Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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Came off Warfarin today - emotional roller coaster

mickfinn
mickfinn
So I came off Warfarin today after a full year of therapy after my DVT and extensive PEs last August. My doctor (who is wonderful) was excited and confident but I had a hard time speaking at all. I knew if I said much i would probably turn into a puddle right there in the exam room. I'm definitely anxious about stopping something I've done every day for a year, the thing that helped me get better and acted as a mental safety net. I ended up falling apart as soon as I left the office, crying my whole way home, but I think its really half anxiety/fear and half relief. Even though my life will never be "the same," now I can go back to playing hockey, not thinking at all about my diet or drinking (other than just staying healthy) and I won't have a daily reminder that I'm in treatment. I'm hoping I can stay focused on the positives, get through this first patch without losing it, and not drive myself and my doctor totally nuts with every ache and pain.

I still have a residual leg pain from my clots and suffer from back/shoulder pain that I'm of course always worried is new PEs so I'm hoping as some have said that the aches and pains dial back a bit now that I'm off Warfarin. I'll be going on a baby aspirin every day and hopefully that will provide me some peace of mind. I've switched to a stand up desk at work which helps keep me mobile and helps my back quite a bit too. I'm young, I drink tons of water, I'm thin and fit, I don't smoke, no more BC pills, i wear my compression stockings everynday...I don't know what else I can do! Hopefully that puts the odds in my favor.

Any success stories and positive light from others who have come off are very much welcome. Thanks everyone for listening.
rmb
rmb
Well I think most people who have success with coming off warfarin, (and most do; otherwise doctors would keep everyone on the stuff long term) aren't going to be hanging around this site. So if you don't hear from a lot of people on that don't take it as discouragement.

I think it's FANTASTIC you're coming off warfarin, but it's totally normal to have mixed feelings about it and to have some anxiety. All you can do is do what you're doing, and be mindful without making yourself obsessed and crazy, which honestly, is it's own type of sickness, you know what I mean. Living afraid is like living in a cage.

I think too, the more days you're off of warfarin, the longer you're off warfarin, your confidence will grow, and you won't think about it as much because you'll be distracted by other things.

It's ok to lose it. It's an emotional time, for sure because it's sort of like saying good bye to a part of your life in a way. I think you sound incredibly grounded and positive.

Best of luck to you!
deleted_user
deleted_user
great news coming off warfarin been off it since May, now back running with the running club and ready to race in the spring not had any problems, its great having my life back.

Good luck.
TossNTurn
TossNTurn
Take a deep breath ... it's gonna be GREAT!

Congrats on getting off the warfarin! Definitely a good step in getting your life back.
deleted_user
deleted_user
Well, you did better than I did! I DID turn into a puddle right there in my doctor's office the day I stopped warfarin! That was 5 weeks ago, and I still have my rough days. In so many ways I feel physically better without the warfarin, but mentally, that's another story. I should get some of the results of my blood work back tomorrow, so I'm hoping that will provide at least a little relief. I've been taking a heavy-duty omega supplement, but am considering talking to my Dr. about baby asprin instead. I know the omegas are probably better for me, but UGH!! I can't swallow pills, and even the vegan omegas somehow taste like fish when broken open. I'll also go see my naturopath again once all my results are in, assuming they come back ok. If somethig comes back positive and I have to go back on warfarin, no point in using natural preventatives. I see my doctor tomorrow and am REALLY hoping she'll tell me the chest pain I've had the last few days is a result of all the smoke from fires around here. Hang in there! I'm sure it will get easier with time, I just tend to freak myself out and take longer than most people to get there! :)
evelov
evelov
I'm at 7 1/2 weeks off now! It was very anxiety provoking the first week, by the second week, I was much more settled. I do take an aspirin a day, wear my compression hose pretty religiously, hydrate all the time and keep moving around. I have some post thrombotic syndrome in my leg, so the pain keeps my attention. But I feel so much better physically and have so much more energy, it is startling. My husband shared my progress with my primary doctor's partner, who actually admitted me into the hospital and he stated that he has many patients who report the improvement once off the warfarin/Coumadin. I don't like that my mind constantly checks out every twinge/ache/pain, but can't ignore doing it, since I was very delayed in seeking help for my leg pain and chest pain! I am a little afraid of myself, quite honestly, and my power of denial! Good luck! Try to enjoy all the positives!
mickfinn
mickfinn
Thank you guys for your stories and support! It really does make me feel less crazy. And good point rmb, I hope I'm soon forgetting enough that I disappear! I've done pretty well these first 5 days in my opinion but now that I know the warfarin is likely completely out of my system I'm having more nervous moments. Today I went rollerblading and now my calf and knee is sore on the leg where my dvt was so I'm thinking about it and looking to see if it's bigger etc. Its so annoying to be going about your day and happy and then have a pain and everything comes to a halt. How do we tell the difference?

One day at a time i guess.
deleted_user
deleted_user
At about 5 days off warfarin I started having more anxiety too! I would wake up at night and check to make sure my legs weren't swelling, just like I did for the first month after my PE. All of this being completely ridiculous since I had NO swelling in either of my legs when I had my DVT/PE. To make me sound even more neurotic (if possible!) I would get up while I was awake and walk around the living room a couple times before going back to bed, just to be sure I was keeping my blood moving. When I confessed to my Dr. I was doing this, she laughed and told me to knock it off! It's been a few weeks now since my last midnight laps of the living room! Now if I could just get someone to come take all the smoke out of the air, I might just be able to breathe well enough that I could go most of a day without a complete freak-out!
deleted_user
deleted_user
It's great news but I totally understand what you are feeling. I was told just 3 days ago that I can stop warfarin 6 months after bi-lateral PEs. I have the same anxiety but took my doctors advice and am seeing a therapist who deals with anxiety. I also have the shoulder and back pains - they landed me in the ED twice since my original clots since I thought for sure they were back, even on warfarin. I think you need to take it one day at a time, I know it's easier said than done but that is how I'm trying to get through it.

Good luck!
rmb
rmb
Seeing a therapist is one of the best things I ever did for myself after my PE. I highly recommend it to people who are struggling with anxiety after a PE. People don't just have to accept the anxiety as par for the course. You can do something about it. Good for you!
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