Basic Side Effect Question

[JeffRamsey]

Hey,

Brand new to this forum, really glad I've found it. Have a really basic question about the side effects of coumadin/warfarin, but I didn't see it anywhere. If I missed it, please direct me.

I'm 35 and I recently discovered, after a month of lightheadedness and shortness of breath, that I have a bicuspid aortic valve and I have severe aortic regurgitation. After having consulted with 4 different cardiologists at Duke I've decided to get it fixed.

I'm debating between the Ross and the mechanical valve. I want the Ross but am worried about the risk of re-operation. The mechanical is attractive because they can apparently do it using minimally invasive techniques and there's a much lower risk of re-operation, but I'm pretty concerned about being on coumadin.

My question is about the side effects people have experienced on blood thinners. I mostly hear that you get used to it, but some people recount anxiety, depression, getting cold very easily, and sleeplessness as side effects. That doesn't sound like fun.

Thanks for any information you can give me.

 

[Blanche]

Welcome, Jeff. I know you will find answers to many questions here. There are alot of misconceptions about anticoagulation. I hope that the following link will provide a starting place for you. I'm sure others will be along soon to add their information and expertise.

http://www.valvereplacement.com/forums/showthread.php?t=17116
Kind regards,
Blanche

 

[Natanni]

That is my 34 year old hubby on the right on his new snowmobile, 3 months post AVR with a mechanical valve! He spent entire weekends snowmobiling with our 14 year old son, anticoagulated. Was he cold? No more than our son

You decision is a big one, and you found an excellent resource with people here who live life on coumadin and will give you honest answers. I am the spouse, and I have my own opinions. I worry alot more now than I did before, but my husband is extremely active in ATVs, motorcycles, hunting and snowmobiling. If you ask him, his surgery and medication has not changed his life other than home testing once a week. He is lucky in that his INR has been very stable (KNOCK ON WOOD!). Nathan has no problems with depression, being cold, anxiety...... I have heard of people being cold, but I have also heard of being cold after open heart surgery non- anticoagulated. Something to keep in mind is the future-if you ever need any major invasive surgical procedure, you will require either a hospital stay with an alternative anticogulation method like Heparin or Lovenox while you go off your Coumadin/Warfarin. Side effects to worry about are a higher risk of a major bleed/stroke. My husband has beer or wine a couple times a week. He eats salads, cabbage, soy, you name it. I worry more about hidden vitamin K in things, or antibiotics not carefully RX'd.

My husband was hoping to have his BAV repaired, and declined a tissue valve in hopes (nothing is ever certain) of avoiding a future surgery in his life. You will find many here to help you with Ross info, tissues valves and mechanicals. Good luck and ask questions!

 

[catwoman]

Jeff:

Would be hard to say that a person's depression, anxiety and sleeplessness are directly related to just Coumadin/warfarin. After all, nearly everyone has some depression post-OHS of any kind. Ditto with some anxiety and definitely with sleeplessness!!!!!!!!!!
Feeling cold? Sure, I went through that, but now I'm not so sure it's because of warfarin. I lost weight post-op, gained a little back, and then 2 years ago joined Weight Watchers. I weighed 199 the day before my MVR and I generally weigh about 150 today (148.2 this morning). I do get cold more now, but I chalk that up to having a thinner layer of natural insulation, a.k.a. fat.
I eat what I want. I had a big salad for lunch today with leftover grilled salmon. At Dallas-Fort Worth Airport, I had some (awful) shrimp tempura with some broccoli. Double doses of vitamin K today!!!

I haven't had problems staying in range. I don't get out & exercise -- too hot this summer -- but I'll bet if I was on a walking regimen, my INR would definitely be on the low side since exercise increases metabolism of warfarin. I understand the drug, and that puts me ahead of many in the medical field with impressive initials after their name.

 

[Hank]

Welcome and side effects of coumadin

Welcome and side effects of coumadin

Hello Jeff,

Welcome to the site! This is the best place in the world for information about valve surgery.

And I am not just saying that because I created the place.

I have been taking coumadin for over 7 years now and I feel very confident in telling you that there is only one side effect to taking coumadin. That would be the increased time that it takes your blood to clot.

But the beautiful thing is, the one side effect is the reason we take the stuff!

As long as your INR (blood clotting time) is monitored, then coumadin is really one of the safest drugs ever. It has been in use for many many years and if there were other side effects, we would know about it by now.

Anyway, visit the PTINR section of the site for all the information you could possibly need. Here is the link http://www.ptinr.com/data/pages/default.aspx
.

Then when you have questions about what you have read on PTINR.com, come back here to the forum to ask us..

Cool system eh?

And welcome..

 

[ALCapshaw2]

What? No one has mentioned Al Lodwick's wetsite www.warfarinfo.com?

Al is a registered pharmacist and certified anticoagulation (something) who is also director of his own anticoagulation clinic in Pueblo, CO. He monitors the Anti-coagulation Forum on VR.com and frequently puts his 2 cents worth in at NO charge.

'AL Capshaw'

 

[Guest]

First lose the "blood thinner" term. You want thin blood - drinks lots of water.

Warfarin slows the ability to form a clot it does not change the viscosity of the blood.

 

[denobobeno]

Good question

Good question

I too am wondering the side effects maybe some of you have experienced. I'm typing this at 3:00 in the morning! I can't get to sleep most nights until late! I don't sleep during the day either. Thanks for asking this question I know it will help others too.
Deana

 

[charly]

Side effects of warfarin

Side effects of warfarin

Hey there,

I'm also new to this site. I'm on warfarin as a result of having received my
2nd artificial aortic valve ( a carbomedics.) [I had a bicuspid aortic valve.]

My experience with the anticoagulant has been positive. It's mostly a pill you take and forget about. Occasionally I do feel a little cold , but it's certainly not an overwhelming symptom; just a mild nuisance that happens infrequently.
And, of course, you have to keep track of your greens, etc., but just in a general way.

But... my uncle recently received a tissue valve from a doctor in North Carolina who claimed that even at my uncle's age (late/mid 60's,) he should avoid coumadin/warfarin because "it's linked to liver and kidney disease."

I was shocked that my uncle was led to a tissue valve, but of course, it's his decision. However, I'm outraged by his doctor's claims of liver and kidney problems caused by coumadin if that's merely a statement of his opinion. I've searched quite a bit to find studies that would back up his claims, but to date, I haven't found anything. Has anyone here heard this before?

By the way... are there any members who have the CarboMedics valve? I'd love to hear from you. So far, I love it... it's incredibly quiet.

best, Charly

 

[geebee]

Welcome Charly,

There are a few members who have a Carbometrics valve. If you are looking for some feedback, it would help for you to start a new thread referring to that issue and you would end up with more replies.
You are right, coumadin is a relatively easy drug with very few side effects. I have had none connected to it except for perhaps the questionable connection to osteoporosis in long term usage. I think I would have ended up with bone loss even without coumadin but I will never know for sure. I do not care as coumadin has kept me alive for over 26 years.

I agree that your uncle should probably have seriously considered a mechanical. Unless, of course, his doctors don't expect him to live more than another 15 years or so. I would hate to see him facing an OHS at 75 or 80. I suppose he will do what is necessary now but he might have had other options if he had a more well informed surgeon.

Someday we all hope coumadin will be better understood in the medical community. Thank God for VR.com.

 

[Natanni]

My husband has a Carbomedics mechanical valve. Another member posted a link to the Carbomedics website that allowed you to hear all the different brands of valves clicking. It was very interesting! If you post a thread like Gina mentioned, maybe in Heart forum, you will find alot of Carbomedics

I hope Al will comment on this Liver/Kidney disease topic. I had not heard this before.

Ann

 

[Philip]

Jeff: I have been taking Coumadin less than 4 months and have found that it has not had as much impact on my active lifestyle as I expected. I have had a few bruises and one cut while water sking that were non-events and one HARD impact to my upper leg that resulted in no more bruising than I would have expected pre-Coumadin. I am too embarrassed to tell how that happened. The only side effect for me is positive, no clots.

Charly: I have a Carbomedics aortic valve that I am very pleased with although I am not sure I would describe it as quite. I hear it in all quite environments and some that are not so quite. Other than my wife only 2 others have noticed and one of those was a PA who was aware of the valve. The valve noise does not bother me at all; I find the click to be very comforting.
Philip

 

[charly]

Thanks....

Thanks....

This is an incredible website - I'm so glad I found it. It's very comforting to know that there is a place to turn for advice and support, since we don't always get the whole picture from the medical community.

Hope I didn't get off subject too much asking for other Carbomedics owners!

Also, I look forward to hearing more about the alleged side effects of Coumadin I mentioned. (Do you guys think it would be appropriate for me to contact this surgeon to ask for substantiation of his statement that coumadin causes liver/kidney damage?)

best, C

 

[geebee]

This is an incredible website - I'm so glad I found it. It's very comforting to know that there is a place to turn for advice and support, since we don't always get the whole picture from the medical community.

Hope I didn't get off subject too much asking for other Carbomedics owners!

Also, I look forward to hearing more about the alleged side effects of Coumadin I mentioned. (Do you guys think it would be appropriate for me to contact this surgeon to ask for substantiation of his statement that coumadin causes liver/kidney damage?)

best, C

Charly,
I think we could all benefit from any information the surgeon might have to substantiate his claim. I know I would like to see the source material to find out if I have managed to avoid this damage or still have it coming.

 

[Guest]

Surgeons cut.

Most are not interested in long-term medications. This is probably something that he overheard when he was in medical school.

We have the person who has been on warfarin longer than anyone else in the world. There are several others among the longest. While this is not proof, at least we know that it does not happen to everyone.

 

[charly]

Surgeons cut.

Most are not interested in long-term medications. This is probably something that he overheard when he was in medical school.

We have the person who has been on warfarin longer than anyone else in the world. There are several others among the longest. While this is not proof, at least we know that it does not happen to everyone.

According to my uncle, this surgeon (and I won't name him here..) is steering all patients, no matter what age or occupation, etc., towards tissue valves based on some studies (and he might have conducted these himself) showing that coumadin causes liver and kidney failure. I guess it's posssible that my uncle misunderstood, but I don't see how, since that was the reason given for his surgeon choosing tissue valves for all his patients.

Personally, I am not afraid to take warfarin. I'm more afraid of someone twisting the facts, as it seems this doctor might be doing, to suit his purposes. My uncle and aunt are now intimating that my mechanical valve is just as destined to "wear out" as a tissue valve, because that's what this surgeon told them.

 

[Guest]

Sounds like one of the I am God types.

He could not possibly see enough patiens in one career to make this conclusion. Especially in the face of more than 50 years of opposing data on warfarin. Remember that President Eisenhower got warfarin in 1955.

 

[davidfortune]

Charly,

I've been sitting here trying to think of an analogy to demonstrate how ridiculous the statement is that a mech valve will reach its useful end of life due to wear as quickly as a tissue valve, but I came up empty. Ridiculous, completely contrary to every study and all the empirical evidence. I think you would be hard pressed to find a reputable doctor (either surgeon or cardiologist) to back that claim. The only exception may be that they "think/hope" the Ross procedure will provide a lifetime aortic valve without the need for anticoagulation.

Silly. That's my response to the implication that a reputable mechanical valve will have similar structural lifespan as the "typical" tissue valve.

 

[Guest]

I have heard from some insiders (not valve company people) that tests are showing that the new tissue valves are lasting as long as mechanical ones. These are not the ones that are currently on the market but those in development. The valve companies cannot say this because it is not approved by the FDA.

 

[temp69]

re: coumadin. I've been on it now only a few (7) weeks and don't really feel any side effects except for easy bruising, which sucks. I got a bruise on my arm where an inept nurse drew blood. So I'm going for the finger pricking INR checking system from now on.

Valve selection is a tough, tough choice. Having to worry about what you eat, or if you can ski, having to schlep to the Dr. to have blood work done every two weeks isn't all that attractive. BUT...this is in contrast to, if you're young enough, having to go back in and have OHS a second time to put another valve in.

So...maybe the new tissue valves will last 20-30 years, maybe not. The doctors and cardiologists I talked to (4) told me that they last 10-15 years. But that's the old ones, the new ones last longer.

Either way, you'll still be ALIVE! And that's the great thing. Lots and lots of people are on coumadin for years and it's not big deal for them. I'm hoping it won't be for me once I get settled into a more stable routine with a portable tester. Good luck!