Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hello everyone -
So I'm just having a rough patch and thought I would write a post. Short background - I took a 3-4 hour car trip three weeks ago. I stopped every hour and got out of the car, wore my compression stockings, when we got to our destination walked A LOT.
The clinic nurse has put me on home weekly INR monitoring and has told me that I can ease up on my greens restrictions. So I have been eating more salads, broccoli, and a little bit of spinach (but it is in hummus not just straight up spinach, although I did have an omlette with spinach in it but I did try to pick around it as best as I could). I also had a glass of wine last week and started back on my omega-3 capsules.
Last Thursday I missed a dose of my Coumadin but increased the dose for four days by 1 mg. On Tuesday I checked my INR and it was low at 1.8. Called the clinic and they upped the dosage for two days this week and said to recheck in one week.
Well now I am worried that I am having another PE. Why? Because I have intermittent chest pain (something I did have initially after my hospital stay), and I am getting a little dizzy (could it be from the increased Coumadin dose I don't know); so between the car trip, now INR, more greens, etc I have all but convinced myself that I have another PE.
What set me up for the first one was I drove from Detroit to Chicago and back in two days, then three days later drove from Detroit to Kalamazoo (without much stopping as I'm a load and go type of traveler) and an unknown gene mutation, along with a sedentary job and being a tad bit overweight. I should also note that I had no leg symptoms. I did ignore my shortness of breath and dizzy spells until one knocked me out and I ended up in the ER....I now know I was having warning signs but ignored them!
I have been doing everything exactly as I thought I should for the last six months - getting up every 1-2 hours from my desk and walking around, drinking TONS of water, I have lost about 15 pounds, and I'm TRYING to exercise, watching what I eat, blah, blah, blah.
So... questions:
1) Does anyone else get dizzy on warfarin?
2) Does anyone else go for weeks feeling great and then feel like crap?
3) Do I need to see a therapist to work through all the anxiety that I seem to be giving myself?
4) Is there anyone out there that has suffered with just ONE PE event and went on to live a "normal" life?
5) Those of you that have had more than one - how far apart were they?
6) Are there others out there that live with the constant worry of this happening to them again?
Thank you for listening to me whine about this and thank you for any suggestions or words of encouragement you may have!
Lastly - anyone know of a support group in the Detroit area?
Thanks again!! hugs to everyone :)
So I'm just having a rough patch and thought I would write a post. Short background - I took a 3-4 hour car trip three weeks ago. I stopped every hour and got out of the car, wore my compression stockings, when we got to our destination walked A LOT.
The clinic nurse has put me on home weekly INR monitoring and has told me that I can ease up on my greens restrictions. So I have been eating more salads, broccoli, and a little bit of spinach (but it is in hummus not just straight up spinach, although I did have an omlette with spinach in it but I did try to pick around it as best as I could). I also had a glass of wine last week and started back on my omega-3 capsules.
Last Thursday I missed a dose of my Coumadin but increased the dose for four days by 1 mg. On Tuesday I checked my INR and it was low at 1.8. Called the clinic and they upped the dosage for two days this week and said to recheck in one week.
Well now I am worried that I am having another PE. Why? Because I have intermittent chest pain (something I did have initially after my hospital stay), and I am getting a little dizzy (could it be from the increased Coumadin dose I don't know); so between the car trip, now INR, more greens, etc I have all but convinced myself that I have another PE.
What set me up for the first one was I drove from Detroit to Chicago and back in two days, then three days later drove from Detroit to Kalamazoo (without much stopping as I'm a load and go type of traveler) and an unknown gene mutation, along with a sedentary job and being a tad bit overweight. I should also note that I had no leg symptoms. I did ignore my shortness of breath and dizzy spells until one knocked me out and I ended up in the ER....I now know I was having warning signs but ignored them!
I have been doing everything exactly as I thought I should for the last six months - getting up every 1-2 hours from my desk and walking around, drinking TONS of water, I have lost about 15 pounds, and I'm TRYING to exercise, watching what I eat, blah, blah, blah.
So... questions:
1) Does anyone else get dizzy on warfarin?
2) Does anyone else go for weeks feeling great and then feel like crap?
3) Do I need to see a therapist to work through all the anxiety that I seem to be giving myself?
4) Is there anyone out there that has suffered with just ONE PE event and went on to live a "normal" life?
5) Those of you that have had more than one - how far apart were they?
6) Are there others out there that live with the constant worry of this happening to them again?
Thank you for listening to me whine about this and thank you for any suggestions or words of encouragement you may have!
Lastly - anyone know of a support group in the Detroit area?
Thanks again!! hugs to everyone :)
Jill, your concerns are really normal, and sound to me a lot like what many people here go through, so you're not even unusually stressed or anything, although some people have felt much better once they've had some counseling.
I did feel more light-headed and dizzy when I was on warfarin. People have different reactions to it. I don't know for certain it was the medication causing it, it could just have been that I had also improved physically and was breathing better by the time I went off warfarin, and the medication really had nothing to do with it.
I had up and down periods all the time, especialy earlier in recovery when I hadn't learned yet how to pace myself. Life was a bit of a rollercoaster of feeling good and hoping all the pain and SOB was behind me, only to come crashing down again later. That gets better as you continue recovering.
Lots of people have just one PE event and go on to be fine afterward. I have been a member here for years and seen droves of people who come on here, really scared just like you, and in several months they're doing better and we never see them again. Occasionally someone will pop in and say hello and that they're doing so well and talk about the things they've accomplished since, so there's all the reason in the world to believe you'll fully recover unless your doctors have said different.
I had a second episode of clotting which came exactly two years after my first one. Good news was I recognized the feeling very early on, so I got started in treatment right away.
I think most of us don't ever completely leave behind the experience and the truth is that even once we're better and off warfarin, we should be somewhat vigilant about reducing our risk and paying attention to symptoms, but the anxiety and stress does also diminish over time. And being vigilant kind of becomes second nature and you don't have to try so hard at it.
Even at 1.8, your INR isn't too low, and it's unlikely you would have gotten new clots. But as always, if it's concerning you then it's best to be checked by the doctor. Let him decide if anything needs to be checked further. Also, I'm not surprised with the drop in your INR, since you've obviously been told to restrict greens, and now you're being told you can start including them again. That's why I have a kind of moral objection to doctors who handle warfarin patients that way - I believe a person should eat from the beginning however they are used to eating, and have the doctor adjust the dose of warfarin accordingly, in the beginning, rather than dealing with this several months down the road. It's just silly. Not that I blame you with that, you're just following the instructions your doctor gave. But the situation really could have been avoided.
Hang in there, it's a long road but things will improve for you!
In any event thanks for the words of encouragement - they help a lot! :)
(1) Yes, but it wasn't the warfarin. I wasn't staying hydrated or getting enough electrylytes. Add Gatorade and/or bananas into your diet and see if it helps.
(2) Yes. Mostly during the first year of recovery, but even now sometimes I get exhausted and wonder if it has something to do with my lungs.
(3) Maybe. If you think it'll be helpful, then it might be helpful. I got a lot out of therapy after my PEs. Be forewarned though, that finding a therapist that you "click" with might take a few tries.
(4) I've only had one PE (but had two DVTs prior) and I consider my life pretty normal at this point. Don't know if that counts! But yeah, ShilosMommy is right about how many folks are only on the boards for six months and then disappear cause they're back to life and never think about all this again.
(5) Haven't had more than one PE. My clotting events were 03/05 (blamed on BC), 02/09 (blamed on progesterin-only BC), and 01/10 (no given cause).
(6) I was totally wrapped up in the fear and anxiety for the first year or so. Even now (2.5 years out), it can still pop up after exercising or with random aches and pains. Time really does help with all this.
Best wishes! Hang in there!