choice rests with you, which ever you choose will be the right choice, good luck and am sure you will do fine,

 

[Seanskx]

Tough decision,i cant tell you which to go with thats YOUR choice, both are good choices remember that, we can only give you our opinions on here and the choice rests with you, which ever you choose will be the right choice, good luck and am sure you will do fine,

Totally agree with you. I met up with my surgeon today but yet cant decide which valve to use.
After listening to my surgeon, he will advise everyone start to implant tissue valve due to (Vit-K). Currently research Vit-K2 is so good and important which allow us to prolong our life. Just like how Vit-C is so impt later follow by Vit-D currently. However warfarin dont allow mech valve patient to intake Vit-K (perhaps yes, combine of warfarin and Vit-K together by doing the dosage adjustment). Plus he mentioned TAVI getting better and the result seem good. Although the last death result from TAVI is from a old lady, but young patient shouldn't face the problem.
He told me due to my heart condition, the hole is bigger and which required bigger tissue valve. So since using bigger tissue valve, The problem for tissue valve to wear and tear will be longer. Perhaps will last longer (thou i know tissue valve last around 5-10years). And he did add on saying maybe after 10years after my first tissue valve dysfunction. 10year later TAVI valve may last even longer since there are so many companies out there keep doing the research.

However things which stop me from getting tissue valve and trying TAVI is due to the cost fee. (Poor people better dont fall sick, that's what we say when you are living in the high standard of living such as singapore) The Cost fee for each TAVI valve cost SGD40K (the price eventually "May" drop because this method are use on risker patient at first. But if demand increase, they may reduce down the price) without including the surgery fee. Plus the % of death doing TAVI is around 5%. I did question my surgeon what about the % of death if multiple doing TAVI over and over again. (Let's do some maths, Im only 27, first tissue valve 10year. I will be 37. Continue add one for each TAVI valve, I will need around 3-4more time of TAVI. This only applied if each tissue valve last me 10year at least!

There are so many uncertainty over using Tissue valve life span, TAVI life span, TAVI cost, %risk of death. everything is just assume and assume.

As for warfarin. I know there are people over here taking warfarin to as long as almost 40year ++. But my surgeon said there are risk of 2-4% of warfarin patient to face risk of bleeding or stroke. So he do a maths for me. Lets say i will stay alive for the next 40year. it will be around 80-160% of risk i will face bleeding or stroke in the future.

Seriously! TOUGH DECISION! What will be your call if you were me?

 

[Agian]

Hi Sean. Firstly, the 5% mortality for TAVI would HAVE to refer to high risk patients, because they're the only people they've done it on. As for the accumulative risk of bleed or stroke on Warfarin, I don't think it works that way. I doubt it's 80 - 160%. We would hope a young man like you would live longer than just 40 years. You're assuming that there will not be other developments within 40 years, besides TAVI. Rather than going valve in valve in valve etc, I think they'll probably be using valves they can take out and replace, like a tyre. They may invent a better alternative to Warfarin. They may even invent a mechanical valve that allows a layer of cells to grow over it, eliminating the need for anticoagulant.

 

[Seanskx]

Hi Sean. Firstly, the 5% mortality for TAVI would HAVE to refer to high risk patients, because they're the only people they've done it on. As for the accumulative risk of bleed or stroke on Warfarin, I don't think it works that way. I doubt it's 80 - 160%. We would hope a young man like you would live longer than just 40 years. You're assuming that there will not be other developments within 40 years, besides TAVI. Rather than going valve in valve in valve etc, I think they'll probably be using valves they can take out and replace, like a tyre. They may invent a better alternative to Warfarin. They may even invent a mechanical valve that allows a layer of cells to grow over it, eliminating the need for anticoagulant.

Hi Agian. I can't bet my life on the future medical research. Invent a better alternative to warfarin and a new type of mechanical valve is really still far away from us to know. the % calculation is like 80-160% of chance i will suffer over the period of 40years. Seriously i left 5days to make my decision! What should i do!

 

[Agian]

I agree. I'm an obsessional person, so if I went tissue I'd be checking up for new developments daily... Waiting impatiently. But that's ME. At your age, most doctors would suggest mechanical. Bloody hell Sean, making this decision is anxiety-provoking. What do your parents think?

 

[Seanskx]

Doctors only suggest but cant decide. Some said tissue due to warfarin. some say Mechanical due to longer life span. My parents say all depend on me! After all im the one living with my own life. I wish to go for tissue valve, but the medical fee isnt cheap later part. Can't imagine every 7years i gotta save up additional 40k to replace my tissue valve! FML

 

[dick0236]

......... everything is just assume and assume.

As for warfarin. I know there are people over here taking warfarin to as long as almost 40year ++. But my surgeon said there are risk of 2-4% of warfarin patient to face risk of bleeding or stroke. So he do a maths for me. Lets say i will stay alive for the next 40year. it will be around 80-160% of risk i will face bleeding or stroke in the future.

Seriously! TOUGH DECISION! What will be your call if you were me?

The risk of "bleeding/stroke" may be 2%, or 4%(?) per year but the risks do not add yearly. If the risk is 2%/yr today, it will be 2%/yr ten years from now...or forty years from now(maybe a little higher due to age). BTW, I don't think it is possible to have probability of 160% since 100% represents "certainty".....but it has been a long, long time since I studied statistics(LOL).

In my case it looks like this....

year probability of stroke

1973 2%
1974 100%*
1975 2%

2014 2%

*my stroke was due to my own mismanagement of INR and I learned, the hard way, to follow a few simple rules.....and have had NO problems since.

Using this "additive reasoning", you'd have to apply this logic to the risk of a possible tissue valve re-op as well.....?% first year, ?% second year, ??% tenth year, ???% twentieth year. While mechanical valve ACT carries a RISK of stroke.....tissue valve longevity carries a CERTAINTY of re-op for young people. It is your call.

There are several very good mathematical explanations of this in some old threads. If your interested, look them up.

 

[Seanskx]

The risk of "bleeding/stroke" may be 2%, or 4%(?) per year but the risks do not add yearly. If the risk is 2%/yr today, it will be 2%/yr ten years from now...or forty years from now(maybe a little higher due to age). BTW, I don't think it is possible to have probability of 160% since 100% represents "certainty".....but it has been a long, long time since I studied statistics(LOL).

In my case it looks like this....

year probability of stroke

1973 2%
1974 100%*
1975 2%

2014 2%

*my stroke was due to my own mismanagement of INR and I learned, the hard way, to follow a few simple rules.....and have had NO problems since.

Using this "additive reasoning", you'd have to apply this logic to the mortality risk of a possible tissue valve re-op as well.....?% first year, ?% second year, ??% tenth year, ???% twentieth year. While mechanical valve ACT carries a RISK of stroke.....tissue valve longevity carries a CERTAINTY of re-op for young people. It is your call.

There are several very good mathematical explanations of this in some old threads. If your interested, look them up.

Thanks for you replied dick0236.
I will say there are risk for re-op if i go with tissue valve. However with the new method (TAVI), the risk only 5% around each time i go for my tissue valve replacement.
I have been reading alot of old threads regards on TAVI, Tissue, Mech with the data but still cant decide which to go for.
Why? Because there are people saying with the latest 3rd gen tissue valve which able to last longer. (but how true the data on a age of 27 like me). If only i can ensure that the tissue valve able to last me at least 10-15yrs. I will definitely go with tissue valve. However i just worry it may not make it more than 5-7years.

IF today im going for mech valve. I guess there is no other reason than due to the cost price. (which i believe i will regret years down the road)