Please help me out! :(

[Seanskx]

Hi everyone. I’m new in this forum. I have been reading some of the posts in this forum since 2009 where I had been diagnosed with BAV. Is been almost 4-5year and finally my AVR date is set on 17 Feb 2014 with mechanical valve. By the way I’m from Singapore age 27 this year. I still can’t accept the fact that why am I the one facing all this. Perhaps I’m still living in my denial life. However I guess there are thing which really out of our control.
I need some help to clear my doubt during and after the surgery. I have already Google up all the procedure for this surgery and I’m quite confident in Singapore medical board. But my biggest worries are Anti-Coagulation diet, sports and my future.

1. Regarding about Anti-Coagulation, I know I have to monitor INR. However I stay at the 3rd level house which does not have lift. May I know am I strong enough to climb up the stairs once I’m been discharge from the hospital including how often do I have to check my INR during the starting period? Because I’m afraid it will be tough for me to climb up and down to go clinic for my INR test.
2. I’m an active guy who loves sports! However due to bruise, bleed and internal bleeding, there are some sports and activities we have to avoid. (Example beach volleyball). Is that true? I have read up those post activities in this forum and people are saying just go ahead with whatever you love to. Just caution in everything you do. However I wonder will it be very troublesome if I really get bruise later on? How often do I have to contact my doctor once I got myself a bruise?
3. I study in finance sector and will mostly work in those environment that gonna meet up client in the future. I worry due to my diet (low sat low alcohol etc) will bring a trouble in my career. Taking Anti-Coagulation mean I gotta really study the balance of my diet in the future? Will it be very troublesome? My friends told me I will get use to it years later. But I really just concern about it.
4. I love to travel, I worry due to overseas food is different from my country, I afraid what to eat and not to. I approach my doctor before and he said perhaps after a year later. I just have to visit the clinic once a month to check my INR will do. However I guess that’s only applied to your normal standard diet. But what happen if I’m overseas having different kind of food intake? What should I do?
5. I have already bought those 1week medicine box that remind me to intake my medicine daily. However sometime due to busy working schedule, I’m afraid I may miss out the dose. Will it be a big trouble if I miss my medicine for 1-2day? I did read up people saying just continue my normal dosage on the other day but have to monitor my INR 3days later. Is that true?
6. I plan to go Australia end of year. Which is 8-9month away after surgery. I guess it won’t be a big deal right? However what if I wish to travel 2month later after my surgery for 3Night short trip. Will that be a problem or subjective to my condition?
7. People who are on Anti-Coagulation gotta prepare those bandages whenever they travel due to over bleeding. How long & serious will the bleeding be?
8. For those food diet. Should we very concern on the food intake? I heard that Vit K do affect the Anti-coagulation. Because sometime I will have a good meal with friends and buddy. But I worry I’m not allow to do so.
9. Regarding about INR dosage, I heard my doctor say that the mechanical valve I’m having require low amount of dosage. Perhaps INR between 2-2.5. Lower the INR range = good?


I'm sorry for the long list of questions and thanks everyone for your helping hand.
perhaps till today i still cant accept my fate

Sean

 

[pellicle]

Hi Sean

I guess "welcome" is in order.

I'm on the phone at the moment so I'll be brief (for a change). I too had a BAV surgery at about your age (actually I had what would now be called a repair I guess at 9) and had that valve again replaced at 48.

I think that you should be OK soon after the surgery with getting about. I was back at Uni and riding my motorbike to uni less than 2 months after the operation when I was 28.

I think that volleyball will be fine, and you 'may' bruise more easily but I don't think it will be drastic. I for one have not found any significant issues with warfarin and bruising. There have been some good threads here with graphic pictures recently. I recommend you read them *carefully* and see the discussions.

INR management is not difficult, especially if you self manage and measure weekly. The first few months will be irregular as your body settles down. Mine took a few months. Now its quite regular. Sure it goes up and down a little, but its a range not a thin line

I am sure it will go smoothly and soon you will be on this side of the advice giving


best wishes

 

[big_L]

They'll check you INR every morning before they discharge you. Then you'll go in to your local lab for INR in 2-3 days. Then, they'll decide on the frequency based on the result. You can google and find the 'logic' they use. For me, I was going to the lab every 4-5 days for maybe two weeks. Then once a week or maybe every 10 days. Now, I'm going in every 3 weeks. You can get a home test meter, you can search the forum.

You should be able to handle the stairs after surgery. You won't be running up and down, but take it slow and you should be OK. Will you have someone there with you?

YOu can continue your active lifestyle. You can ask your cardio in the followup about the bruising, but I don't think it's a big concern. If you see something unusual, it's always a good idea to check with your Dr.

Diet has not been a problem for me. Yes - I stay away from the really high vitamin K foods. A month or so after surgery, I starting having a drink or two each evening. This isn't a problem. You should be able to socialize and eat normally. You will need to beg off after a couple of drinks. You want to refrain from drinking sessions/binging. Your clients/coworkers should respect this. Tell them "Doctors orders" or make up some other socially acceptable excuse for the crowd you're with ("I'm still hungover from last night" - might work better with the wild crowd)

Traveling and food. A self test meter would help with this.

I'd suggest that you develop some system to keep up with your meds. Skipping a dose isn't the end of the world, but you need enough discipline to make this a rarity.

I took a trip 7 weeks after surgery and was fine, except I wasn't supposed to lift anything as heavy as my suitcase. Other than that hassle, I was fine.

I've never heard of anyone carrying bandages due to the warfarin. It certainly would help, I suppose. I think it's a bit extreme.

 

[dick0236]

Hi Sean. I had my aortic valve replaced with a mechanical valve when I was 31 and have been on anti-coagulant(warfarin) 46+ years. Warfarin DOES require a dosing regimen in order to prevent clotting issues and to help keep INR stable. You will need to develop a routine of taking your warfarin dosage as prescribed.....after a little while it will become just another daily routine for you. Having a "pill box" to remind you will help a lot. I stress this because the ONLY problem I ever had was when I DID NOT take my pill for a few days....and it was a significant vision problem due to a stroke.

Anti-coagulants have seldom interfered with my lifestyle....and I raised two sons, swam, water skied, did a lot of carpentry work, etc. with little regard to anti-coagulant. I have never needed more than a Band-Aid to stop bleeding except for a couple wounds that required stitches. "Bleeding out", in my experience, has never been a concern for me.....and my clotting time on warfarin is only a few seconds longer than normal. The rumor of bleeding to death due to a cut is silly.....although if a shark takes your leg off you might have a problem whether you are on warfarin or not.

I worked in outside sales for my entire career and never had anti-coagulant interfere socially or in other business dealings with clients.

Foods have never been a problem, I eat what I enjoy when I want to eat it. I do try to keep my vit K(green vegetables) fairly consistent....but I don't let warfarin become "the tail that wags the dog".

Get yourself a home meter after a few months on warfarin and do your own INR self-testing. You will find it very easy and you can travel and test as needed.

BTW, you will find this forum very, very helpful before and after your upcoming surgery.

 

[pellicle]

as Dick has pointed out:

and I raised two sons, swam, water skied, did a lot of carpentry work, etc. with little regard to anti-coagulant...

the most significant side effect of warfarin is enabling you and your new ticker to keep ticking for many many years.

I'd call that a positive side effect ;-)

 

[pellicle]

Hi again

1. Regarding about Anti-Coagulation, I know I have to monitor INR.

correct

However I stay at the 3rd level house which does not have lift. ...

not really related to anticoagulation, but as already I've said and seconded by big L you'll be fine.

However I wonder will it be very troublesome if I really get bruise later on? How often do I have to contact my doctor once I got myself a bruise?

Probably no more troublesome than getting a bruise now is ... do you go to a Dr for that? I don't.

3. . Taking Anti-Coagulation mean I gotta really study the balance of my diet in the future?

not really ... certainly nowhere near as toublesome as if you became diabetic.... No study needed, don't worry if your INR goes out of range on any given week, it will come back in.

Read this post: here for a very detailed examination of one persons INR and their natural (and self correcting) INR.

4. I love to travel, I worry due to overseas food is different from my country,

Me too ... I'm in Finland at the moment and left Australia some months ago. I have been traveling around the country here and planning a few more trips to other European country. My portable INR tester is about the same size as a travel case of CD's (in fact I'm sure its the same case type). Its only 4cm thick and weighs little.

While traveling I eat what I want and drink what I want. It has represented ZERO issues.

But what happen if I’m overseas having different kind of food intake? What should I do?

eat drink and be merry Food is remarkably similar among all human areas. Spices vary a bit but predominately its quite similar. Should represent little or no challenge. The only 'issue food' is anything dark green. There are probably as many green foods in where you live as anywhere else ...

5. I have already bought those 1week medicine box that remind me to intake my medicine daily. However sometime due to busy working schedule, I’m afraid I may miss out the dose. Will it be a big trouble if I miss my medicine for 1-2day? I did read up people saying just continue my normal dosage on the other day but have to monitor my INR 3days later.

I have a alarm reminder programmed on my phone, I slot my time for the late evenings and I remember to take my box with me when I go out. I also leave a bottle of warfarin (not full, just with a few doses worth of pills) in my backpack for "oh ****" moments.

Missing a day now and then will not represent any significant issues. I adopt the strategy of keeping my INR at about 2.6 which means that I can afford to drop a little and still be in range. You can find a what if analysis I've done on this here. My model as it happens is almost identical to the model used by Ola in that above post.

I examined two scenarios:
Missed a dose and do nothing (top graph) and missed a dose "take half with next dose" (bottom)

you can see that both show a return to normal INR within a few days and not falling far out of the INR range at any time. BTW I've found in actual testing (when I've missed a dose) that my ACTUAL INR is somewhere between the predicted INR and the dark blue line of the 3 period moving average of the INR. I know this because I've decided to measure daily during these "missed a dose" events ... just so I can know.

So basically I'm not comfortable that its not a problem and don't sweat it if I miss a dose ... but I aim not to.

I plan to go Australia end of year. Which is 8-9month away after surgery. I guess it won’t be a big deal right?

I'd expect that after 8 months from surgery you'll have almost forgotten it. I was out riding my motorbike with my wife on the back 3 months after my most recent surgery ... and as I stated earlier riding my motorbike to Uni less than 2 months after my surgery when I was 28

feel free to get in touch with me in Oz if you're anywhere near the Gold Coast ... I can have a coffee and we can compare notes on how you're doing.

7. People who are on Anti-Coagulation gotta prepare those bandages whenever they travel due to over bleeding. How long & serious will the bleeding be?

seriously ... I've never ever ever heard of this outside of the ultra elderly ... who have other skin issues complicating it.

8. For those food diet. Should we very concern on the food intake?

I watch what I eat carefully ... so as not to get it onto my shirt or onto the seat. That's about as far as it goes.

This has been my INR for a while

I heard that Vit K do affect the Anti-coagulation. Because sometime I will have a good meal with friends and buddy. But I worry I’m not allow to do so.

it does, but don't worry ... if you eat it ALL THE TIME then you'll simply adjust your dose. If you eat occasionally it won't matter.

simple

9. Regarding about INR dosage, I heard my doctor say that the mechanical valve I’m having require low amount of dosage. Perhaps INR between 2-2.5. Lower the INR range = good?

personally I prefer to stay on the 2.6 side of my range. Its like playing tennis or squash. Stick to the middle of the court and you won't get caught out. Many are comfortable to be at 3. I dont get worried till mine is 3.5 ... my given range was 2.2 ~ 3 You can see where it has been in the above graph.

There are some good reasons to remain above the miniumum too, such as the possibility of thrombus growth. I have read that this is reduced by having a slightly higher INR.


Best Wishes

 

[Seanskx]

Thank you everyone for your kind reply. Sincerely appreciated.

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?

pellicle, thank you very much for those INR measurement chart. May i know how often do you monitor your INR? i saw the different between missed a dose (do nothing) & missed a dose (take half a dose). Seem no different at all. You did mentioned adjust my own dosage, but how do you do it? I mean how do you know what dosage to intake when your INR is high or low. (throu experience or after doctor advise?)

I'm always in the negative side and worry a lot of unforeseen things which may happen to me during the process of surgery or post surgery. Because some people did actually faced a rough time in their recovery period. I guess how positive can i be after knowing i'm going for AVR.

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 doctor told me do not treat myself as abnormal compare to others. I'm just as normal but only to take medication for life plus bleed slightly longer compare to others. But I guess that's the only option he left to bring me back to the positive side.

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?

Thank you once again
sean

 

[clay_from_nj]

Hi sean, and welcome!

I would have to echo what others have said, especially Dick, who has more experience with warfarin than several others of us combined. In my own experience, no lifestyle changes except for the better, as in more exercise, better diet, etc. Bicycle, motorcycle, run, split firewood, lift weights, no worries. (This from someone who, before surgery and unmedicated, couldn't walk more than 50 feet without having to stop and catch my breath due to the heart failure.) Cuts, scrapes, bruises, no different from before. Low salt - that's just healthy for you, helps to prevent high blood pressure, nothing to do with warfarin. My diet is really just trying to eat healthy and I don't really consider the effect on INR. For various reasons I don't self-test (nothing against it and I know it's a good thing and I know that stating it publicly could get me stoned on this forum) and I'm doing just fine. And, I am one of the ones who had a very easy surgery and recovery. I think it mostly depends on your age, you particular cardiac condition, and any other health issues you are also dealing with. I know some people have problems and complications, but that is not the usual; most of us are doing just fine.

 

[Seanskx]

Hi Clay

Thank you for sharing.

I guess the only way for me to put myself on the positive side is to convince myself by taking warfarin do force me to control my healthy diet. After all i guess no matters who you are, everyone do have to watch out their diet to prevent any illness in their later age.
As for no lifestyle changes really hit me. As for my condition, (yes, i do feel chest pain rarely and giddy after lifting weights) but i feel perfectly fine without anythings else. Today I'm "normal" and ask me to go for a surgery I seriously can't accept it. Unless I left no choice today then i left nothing much to complain (but i guess it will be worst by that stage). I pray my surgery and recovery will be same as your. I defer my Uni and push all my life plans way back just for the surgery & I know without this AVR, how far can i actually plan for myself. Sometimes fear are always the one overcome my positive mindset

Sean

 

[dick0236]

Thank you everyone for your kind reply. Sincerely appreciated.

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'm always in the negative side and worry a lot of unforeseen things which may happen to me during the process of surgery or post surgery. Because some people did actually faced a rough time in their recovery period. I guess how positive can i be after knowing i'm going for AVR.

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 doctor told me do not treat myself as abnormal compare to others. I'm just as normal but only to take medication for life plus bleed slightly longer compare to others. But I guess that's the only option he left to bring me back to the positive side.

sean

My docs now work with me when dosing adjustments are warranted because they know I understand the drug and how my activity, diet, etc react with the drug. That was not always the case and they still prefer that I not self-adjust without their input. That's OK with me as they have a fiduciary responsibility since they are the prescribing physician....and in the US some patients, not me, are law suit happy
.
I understand your fear and negative feelings regarding this surgery. The first successful valve surgery was done in 1961.....about six years before mine and believe me, I was scared shitless. That first patient lived twelve years until he died accidently when he fell off a roof while doing some repair. You now have several million successful surgeries and mindboggling technology advancements behind you.......plus indispensable internet forums like VR.org. Fear is good, but keep it in the proper perspective.

A very high INR can cause the bleeding problems you describe....but only if your INR gets way out of range on the high side and strokes can happen if your INR gets way to close to normal. That is why proper management is critical....but not difficult.

I like what your doc said....."do not treat yourself as abnormal compared to others". He is a very wise man.

 

[njean]

Hello Sean and welcome to this forum. You have gotten some excellent advice and I hope that in hearing everyone's helpful information, you feel more comfortable about your upcoming surgery and your lifestyle after.

I too have been on coumadin for 38 years....had a double valve implant in 1975 when I was 24 years old. I've always eaten what I want, led an active lifestyle and have had several operations throughout the years without significant issues with coumadin. Most of the issues were a longer stay in the hospital right after a surgery or procedure because doctors would not release me until I was in range which was usually over 2.3 or so. My normal INR range is 2.5 - 3.5 and I check my INR weekly with my own home monitor.

Also, whenever you have dental cleanings or work, you will have to take antibiotics prior to the procedure to avoid infections that may go into your bloodstream which may infect your mechanical valve.

Like the others said, proper management of anticoagulation is important but not difficult to do and in a short while, taking your daily dose of coumadin/warfarin will become second hand to you.

Wishing you the very best with your upcoming surgery!

 

[pellicle]

Hi

May i ask, do you guys actually live with fear or becoming more precaution in life?

I don't and I don't think any others do post surgery. It seems to be an issue coming into surgery.

Like many things in life once you start to do it and feel successful you'll feel more confident. So what I mean is that after surgery, when you start finding that day in day out its all ok, you'll build confidence that its all ok.



you asked:

May i know how often do you monitor your INR?

I check weekly (on saturday mornings around breakfast (just after it).

I only decide to check more often if I see that my INR is close to the limits of the range. If its close (or above) then I do what I call "ad hoc monitoring" where I sample every 2nd day and watch what happens. So far there have been very few times when it has not just gone back down (or up).

i saw the different between missed a dose (do nothing) & missed a dose (take half a dose). Seem no different at all.

yep, which is in fact consistent with the observation that there are a few 'approaches' which each adherent believes is right. Some say "do nothing" some say "take half as soon as you notice (for instance next morning) and others say "take half with the next dose". Essentially each is right because there is really no difference in results between the methods

You did mentioned adjust my own dosage, but how do you do it? I mean how do you know what dosage to intake when your INR is high or low. (throu experience or after doctor advise?)

well it started from when I left the hospital, initially they were dosing me. Then I attended a clinic where they were dosing me. I started reading what I could and over the course of about 6 months observed what they were doing and what the responce to my INR was.

From there I reasoned (and had read) that consistency is the key factor and that once you knew what the dose was you just kept that up. It is like steering a boat. Once you're out of the harbor in open water you just keep the nose pointed in the right direction. The trick is to not try to steer too obsessively, some drift left and right will be natural and self correct. So I only change my dose on the occasions where something happens (such as I get sick). Then ALWAYS make changes smaller.

If you look at my graph you'll see the relative constancy of dose (and what happened when back in April I moved dose too far).

However what should i do if my INR is not within the range during my overseas trip?

exactly what I do when I'm at home ... wait a while and see. You don't turn blue and burst out bleeding in 2 hours, its not like a SciFi show. If my INR goes higher than (say) 3.5 for 7 days in a row I might consider dropping my dose by a small margin ... like 0.5mg per day.

My pills are 1, 3 and 5 ... you can see that I take a bit over 7mg a day. I do this by breaking pills in half (there is a line on them to assist) and so have a 5 + half a 3 + half a 1 ( = 7mg) daily and because I'm anal break a 1 into 4 bits and spread that across 4 of the 7 days. Many would argue that I could split the 1mg into 2 and just take that across 2 days. ... personally I've found my INR more stable by keeping my dose more stable.

Do you guys actually reduce or increase your own dosage to get back your INR range or wait for doctor advise?

I never even bother a Dr with this and haven't even agreed with them (when they have been involved) for over a year now.

I'm always in the negative side and worry a lot of unforeseen things which may happen to me during the process

life is short, enjoy it. An old saying I keep in mind is that those who live in fear never live.

Because some people did actually faced a rough time in their recovery period. I guess how positive can i be after knowing i'm going for AVR.

much easier than being positive knowing that you'll die ... and you will die without the surgery. The only thing you have to fear is fear itself.

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?

well how do you expect you'll get high up in INR unless you don't look after yourself? Are you a regular drunk or a heroin user? Do you loose track of time and wake up days later in an alley?

If you answered yes to those questions then you may be at risk of losing control of your INR ... otherwise for normal people the answer is "it doesn't happen".

My doctor told me do not treat myself as abnormal compare to others

correct ....

I'm just as normal but only to take medication for life plus bleed slightly longer compare to others.

well I've met "normal people" and I don't normally like them or get on well with them. The amount you'll bleed more is barely noticeable. The Drs often just repeat words that they read and have no personal experience with. As every person here has said the difference is minor if indeed even noticeable.

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?

salt ... never heard that before ... and I love salt. Cranberry ... well how many jars are you intending to swallow in a hit?

Its all fine ... seriously ...

 

[pellicle]

That first patient lived twelve years until he died accidently when he fell off a roof while doing some repair.

really!? now that's just plain bad luck!

As I always say, life is more dangerous than heart surgery ... and I ought to know. Just some of my stupid stuff in my younger daze

this one looks less impressive, but EVERY part was dented or scraped as I rolled it good when I "woke up" after falling asleep on the way home from a dance.

only me in the car ...

never did get shots of the bike crashes ...

 

[Seanskx]

Thanks everyone for your prompt reply.

I guess soon or later i will learn the tactic to adjust my own dosage. Perhaps is tough in the beginning.
By the way pellicle, i consider myself having a healthy lifestyle in life. I dont smoke and rarely drink. I dislike alcohol and the taste of beer. (nv slip beer more than twice).
So topic back on diet. Shall i say im just as normal to resume my normal diet. Dont have to avoid those canned food and salted item? Just remain everything will do and adjust warfarin on my daily diet?
And everytime after a big meal (with Vit K or alcohol) i just wait for 2 day and check back my INR to see what the range before deciding to adjust the dosage?

Sean

 

[pellicle]

Have you started warfarin yet?

 

[Seanskx]

Have you started warfarin yet?

Not yet. after my surgery which is on 17Feb.

 

[pellicle]

Well, now that you have read so much to support at it will be all right, that all foods will be fine, that life will go on...

Why not just try to rake it easy and focus on take-outs.

Everything in life has take-outs. Most people who go through things like this discover that what they were afraid of before was un-real. There really was no need for fear. That what they imagined was important was not.

Few get to die and live again. When I had my surgery at 28 I awoke feeling like I had been given a new life. For before the surgery I could feel the changes, I could feel that my heart was getting congested. Soon after I woke in hospital I realised that I had a new life. Few get at chance.

Take it to live free of anxiety.

February is a good month.

 

[njean]

Reducing your salt intake is a good idea being that reduced sodium is heart healthy.

I am on a sodium reduced diet but I have never been the kind that salts my food once it's on the table. I cook my food using a minimal amount of salt and buy sodium reduced canned or packaged foods where available. Keep in mind that fast food is cooked with a lot of sodium!

Thought to keep in mind: "we need to take better care of our mended hearts because we're the lucky ones....those of us that have made it through this ordeal and we don't want to have to go through it again if we can avoid it!"

Take care & wishing you the best!

 

[Seanskx]

Thank you pellicle & njean.

I guess im pretty much settle down and willing to face the surgery. Pray that the pain isn't that worst.
I will be back to update my condition once after I'm recover.

Thanks everyone once again

 

[neil]

glad your settling down sean, you will do just fine, and the pain is not as bad as you imagine, i was suprised at the lack of pain after the op, onwards and upwards sean