Coumadin, oh how confussing!!

[Raquel]

My husband had surgery about 7 weeks ago. He had a disected Aorta (9cm), so that was repaired and they replaced his Aortic valve with a mechanical one(he's 33). He has been so VERY careful about the Vitamine K intake and all the other foods(onions, garlic ect.) that he is now getting his blood drawn 1x a week, which is amazing! Our problem is that the drs NEVER went over anything really when it came to the Coumadin. Has anyone else had this problem, also I heard about a new drug thats soon to take the place of the Coumadin. If anyone has Any feed back on taking Coumadin forever it would be great to hear from you. Thanks

 

[Karlynn]

Welcome to our "home" Raquel. You came to the right place. We have a wonderful resident expert on Coumadin (warfarin - generic name) who has his own site with tons and tons of information. www.warfarinfo.com Al's site has just about everything you'd want to know and I would highly recommend going there, as well as purchasing his book on the drug to have on hand.

The key to managing Coumadin, is first and foremost, consistancy. Have your husband be consistant with what he eats. Salads are okay, if he has them regularly. If he love brocolli, he can have that too, in morderation and consistantly. Same with wine and beer. Better one glass a night than 4 or 5 on the weekend.

Many of us have found that we tend to know more about Coumadin than a lot of the doctors we see (before we change them )

 

[Raquel]

Coumadin

Coumadin

Thanks for your reply! I will most surly check out that web site. I only wish my husband would talk to some of you, I think it would help. Do you have any suggestions on how to get him talking. We have 4 children(7 months -12 years old) and he's SOOOOO up-tight with them, all the time!! Thanks again and all the best to you -Raquel

 

[Rich]

Hi Raquel,
Go to that web-site that Karlynn mentioned.
In addition you can talk directly to Al Lodwick who is a member here and runs that web-site. You can 'talk' with Al here, send him a private message if you want or e-mail him. He is an experienced expert on Coumadin.
Personally I have been on the stuff for almost eight years.
I'm surprised the doctor didn't supply any information, they gave me a booklet when I left the hospital and it has been a big help.
You can also go to the Coumadin web-site, I beleive it is www.coumadin.com.
Tell your husband to get involved here, if not for his own sake then for the sake of you and the children.
There is a world of experience here and a whole lot of help.

Rich

 

[SJJ]

Welcome Raquel, so glad you found us. There's a wealth of information regarding coumadin in past threads and posts which you can access by using the search feature and typing in coumadin or warfarin. As an overall resource, however, it doesn't get any better than Al's book and I encourage you to get one. I'm less than 9 weeks out of my surgery so I don't have a lot of experience with coumadin yet, but so far, I've been in range within a couple of weeks of coming home. It certainly means a lot to me that if I have any questions or concerns about it's use, the folks here can provide the answers. There are many who have had years of experience and are more than willing to share their knowledge. Again, we're happy to have you with us.
Sue

 

[Harpoon]

Raquel:

Welcome!


My first suggestion would be just to read around the different forums here.

you guys are past surgery and such so look more at the stuff on Coumadin and the recipes and resource pages. A browsing of the Post-Surgery forum might reveal a few answers for you too here and there.


Everything has back-logs to it and you may want to take the time to sift through stuff.


I've been on Coumadin for just over a year now and I'm testing about once a month. I've been rock steady and stable the whole time with one small exception, when I went off one of my other medications.

I haven't changed much of anything in my diet. I eat salads about 3-4 times a month or so as meals. I have a lot of other veggies, loads of garlic (in fact, I just made a batch of garlic soup the other day) and a lot of the other foods that are listed as vitamin-K rich foods.

The key really is consistancy. Expect that at certain times, like when you change medications or get sick or have a diet change (certain veggies go out of season) that your coumadin might need to be adjusted some, but it's not a certainty.


I'm more concerned about sodium content in my foods than vitamin K.

The less sodium the better, having an occasional veggie lasagna with spinach isn't going to hurt me as much as a large order of fries from the Golden Arches of Cholesterol and Heart Disease...

 

[Ross]

Get him to read the replies to you. He walks the earth amongst others in his position. You have hit the best possible sites to get the answers to your questions on Coumadin and heart surgery for that matter.

First thing is to eat what you like and be consistent in eating the about the same amount of Vit K. Adjust the Coumadin around the diet, not the other way around. Check into Al Lodwicks site and read all you can stand. He is a Professional Pharmacist and Anticoagulation care expert.

Welcome to the forum. Now Mr. talk to us!

PS, when he gets this Coumadin thing straightened around and has a stable INR, they shouldn't be testing him weekly, but monthly. You may also want to check into home testing. It's so much better then getting poked all the time.

 

[JimL]

Welcome, Raquel and Ru!
I read "up-tight" in your post and think depression, which is a very common and a very natural consequence of open heart surgery. What does it all mean? Why did this happen to me? What did I do to bring this on? (That's what I was asking my doctors.) This is a life-changing surgery, especially at a young age, and most of the changes are for the good.
I have found very few people who haven't had this surgery who understand the thoughts I have had; but this site is filled with people who have had the surgery and do understand fully.

 

[catwoman]

Rachel:

I'm ditto-ing what others have said: The key is consistency in diet. We don't mean to eat like a cat or dog, same Purina Cat/Dog Chow every night, same amount, but (approximately) the same amount of vitamin K and other things that affect metabolism of coumadin.
After my surgery, I was started on 2.5mg. It gradually was upped to 4.5. However, I'm a big salad lover and was missing my green stuff. I told my PCP as such and we upped it to 6 and I'm usually around 3.5.

Weekends are difficult for me, because I travel a lot. I am gone probably 30 weekends a year, maybe more (so says my husband!). Last Friday I had a small salad from home w/ Lean Cuisine for lunch. That evening I flew to Colorado Springs for a cat show. The hotel picked me up and by the time I got my cat settled in the room, the restaurant had just closed. I begged them into letting me order in the bar off the restaurant menu. Got grilled salmon, some wonderful grilled veggies (no broccoli) and a nice salad (darker greens than I usually eat).
Sat night my friends & I did Italian. I had grilled tuna w/ some more wonderful grilled veggies (again, no broccoli) and a Caesar salad, which was bigger than the house salad.
Yesterday at lunch I had a small salad. No dinner because of flight time, nothing much @ airport, got home too late.

Rachel, do order Al Lodwick's book from his www.warfarinfo.com site. I got mine over the weekend and looked through it this a.m. I also got the algorithm dosing chart.

 

[Karlynn]

Raquel,
I bet you never realized you'd make so many friends so fast.

Aside from the Coumadin, I want to highlight the mention of depression after open heart surgery. It is SO very common. Much like post partum depression is common after childbirth.

Your body goes through a lot with surgery and has many ways of telling you that it doesn't appreciate being messed with. Depression, fatigue, arrhythmia... it's got a back of tricks and it won't hesitate to use them.

My children were 5 and 7 when I had my valve replaced. There were so many feelings I went through as a parent. Your husband is feeling pretty beat up right now and is probably wondering whether he's going to be able to be the Dad he wants to be. Please assure him that he will!!! But his recovery is going to take time. The 1 year anniversary is usually when people look back and notice "Wow, I really do feel better." But it takes a long time.

 

[Marge]

Raquel, I am glad you came to this board. I discovered it shortly before my valve surgery a couple of months ago & have learned a lot here & gotten a lot of help and reassurance from the people here.

I have to say, I find it amazing that a person could have this sort of surgery, and be released from the hospital, with a prescription for coumadin, without being given quite detailed information about what taking this medication entails. In my case, I had a valve repair & I am only supposed to be on coumadin for three months, but within two days after getting out of the hospital I received in the mail a whole packet of information about the medication, with information about diet, etc., from the Anti-Coagulation Clinic that is managing my coumadin. (Actually warfarin, since I am on the generic.)

I think that after a while your husband will not have to have blood draws quite as often as once a week. Mine were twice a week at first, then once a week, then, as I got in "range," to two weeks, then three. My next blood draw would be a whole month away, but by then I will be off the medication anyway. If I were to be on this medication permanently I would seriously consider getting one of those self-check machines for at-home monitoring. There has been quite a lot of discussion about those on this message board.

What I was told about diet is (and other posters have already said this) is to be as consistent as possible. The clinic said to follow my normal diet and lifestyle -- "don't worry about vitamin K, we will adjust the dosage to YOUR lifestyle rather than vice versa." So I ate my usual amount of green veggies, and had the occasional glass of wine, and within a couple of weeks was in range. One thing to remember, too, is that as your pattern of activity changes (as you become more active once you are past the initial recovery period) your INR may change in response.

 

[Raquel]

Surgery

Surgery

Hello to EVERYONE who replyed!! I thank you all so very much!! I haven't been on in two days b/c my husband went to the surgoen and the Card. and we got some upsetting news. He was told he MUST change carrers!! He is and Oil Burner Tech., he installs water heaters boilers, burners and fixes them as well. They say he can't lift, pull, push or hold ANYthing over 30 pounds forever!!! They said b/c he has Marfans he's at an even greater risk of the other side or even part of the Aorta from tearing. He don't know what to do, I'm a stay at home mom no more!! The drs said that anyone with Marfans has a dilated Aorta and they end up with the tearing of the Aorta(our oldest daughter12, has Marfans and she too has a dilated Aorta, but she is watched every 6 months, not like my husband who stopped his meds and stopped doing to the drs., which is why he has emergency surgery to replace his Aortic Valve and graph his Aorta due to two tears). Just when you think it's slowly getting better it gets worse again. We've been having bad nose bleeds which they say the Coumadin is the cause. I just can't understand all of this at times, but it really is good to know that I can talk to such great people about this who really DO understand. Thank thank you all!!!

 

[Rich]

Raquel,
I'm really sorry to hear that news, it has to be really tough on you.
Can your husband continue to do all the repair work and someone else move the heavy stuff for him?
It doesn't take a genius to move heavy objects but an experienced repairman is a little harder to find.

 

[Karlynn]

Very good point Rich.

Raquel, what is your husband's INR and how frequent are the nose bleeds? Make sure you have a doctor that knows how to manage Coumadin. I have heard of doctors lowering the INR to prevent nose bleeds, but it's more important that your husband stay in theraputic range, which for Aortic valves is 2.0 to 3.0 I think (check warfarinfo.com to be sure). Maybe it's higher because of the Marfans.

It might be that your husband needs to have a vessel in the nose cauterized.

 

[Georgia]

Raquel, welcome.

I ditto everything everyone's said - it sounds to me like your hubby has had a denial and depression problem for quite a while. I hope his doctor was made aware of these issues in your recent visit.

I'm so sorry about the career problem. It's happened to a lot of people. I really think that if he's good at what he did, then he's plenty smart to do equally well at a job that won't be life-threatening for him.

Of course, this just adds to his depression load. Is he a glass-half-empty type to begin with?

Regarding the coumadin: I'm one who had to get a new doc to manage the coumadin, and since I got the new one, I've had great success keeping my inr in (or close to) range. For the first few months it's likely that his dosage will vary (mostly increase) as he increases his exercise. But it probably won't be long now before he will be able to test every 2-3 weeks, then to once a month.

Good luck to both of you. This is a hard thing for your family. Just understand that depression is common after open heart surgery, and there's no shame in getting chemical treatment when needed. His first priority right now is to heal. You guys are in my thoughts and prayers.

 

[Raquel]

Good evening everyone, I hope all is well. I must say, it's amazing how much info you all have shared with me, I love it!!! My husband got is INR today it was 1.8, not GOOD NEWS!! thay want it between 3.0 and 3.5. Last week it was 2.0. He has to take 7.5 of Coumadin for next two days then 5 everyday after until next week. I was sooo scared because they keep saying thAt if your blood is two thin then you can have a stroke or massive heart attack. Has anyone experienced that or is it so rare that it happens? He also started anti depressents yesterday !!. We are hopping his job can give him desk work b/c like Rich says let someone bring they heavy equipment into the houses for him, we then have to worry about bleeding. In his line of work you get MANY brusis and cuts and as you all know thats not good when your one Coumadin!! Like my husband PCP said to me, He wouldn't choose being on Coumadin, b/c it's some nasty stuff but it DOSE save your life. Very tricky. I send all my best to each and everyone of you, you are ALL amazing people with such bravery and courage, I don't know how you do it, just keep up the good work !!
Love to everyone Raquel
PS the picture I enclosed is the kids on Easter. 12, 10, 5 and 8 months

 

[JimL]

Raquel, what lovely children!
There are much nastier medicines than coumadin, some of which I've been on. I take coumadin for life, in other words, I will always take coumadin, and I take it for continued life. I think of the mechanical valve as, in a sense, poison that has been put into me, and coumadin is the antidote; as long as I take th antidote, everything is fine.
If the INR gets too low, there is an increased risk of stroke. If the INR gets too high, there is a slightly increased risk of bleeding. In 29+ months of being on coumadin, I've had neither problem. My current dosage, by the way, is about the same: 7.5 two days a week, and 6 the rest. I get 5s and 6s by mail order, a three-month supply at a time of each, which allows me to adjust my dosage throughout my range.

 

[Karlynn]

Raquel,
Cute kids!!

You really don't need to worry to much about cuts and bruising associated with everyday life. There may be more bruising, but it shouldn't be life threatening. I broke my hand about a month ago and got a really nasty bruise on my palm from it. It turned lovely shades of purple, then green, but other than the look of it, it wasn't a problem.

I'm wondering if they should check the INR in 4 days or so, instead of a week, since it was so low. But try not to worry. We have all been low from time to time, and high from time to time. Al will tell you that as far as bleeding, anything up to 5 really isn't a concern. It's the things like really bad bumps on the head that you want to avoid.

There are many many many myths out there about Coumadin. It is a very serious medication, but one that sustains life, it doesn't take it. I've been on it over 12 years with no big problems. Our Nancy's Joe has been on it 26+ I believe.

I really get upset with doctors that put a patient on it and then scare the life out of them by making it sound like it's going to kill them sooner or later. That's so irresponsible. Not to mention - just not true.

I like the way JimL puts it. The mechanical valve is the annoying thing, the fact that the Coumadin allows us to live with it is a good thing.

 

[Ross]

How are they dosing him? How often are they testing him? They need to be spreading his overall dose over one week and then check it and see where it's at. In other words, if he took 7.5, 7.5, 5, 5, 5, 5, 5 he would be taking 40mg per week divided over 7 days= 5.5 or 6mg per day. I'm thinking someone dosing him doesn't understand Coumadin. There are alot of people who don't.

 

[Guest]

I'm glad you guys aren't charging me for the publicity.