Worried About Coumadin

[pgammo]

Hello all,

I had finally been at ease with my upcoming surgery, until I began deciding on a valve. I'm only 25, so I think the mechanical valve would be the only logical choice, but the anticoagulants really frighten me. I suffer from anxiety, so naturally, a million things have been running through my mind.

How hard is the INR to manage? How much of your day does it take?
I've seen some scary stories regarding people that have hit an INR of 8. What can happen?
Will I bleed internally if I fall or bump my head on something?
What happens if your INR is too low for a couple of months? I'm assuming it takes a few months to get into range.
I see that most of you test your INR once a month. What if it reads low? Do you up your dose and test a month later? No damage can be done in the meantime?
I have sensitive gums and they bleed when I brush. Will this be a problem?
I have horrible seasonal allergies. Will I most likely suffer nose bleeds?
Since I am young and have a faster metabolism, will I be required to take a higher dosage of coumadin per day? What is too high?
Is a tissue valve a better option for me?

I've read the sticky's on the anticoagulants, but I just wanted to get some of YOUR opinions and experiences. I really and truly DON'T understand how to manage the INR and regulate the milligrams that I will be taking in.

Thanks guys! And please bear with my hypochondria.

 

[Madsometimes]

I have had my mechanical valve for almost 6 months.

It took about three months for me to get in range, and during that time I was being tested weekly at the anticoag clinic. That was time consuming, parking was difficult and expensive and there was a lot of waiting around. When I moved onto self testing, my management of my ACT transformed. Testing takes 10 minutes, and I usually test weekly or fortnightly although the clinic that does my dosing only requires monthly.

My INR has never been higher than 3.0, but it had fallen low in the early days. I was offered bridging injections when it dropped to 1.4. Normally, if you test out of range, you go back to weekly testing until things stabilise. I take a beta blocker, but have not needed any additional medicines yet, but I'm sure I will at some point.

I don't know about bleeding gums and nosebleeds. I have avoided these. I'm 39, so older than you, and my dose is 9-10 mg warfarin per day. That is a little higher than average, but my INR dictates that is the dose I need.

 

[Bill B]

How hard is the INR to manage? How much of your day does it take? It's been a once a month test for me for over 2 years. Although I got into the therapeutic range before I left the hospital, there were some changes in the first 3-4 months, then stable for a year, then 1 change, now stable for the last 2 years. I get the test in the same week period once each month and it takes me about an hour to drive to the lab, get the test and go back home. I'm very statisfied with using a lab blood draw rather than home testing. You will see others here who are much more complulsive about this and do more frequent testing. There's no evidence that improves things. I am highly trained in pharmacology and feel very comfortable with my approach to warfarin.
I've seen some scary stories regarding people that have hit an INR of 8. What can happen?That's pretty rare. Of course, at that level you could have big problems. If that happened, you would probably get a dose of IV vitamin K and be watched VERY closely until back in-range.
Will I bleed internally if I fall or bump my head on something?Well, no doubt being anticoagulated adds some risk to this kind of thing. Falling or bumping you head unless high impact force, is not something I would worry about. I do everything I did before, including riding motorcyles and race cars at very high speed, with appropriate safety gear.
What happens if your INR is too low for a couple of months? I'm assuming it takes a few months to get into range.Getting into range should be faster than that. You are on heparin in the hospital until there is something resembling a therapeutic effect from warfarin. It may take several more weeks to get things perfectly stable.
I see that most of you test your INR once a month. What if it reads low? Do you up your dose and test a month later? No damage can be done in the meantime? Certainly there is some statistical increased risk if the level is below the therapeutic range. Mine has never been more than 0.2 low, and that only once, 0.1 low another time. My cardiologist's staff and I discussed what to do. If there was no external reason identified for this, we upped the dose 10-20% and checked in a week. In the few times I have had to do this, I was in range on recheck. In the last 2 years I haven't moved more than a few 10ths from the middle of the range. Some people have more trouble with instability and there are approaches to manage this.
I have sensitive gums and they bleed when I brush. Will this be a problem? I had beleeding gums for 25 years every time I brushed. Sometimes it got better, sometimes it came back. It is a sign of gingivitis. You need to work with you dentist and dental hygenist to try to resolve this. Strangely enough, mine went away almost completely after surgery, during which I got several days of broad spectrum antibiotics. Gingivitis is an infection, so I'm thinking the antibiotics helped. I still get some bleeding when I go in for teeth cleaning every 6 months, but I don't think it is any more than before warfarin. You know, I should tell you that warfarin does NOT dramatically affect bleeding time from superficial external wounds. If you look up the standard test for bleeing time called the Ivy bleeding time test, it is NOT affected by warfarin. The biggest factor in external bleeding is PLATELETS, not clotting factors, and warfarin does not affect platelets (aspirin does).
I have horrible seasonal allergies. Will I most likely suffer nose bleeds?When my INR was near the top end of the range a few times, I did get some blood tinging of nose tissue. Very little - just a tinge.
Since I am young and have a faster metabolism, will I be required to take a higher dosage of coumadin per day? What is too high?Dose is totally individual and has nothing to do with age or level of activity. Running around as an active youth may burn calories in your muscles, but the liver enzymes that metabolize warfarin and most other drugs are unaffected by this. I see confusion about this spread here, that exercise increases your "metabolism". Maybe in your muscles, but not drug metabolism.
Is a tissue valve a better option for me?The BIG question. Many factors to consider, warfarin being just one of them. There is a certainty you would need that tissue valve replaced probably several times. On the other side, although mechanical valves have lifetime durability, there is some risk, low as it may be, that the valve could need to be repalced as well. We could go around on this issue for weeks, trying to weigh all the factors and make a "scientific" determination. If you want to try to do this, keep accumulating information and perspectives and see which in the end makes the most sense to you. I was on the fence, but I was much closer to the standard cut-off age for tissue versus mechanical (65). That has been clouded in recent times by many surgeons who have been suggesting tissue valves in just about anybody, and some claims that newer tissue valves have improved prepration that makes them more durable. I am personally skeptical of that, but that's just me.

 

[D.C.]

I have a mechanical valve for almost 4 years. Dr. wanted me to have it even at 58. I was OK with that because my father has had one since 1985. I had trouble getting evened out with dosage because the people I was dealing with had NO idea what they were doing. That problem was solved at about 6 weeks. That is what I get for living in the sticks. Now am regulated by Dr in another city and test at home for the last 6 months. Love it.

I take 7.5 daily but it has varied some. INR has never been above 4.5 then just skipped 2 days and then an adjustment.

Have fallen a few times and had a few bruises. Fell on the stairs yesterday and no marks so far. I find I bleed a little longer and a little easier than before but not a big amount.

Being low does bother me because I had a TIA 2 weeks after surgery(people watching me had not idea)(fixed as noted above).
If low I was tested again in 3-4 days. I like to be in the upper half of my 2.5 to 3.5 range. Feel real comfortable around 3.1-3.2. Even around 4 does not scare me. But am more careful.

I had a nose bleed problem because I was also taking a standard 325 aspirin daily. After about 4 weeks I had big nose bleeds. Stopped aspirin and after a few days problem solved. Have not had one since. WILL NOT take aspirin again!!

I don't worry about the dosage they tell me to take. Just eat what I want on a regular basis and dose to that. Have been eating more greens the last few months and I think it has been more stable. Again on a regular basis.

Which valve you get is between you and your Doctor. I did not want to go thru that again. But that is just me. My Doctor does not like to use tissue on people younger that 65. That was AOK with me.

Hope this helps answer some questions. I am sure some others will also tell you there ideas.

 

[dick0236]

How hard is the INR to manage? How much of your day does it take?
I've seen some scary stories regarding people that have hit an INR of 8. What can happen?
Will I bleed internally if I fall or bump my head on something?
What happens if your INR is too low for a couple of months? I'm assuming it takes a few months to get into range.
I see that most of you test your INR once a month. What if it reads low? Do you up your dose and test a month later? No damage can be done in the meantime?
I have sensitive gums and they bleed when I brush. Will this be a problem?
I have horrible seasonal allergies. Will I most likely suffer nose bleeds?
Since I am young and have a faster metabolism, will I be required to take a higher dosage of coumadin per day? What is too high?
Is a tissue valve a better option for me?

Thanks guys! And please bear with my hypochondria.

INR is not difficult to manage for most people, although it may take a little time to develop a workable regimen. It takes no more time than taking any of my other pills. I load a seven day pill box once per week with my Rx drugs and take them all when I wake up each day.
An INR of 8 would be scary. I have never had an INR more than 5(once or twice in 45 years)...and I think that was an error reading. A 5 would require additional attention to bring it back to my range of 2.5-3.5.
I can't begin to count the number of falls I've had with no problem. Although head bumps should be avoided, they will probably occur from time to time.
It may, or may not, take time to get you in range. Your docs will make sure you are protected during thiat time. You are getting an ON-X valve which allows for a lower INR.
Your testing protocol is up to you. At first, you will test once per week or so. Once you become stable, you will test between once per week up to once per month(I have tested monthly most of my life). If your INR gets out of range, you will test more frequently 'till you get back in range.
Bleeding gums could be annoying. Ask your dentist about gum disease and get a softer toothbrush.
Nosebleeds have been a problem for me over the years. Use a nasal wash to keep nose from drying out.
You probably will requre a higher dose if you exercise a lot. I was on 10mg/day when I was young and have declined as I aged to my current 5mg/day. There is no standard warfarin dose....it takes what it takes.
The choice of valves is your personal decision. Both valves have plusses and both have minuses. I am very comfortable with my valve, and if I made the decision again, at age 31, I would get a mechanical valve again.
Good luck with your upcoming surgery.

 

[Superman]

I've been on coumadin for nearly 22 years. Started about 7 years younger than you are now (turned 18 in the hospital after my 1st AVR).

I'm one bit of anecdotal evidence that mechanical noes no guarantee against re-op. My second AVR was almost 19 years later due to an aortic aneurysm. I still stayed with mechanical, because of the low risk of re-op (since my aorta is now a dacron graft, I figure what else can go wrong? - don't answer that).

I'm one who has had my INR go above 8 a couple times. Just skipped doses and tested frequently to get back into range. No hospitalization or shots required. One time I learned that cranberry juice dramatically increases my INR. Blood in urine tipped me off (very dark brown - TMI?). I suppose that's been my one give up in managing my INR. No more cranberry binges. I still have it, just not a glass or two a day.

I home test weekly now (requirement of testing company), but before that I'd hit the lab on the way to work once in a while.

It's really no more inconvenient than taking a daily multi-vitamin. There has to be a certain awareness when taking coumadin, but not a pre-occupation. You do just live your life like anyone else. Other than taking a pill once a day - I really don't think about it.

Also - consistency is key. The labs / hospitals typically push for evening dosing. I'm sure there is a reason, but it has never worked for me. Maybe in a typical older patient who's settled into a daily routine, it does. But being as young as I was and as busy with my kids as I am now - I'm far more likely to forget an evening dose or just not be home at the time that I should be taking it. I've taken my dose first thing in the morning ever since I started. My clinic will still call and say, "For this evenings dose, go ahead and change ...." assuming I take it in the evening. When out of range, I have to remind them every time that I took that days dose already.

 

[pgammo]

Wow! Thanks for the thorough answers, guys. I really appreciate it.

 

[Ovie]

Wow, are you my doppelgänger?

pgammo, I just turned 26 on April 27. But my surgery and everything all happened when I was 25. Like you I have not just regular allergies, but horrific allergies. I saw my family doctor and said he's the worst he's seen in quite sometime. I also suffer from anxiety, and extreme panic attacks. I'm on medication to help manage them, but as I type this, I just got over a not so fun panic attack. It seems we have a lot in common.

I had an aortic valve replacement on February. 23 of this year. I went mechanical and will have been on coumadine for 3 months this Thursday. As youve read, people have been on it almost as long as we've been alive. It has its drawbacks. It took Hockey away from me, it has made me cautious. I have found myself worrying about my coumadine levels, but unless you really go nuts, and don't see your doctor for months, than yeah it'll be a problem.

Coumadine I think actually has less side effects than a lot of my other meds. I'm on singular to help me. Rather easier and you would not believe he list of side effects. I've had to stop it twice due to issues. My point being, if smart, and have it monitored twice to once a month, it's nothing other than taking a pill at the same time, everyday, for the rest of your life.

Anyways, it's nice to see younger people asking away. Sad that you're here, but for your situation..you've come to the right place.

 

[Jkm7]

The biggest difficulties with coumadin do not usually come from daily dosing and consistent testing but from when the patient has the need for other medical treatments/surgeries which may involve bleeding.

Sadly, too many medical professionals are ill educated as to how to manage a coumadin taking patient when they have a colonoscopy, or a dental procedure which could involve bleeding or any other surgery etc

Bridging and holding doses and getting back in range can often be an issue when dealing with dentists and doctors who are not well versed in good coumadin management. It is definitely in the patient's best interest to be as educated as possible about ACT in order to protect themselves and know when what a doctor or dentist orders does not sound reasonable to them. It is not that doctor who could suffer the stroke or severe bleeding but the patient and patient needs to know what is reasonable IMO

 

[njean]

Dear Pgammo,

If you're worried about "coumadin" please set that worry aside! I can tell you from experience, (been on coumadin for 37 yrs.) that should be the least of your concerns.

I have had so many falls, accidents, surgeries, etc., throughout my life and I haven't bled to death yet!!! Using good judgement and educating yourself about coumadin is important but not difficult to do. There are a lot of people out there that will scare the bejeezers out of you by telling you how evil or dangerous the drug is. That's sheer nonsense and they have no idea what they are talking about!

Taking coumadin does not mean that you will have to "walk on eggshells" from now on....not at all! Like I said, educating yourself about it and looking for a lab or doctor that knows how to manage it is the key. In time, you will know exactly what dosages you need to take to keep it in check!

Wishing you the best of luck!

 

[neil]

hi and welcome aboard, glad your getting some good info above, although bill to say like you did that its a certainty you will need several re ops on a tissue is way way over the top, theres no guanantee on any valves unfortunatley mech or tissue, anyway which ever you choose is way better than the valve you have now,

 

[Bill B]

hi and welcome aboard, glad your getting some good info above, although bill to say like you did that its a certainty you will need several re ops on a tissue is way way over the top, theres no guanantee on any valves unfortunatley mech or tissue, anyway which ever you choose is way better than the valve you have now,

I did try to balance that by saying mechanical valve can need replacement too. At his age, a tissue valve will definitely need repalcement. The newer tissue valves with claimed 20 year longevity don't achieve that in people his age. There are so many aspects to this controversy; so many unknowns or largely unknowns. Even with replacement being likely, MANY surgeons argue that in their experience replacement is no more risky than initial surgery, whereas warfarin becomes more risky as you reach geriatric years, therefore tissue is the way to go. You can beat this around endlessly from all different angles and I don't fault anyone choosing tissue even if I didn't. In fact all I was trying to do was say this question is difficult to resolve.

 

[neil]

we dont know how long the new tissue valves will last as theres no data on them, but yes bill i agree we can go round and round and beat ourselves up about it all,the good thing is we have a choice,whichever you go with is the best choice for you,so bill whos round is it? by that i mean drinks lol

 

[carolinemc]

It does not take long for coumadin to balance in your sysgtems. As for the bleeding issues, if you bleed more than normal, then get worried. Usually the bleeding issues are usually if you cut yourself more often than not. Seasonal allergies will not affect the nosed unless it is enviromentally, extremly dry. On times of tresting, you test more when it is low and the dosage is done according to the low reading, high reading, normal reading. You just relax and everything will fall into place. Just enjoy life as it comes. You will be fine. I've had mine since I was 38, so you will be okay. Hugs for today.

 

[pgammo]

Thank you all for the words of comfort. I really appreciate it!

 

[MarkU]

Hello all,

I had finally been at ease with my upcoming surgery, until I began deciding on a valve. I'm only 25, so I think the mechanical valve would be the only logical choice, but the anticoagulants really frighten me. I suffer from anxiety, so naturally, a million things have been running through my mind.

How hard is the INR to manage? Not hard. Consistency in diet & lifestyle are the biggest factors
How much of your day does it take? I go to the lab to get tested every six weeks.I've seen some scary stories regarding people that have hit an INR of 8. What can happen? If you are being consistent with your activity and diet, and getting tested regularly, then I'd say there's little likelihood of ever getting to an INR of 8. the only time I've heard of that happening was with an elderly patient at my lab who mistakenly took her weekly dose on a daily basis for a couple of weeks. They put her in the hospital until they got her back in theraputic range.[/I]
Will I bleed internally if I fall or bump my head on something? Possibly
What happens if your INR is too low for a couple of months? I'm assuming it takes a few months to get into range.
I see that most of you test your INR once a month. If you're managing your INR properly, it shouldn't be low for that long. If you're out of range, you should be testing more frequently until you are back into range. It takes about three days to metabolize Coumadin, so that would typically be the minimum test interval.[/I]
What if it reads low? Do you up your dose and test a month later? See previous answer; you would test more frequently until you're back in range
No damage can be done in the meantime? You have an increased risk of clotting. I'm always more nervous about being low and having an increased risk of a stroke rather than being too high and bleeding more.I have sensitive gums and they bleed when I brush. Will this be a problem? More of an inconvenience than a problem. Very few people bleed to death after brushing their teeth.I have horrible seasonal allergies. Will I most likely suffer nose bleeds? I've never had a problem with that.Since I am young and have a faster metabolism, will I be required to take a higher dosage of coumadin per day? What is too high? It's a very individualistic thing. That's why you get tested on a regular basis.
Is a tissue valve a better option for me? You're the only one who can answer that question. Do your research and understand all the issues. Don't let anyone dictate to you. I got a mechanical valve at age 47, and haven't looked back, but that's me. I lead a very active lifestyle and had been fortunate that my Coumadin has been relatively easy to manage. The biggest influence on my decision was to minimize the need for future surgeries, but again, that was my decision. You need to do what you feel is best for you. Either way, any decision that keeps you alive and healthy is a good one.I've read the sticky's on the anticoagulants, but I just wanted to get some of YOUR opinions and experiences. I really and truly DON'T understand how to manage the INR and regulate the milligrams that I will be taking in. It's relatively straight forward once you get in range as long as you maintain some consistency in your diet and lifestyle. I've taken 5md daily for most of the last 11-1/2 years.Thanks guys! And please bear with my hypochondria.

Best of luck to you.
Mark

 

[VegasBAV]

The gingivitis also puts you at risk for endocarditis if bacteria from your mouth gets into your bloodstream. I got endocarditis from mouth bacteria and my gums don't even bleed. Endocarditis is an infection of your heart valve (or the replacement valve you receive). It often leads to needing the valve replaced again. You should try to fix the bleeding gums as soon as possible.