Anyone on blood thinners? (Coumadin/Warfarin)

I'm just wondering if anyone can offer some advice or encouragement about being on blood thinners and our recovery?

I'm 5 1/2 weeks post op now. About once a week I'm having bright red blood. Nothing major, just enough to get my anxiety going. I'm trying to keep my INR around 2.0 - 2.2.

I have the feeling I'll be bleeding longer than the 4-6 weeks that is the norm for most women. Any advice or similar experiences out there?

Thanks so much!

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Originally Posted by willow74 I'm just wondering if anyone can offer some advice or encouragement about being on blood thinners and our recovery? I'm 5 1/2 weeks post op now. About once a week I'm having bright red blood. Nothing major, just enough to get my anxiety going. I'm trying to keep my INR around 2.0 - 2.2. I have the feeling I'll be bleeding longer than the 4-6 weeks that is the norm for most women. Any advice or similar experiences out there? Thanks so much!

Hey Willow! I have been taking Coumadin for about three years now and I hate it - soooo many side effects! Like you I get spontaneous bleeding from time to time. My poor uterus began bleeding because of the Coumadin and just wouldn't stop, so it had to go. Now my nose is trying to do the same thing! (I might just find another use for those leftover tampons... eww!) I take the Coumadin to reduce the number of DVTs I get, though it doesn't prevent them. May I ask why you take it?

The Coumadin shouldn't interfere with your hyster healing or cause any abnormal bleeding if you are keeping your INR around 2. It sounds like you are having similar bleeding to what I had post op. I would have several days with nothing, then I would find a bright red spot on my pad. Not much, but enough to make me think, oh no, not again. I couldn't tell if it was spontaneous or if I had just overexerted myself. I know sneezing fits (allergies) caused some spotting for awhile, but that has resolved itself as well.

My doc assured me it was normal and as long as I wasn't experiencing heavy bleeding I shouldn't be too worried about it. I noticed it slowly dissipated over time. I can't tell you when it completely stopped (still had some when I returned to work at 6 weeks because I remember wearing a minipad as a precaution), but it finally did stop.

I had trouble getting my therapeutic level stable post hyster. I tested daily for the first two weeks, then weekly until my 3 month mark. It took forever to get to 2. I had to take about 14 days of Lovenox injections. Then I went way too high (4.7). It finally stabilized last month and I got to wait 4 whole weeks before I had to test again! Yesterday I was 1.9.

Make sure you are getting your INR checked often throughout your recovery. So many things can affect your levels and you definitely DON'T want any bleeding problems.

Hope this reassures you. If you are unsure about whether your bleeding is related to the Coumadin, call your doctor. It's better to be safe than sorry.

Send me a private message if you want to talk more. I haven't read ANY other posts about others who are Coumadin friends. I don't think there are many of us.

Hello Stonebo!

Thank you so much for replying. I'd like to talk via PM but I don't know how to do it. LOL.

Cheers!
Ginny (Willow)

Ginny, click on my avatar (I don't remember if it's right or left cleck) and scroll to "send private message." You'll be directed to the private message screen. Talk later!

I have been on coumadin since a week after the hysterectomy. I ended up getting a massive pulmonary embolism from the surgery (very very rare). We are still trying to stabilize the INR. I still have spotting at seven weeks post op, which Dr. told me should have ended last week when she cauterized me. I was very nervous about being on coumadin, but I am getting more comfortable with it. I am not a lifer, my anticoagulation tests all came back negative so I only have to be on it six months. I am thankful about that.

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Originally Posted by lissasue I have been on coumadin since a week after the hysterectomy. I ended up getting a massive pulmonary embolism from the surgery (very very rare). We are still trying to stabilize the INR. I still have spotting at seven weeks post op, which Dr. told me should have ended last week when she cauterized me. I was very nervous about being on coumadin, but I am getting more comfortable with it. I am not a lifer, my anticoagulation tests all came back negative so I only have to be on it six months. I am thankful about that.

Lissasue, take very good care of yourself. PEs really take it out of you. I landed in the ICU three years ago with multiple pulmonary embolisms. It was quite a surprise as I had no prewarning symptoms of DVT whatsoever until I suddenly couldn't catch my breath. It really knocked me for a loop!

I worked with a cardiopulmonary physical therapist for about 9 months to rehabilitate my heart and lung capacity. I was frustrated with how long it took me to regain my strength, but my therapist was patient and supportive as I worked with him to develop and implement an exercise program to help me recover. I had massive scarring in the leg veins and minor scarring in my pulmonary arteries which made exercising difficult at first.

My initial therapy on Coumadin was full of side effects because I have to take a rather high dose (7.5 and 10 on alternating days) - bruising, breakthrough bleeding, stomach distress and vomiting, nosebleeds, and muscle aches. I have had 3 more DVT episodes since the initial one, so my doc tells me I will have to take Coumadin for the rest of my life as a precaution. All of my blood tests came back negative as well. This time I am tolerating the Coumadin better. Doc insisted I take the brand name this time instead of the warfarin generic. Don't know if that is exactly the reason I am feeling better or if it's that I'm more tolerant of the side effects now, but hey, whatever it takes!

I couldn't imagine having to deal with that AND a hyster at the same time! Bless your heart (and lungs!) Take it slow and give yourself plenty of time to heal and recover!

Hi Bonnie and Lissasue,

Bonnie, thank you for the PM the other day. I've been kind of busy with doctor appointments and just having trouble with my Fibromyalgia. Yuck.

I'm doing amazingly well with the coumadin levels. I used to be all over the map. Getting tested twice a week. It was really getting me down. My arms look like a heroin addict.... Brutal. But ever since the surgery, my INR has been extremely stable! I'm thrilled! For the first time in 6 years, I can finally go every 2 weeks to get it tested! My doctor is so happy, and so are my arms!! LOL. I'm on 3.5mg for 6 days, and 4mg for 1 day. It's a strange dose, but it keeps me between 2.0-2.5. Just where I need to be. So far so good!

Lissasue, I'm so sorry you had to experience what you did on top of your surgery. That is an awful lot to endure. How are you doing now? Your hyster was 2 days before mine. I'm still spotting a bit too. I'll be 6 weeks on Wednesday. I hope it stops soon. Did you have to get cervical tissue cauterized? Is that why you were spotting? Hope you don't mind me asking.

It's nice to talk to others who are on the same meds as me! Have a nice night!

It has been a crazy seven weeks since all of this began. I have recently caught a virus. The craziest part of all of this, is that it's hard to tell what symptoms are related to what illness. It has also affected my coumadin levels because of the different meds I have had to take. I am on 6mg a day for now. Last week my INR was 3.9 but they thought that was probably from taking Robitussin with the coumadin. My diet has not been good either. I have been unable to eat due to one of the illnesses, I have lost 20lbs.

Willow I had the cauterization because when the Dr. pulled out the lose stitches she could tell that there were still a few open spots which is why she figured I am still bleeding a little. She cauterized them to close up the incision completely.

Willow If you don't mind my asking, why are you on the coumadin and were you on it before the surgery or because of the hysterectomy?

Bonnie are you a lifer because of the DVT's? Do they know why you got them?

Lissasue and Ginny. I guess we've become the "Coumadin Club," haven't we?

Lissa - I don't know why I get DVTs as Doc hasn't found an underlying cause. My dad had one DVT when he was in his 40s and has major coronary artery disease today. It may be an inherited trait, but I don't have the other venous/artery problems that he has. Cholesterol and blood pressure are elevated, but my heart is healthy and stress tests haven't revealed any circulatory problems there.

Doc and GYN conferred and had the good sense to have a filter placed in my inferior vena cava before my hyser to catch clots before they reach my lungs, so when I get DVTs, at least my lungs are safe now. My bleeding uterus was a side effect of the Coumadin - and my hyster was an emergency because of the massive bleeding.

I still get DVTs even though I take Coumadin. Can't imagine how many I'd get without it????? Taking Coumadin protects me from worse case scenarios.

My INR is affected whenever I take cold medication. Anything with an antihistimine makes it soar, so I try to avoid them by choosing a strong decongestant instead. Antibiotics tend to lower my INR so I always have it checked after I complete a round of them. There are websites you can read that list all of the foods that affect INR levels too - Google "Coumadin" and several sites list foods to avoid or limit... boo-hoo, the list includes some of my favorite foods: cranberries and cranberry juice, grapefruit, leafy greens.

Ginny - OUCH and I remember how pretty my arms used to look. I changed primary care docs during my hyster. My new and wonderful doc has a blood tester in his office and it only needs a few drops of blood - it only takes a finger prick now! MUCH MUCH better. I feel like I can wear short sleeves again! And I noticed when I had blood drawn last month for a complete blood workup, the tech found a vein in my arm on his first try!!!! I know my veins are much happier now that they don't get stuck so often!

It IS weird how doctors prescribe this med. It is so specialized and basically just trial-and-error until they find the right dose to maintain your INR. Sometimes my dosage has gotten so complicated that I had to get a daily pill keeper just to keep it straight - "OK. Take 2 days of 10, 1 day of 5, 3 days of 7.5, then repeat!!!!!"

Hey, at least I can laugh and enjoy the absurdity of it all!