New to list, questions on coumadin

[stevewbme]

Hi,
I am new to this list. I had my aortic valve replaced in Jan 99' using the Ross Procedure. The RP is where the persons pulmonic valve is used to replace the failed aortic valve and the pulmonic valve is repalced with a cadaver valve. I just found out that my aortic valve is failing.

My doctors are recomending a mechanical valve replacement. I had feared being coumadized which is why I had the RP. It now seems that I will have to have a mech valve and the coumadin.

I would appreciate any input/facts or opinions on my concerns.

I have lived an "active" lifestyle, sailing and biking. Will I have to give up these things? Will I have to stop biking because of risk of injury? I just started to get into doing trails this spring and have really enjoyed them.

I get really bad nosebleeds (my whole life - I'm, 48), will this put me at risk for bleeding to death or hospital visits?

I am an 'almost' vegetarian , I eat fish. How critical is it to follow a particular diet?

Any info/help is greatly apreciated.

Regards,
STeve

 

[Marty]

New to anticoagulants

New to anticoagulants

Steve, the short answer is "no big deal" I'd get started by hitting
Al Lodwick's web site warfarinfo.com. Then get in touch with Robthatsme and Gina very astute contributors to this website. I also suggest home monitoring and a little later you might consider self management if your doctor approves. Dupont.com has all sorts of info and will send you charts and record books.
roche and protime( a sponsor of this website) will send you technical info on their handy dandy little monitors. Don't worry and don't hurry and stop to smell the flowers!

 

[Herb M]

I have been on Coumadin for 13 years. I do not find it much of a problem with diets or activites. The activities you listed should not be of any great concern. I occassionally get nose bleeds, mostly because of the very dry air in Colorado. I usually just stuff a tissue up my nostril and it stops fairly quickly. The only concern is keeping your INR within an acceptable. range. If you radically vary your diet, this may be reflected in an increase or decrease in your INR. Your doctor will adjust your Coumadin doseage to keep your INR within range.

 

[Sharon]

coumadin and vegetarians

coumadin and vegetarians

Hi Steve,
I used to be completely vegetarian (not vegan - I like pizza too much for that for more than 10 yrs) - over the last year I've again added fish to my diet to placate my husband - I eat a piece of fish a month. I've been on coumadin for almost 5 yrs. The main thing that you have to remember is to eat similar amounts of Vit K rich food each day. Read up on it before you have your surgery and start eating that way - there shouldn't be any problems. If you fall off your bike you're going to bleed more and it will take you a little bit more time to stop bleeding and you may also bruise more. Nose bleeds are usually because of dryness and not too much coumadin. Do go to Al's website and the others mentioned by Marty. Best of luck to you. Is there any chance that your av will stop leaking on its own?
Sharon

 

[Guest]

Thanks for the plug for the website. I had 75,000 visitors last year from 72 countries.

One thing I remind people about bleeding is that you can lose about a quart of blood before getting into real trouble. Imagine spilling a quart of milk or oil. Think about how many Kleenex it would take to clean it up. Nobody is going to sit still and watch that volume of blood run out of themselves without doing something.

I'm not quite so strict with my patients as to say to eat the same amount of vitamin K every day. I say every week. I think people do that very easily - we have our likes and dislikes. I say that if you overdo it at a salad bar, then the next day choose corn or beans for your vegetable and it will all even out. I have even won the dietitians at my hospital over to my way of thinking!!!

Also to allay some of the fears, there will be a new drug on the market to replace warfarin in the next two years. Follow this story by going to Yahoo about once a month and searching for Exanta.

 

[Perrster]

Can it be true?

Can it be true?

Al,

Do you think Exanta is really that close?!

Two years?! YIPPEE!!!!

I will follow the story as you suggested.

Thanks.

 

[Guest]

I have served on a consultant panel for AstraZeneca, the company that is developing it. Things seem to be progressing according to their plans. Actually I'm surprised that it is not already on the market in some European country.

 

[Chris Ramcharan]

Coumadin replacement

Coumadin replacement

I wish the replacement (Exanta) for Coumadin was even sooner than forecast. I can barely keep within the 2.5-3.5 range for Aortic St.Jude valve and this is at a price - gastrointestinal disorders (which the doc thinks is gastroparesis), joint pains and myopathy type symptoms. As soon as I reduce my dosage from the daily 5mg or happen to skip it I get immediate relief. I am a newcommer to the site and would welcome any suggestions or replies from anyone with similar symptoms.
ChrisR.

 

[Guest]

Chris,

I know we have written through my website, but I do not remember if I gave you any of these ideas.
1. You could be reacting to the dye or one of the other "inert" ingredients in warfarin. Try using the 10 mg tablets and splitting them. They are formulated with no dye in them.
2. Try using 1, 2 or 2.5 mg tablets since they are different colors and if it is the dye then you would have different choices.
3. Try different manufacturer's generics. They might have different "inert" ingredients used to make the tablets stick together.
4. The ingredient that is common to almost all oral tablets is lactose. It sticks stuff together very well to form a tablet. If you are lactose intolerant, this could be your problem. Taking a Lactaid tablet before or with the warfarin may help.

Gastroparesis and liver disease are two almost insurmountable problems in dealing with warfarin. Gastroparesis because vitamin K does not get absorbed and liver disease because warfarin does not get metabolized.

If you are truly allergic to the warfarin itself, you may need to have a low molecular weight heparin injection daily.

 

[cookie]

Lactose intolerance

Lactose intolerance

Wow! I never thought about the pills containing lactose! I am lactose intolerant. Ever since my surgery for an anuerysm and aortoc valve replacement 1 1/2 yrs ago it seems that everything has gotten worse. I also have Fybromyalgia. I watch my intake of dairy but could not understand why the cramping and fybro had gotten worse. It was always my understanding that fybro was not a progressive syndrome. Could the Coumadin be the culprit? Interesting! I tried taking Lactaid one time and got the worse case of nausea I've ever had. It seems the only thing that works for me is to take Bentyl and ,sometimes, Antivert for the occasional nausea. I must check into this. Thanks for that bit of info. I don't think I'm allergic to the dye because I've seen an Allergist and had the routine tests run. Any suggestions?

 

[Guest]

It is not just Coumadin, but I would guess that almost every tablet or capsule made contains some lactose. It is the cheapest stuff that causes the ingredients to stick together enough that they can be worked into solid dosage forms. This would include Bentyl, Antivert - almost, if not all, tablets or capsules. You can find out for sure by asking your pharmacist for a package insert. One has to be shipped with every bottle of medications. The alternative is to go to the library and look at the Physician's Desk Reference (PDR). It is nothing more than a collection of all of the package inserts. Therre will be some of this information on websites for specific drugs.

I would be interested to know if you can find ANY that do not contain lactose.

 

[Sharon]

exanta

exanta

Al,
I read about exanta and they specifically said it was only for non-valvular patients' use. Have they started to test it on people like us? That would really be wonderful. Is exanta without side effects or just easier to use?

Cookie,
I too am lactose intolerant and tried the lactaid capsule, it made me feel bloated and I had similar symptoms to drinking a lot of milk. I can eat a little dairy - just not too much.

 

[Guest]

Nothing has been published about valve patients and Exanta. However, there is nothing against it either. Everything that I have seen, has shown that it has been a direct replacement for warfarin.
AstraZeneca just sent me a new slide show on Exanta but I haven't taken the time to review it yet. Right now I am preparing to take the board certification exam for anticoagulation. This requires writing up 75 patient visits, among other things, so I have used every spare moment on this. I'll review the slide show during the coming week and let you know if there is anything new.

 

[McCln]

They are going to test exanta on valve patients. But It did not say when it happen. Just keep hanging in there. They will let us know something when they are through testing.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Guest]

I have done a little checking and found two things.

1. There are a few tablets and capsules which do not have lactose, don't ask which ones, I was just browsing the PDR. They mostly have microcrystalline starch instead.

2. There was nothing in the slide show about valve patients and Exanta. But I'm sure they are considering. I think if they were already testing of of the forum's 302 members would have known about it by now.

 

[Gail in Ca]

If you tend to get nose bleeds then it will be somewhat worse on coumadin.
I have a problem with lots of blood in my nostrils
especially during dry weather. It is very clotted and much more comes out when I blow, kind of gross.
I am getting used to it though.
LOts of red tissues in the wastebasket.
Yukko.
Gail

 

[Guest]

Try a humidifier at least in the bedroom.

Also the is a nasal spray called Ocean that is just mild salt water. Anything which will kepp the membranes moist will help.

Some people have to have the offending blood vessel cauterized.

 

[Nancy]

Joe has a bleeder in his nose and every once in a while he gets the nose bleed from hell. We've come close to going to the ER with it, blood was everywhere, but I did find on the web, the following info. and it saved him several times, especially the part about spraying Afrin on a cotton ball and putting it in his nostril. That worked miraculously. This is from doctorhoffman.com:


"The Medical Consumer's Advocate
--------------------------------------------------------------------------------
Nose Bleed Precautions (Epistaxis)
Douglas Hoffman, M.D., Ph.D., March 1999

Disclaimer: This information is meant to improve the interaction between you and your doctor. It is NOT meant to replace this interaction! There is no substitute for a history and physical examination administered by a competent physician. If you inappropriately use this information to treat yourself, you may be endangering your health.
--------------------------------------------------------------------------------
The most common reasons for nose bleeds are (1) trauma (for example, by picking or rubbing your nose) and (2) excessive dryness (usually due to dry weather) causing "chapping" of the nasal tissues.

Tumors of the nasal cavity and tumors of the sinuses can also cause nose bleeds. Danger signs that suggest the possibility of tumor include:

Nose bleeds which recur over the course of a few months

Nose bleeds associated with any of the following:
loose teeth, numb facial skin, a change in vision, a change in occlusion (the way your teeth meet), or any deformity of the facial contour

If any of these symptoms are present, bring this to your doctor's attention at once!

If a doctor has determined that your nose bleed(s) are due to one of the common benign reasons (trauma or dry weather), you can help prevent further nose bleeds by observing the following precautions:

Needless to say, DON'T PICK YOUR BLOODY NOSE! (Pun intended.)

Do not lift any heavy objects (more than 20 pounds); do not strain or bend over for long periods. Do not strain at bowel movements; take a fiber supplement or a laxative, if necessary.
Do not forcefully blow your nose.

Sneeze with your mouth open (this will reduce the force of the sneeze.)

Keep your nose moist. A salt water solution (Ocean, Ayr or NaSal are easily obtainable brands in the USA) may be sprayed in each nostril every 2 to 3 hours, or as often as necessary.

Consider buying a humidifier for your bedroom, especially if your house is very dry. Use it at night. For additional lubrication, place a small amount of antibiotic ointment (the size of a split pea) into each nostril (before bedtime) and pinch your nose gently to spread the ointment.

If you develop a nose bleed, rest quietly on a couch while applying firm, gentle pressure to your nose. Do this by pinching your nose between your thumb and forefinger. Hold pressure for 5 to 7 minutes. If the bleeding continues, gently blow the clots from your nose, then spray each nostril with Afrin (generic: oxymetazoline) or Neosynephrine (generic: phenylephrine.) Hold pressure again for 5 to 7 minutes. If necessary, you may repeat the spray 15 minutes after the first spray. If the bleeding continues, seek medical attention at once."

 

[RobThatsMe]

Hi Nancy,

Thanks for the tip on nose bleeds. I have not had any major bleeds so far... knock on wood!

But I did copy and save your article to my files that I keep for my personal information relating to my condition.

Thanks again,

Rob

 

[Guest]

To put this in perspective, too, consider this. You can lose about 2 pints of blood before you get into real trouble. Think about spilling a quart of milk or a quart of oil and trying to clean it up with Kleenex. Obviously nobody is going to sit there and watch that much blood run out befoire doing something about it. Bleeding to death from a small cut or nosebleed with warfarin is so rare as to be almost beyond the level of concern.