Hi there, as far as I've been told (although they r unsure if my multiple emboli were caused by DVT), but to avoid future clots they've suggested getting up every hour during the day even if its just walking to the bathroom or kitchen.

Hydration is important. Maybe a goal for u could b to get up every hour go to the kitchen and drink a glass of water. I also suffer depression and find exercise helps but can't at the moment. My dr's want me to move as much as possible without getting my heart rate over 120bpm (which isn't hard because my heart and lungs r still quite affected). I've got a polar heart rate monitor that I wear all day and my goal is to walk as much as possible - just casual stroll- without getting my HR high. As soon as it gets high I slow down or sit/lay for a while. At least mentally it helps me by doing something positive. I still feel exhausted easily so I'm pushing myself but within the limits of what I've been told. Feel like I'm achieving some small goals.

Elevating legs overnight can be worth it but u shouldn't b substituting raising ur legs for moving unless u've been told not to walk by your Drs. I was only told no walking for 48hrs when I was first diagnosed in hospital as I had such significant emboli and they couldn't find DVT's so were initially worried that there may b a possibilty of clots still being on the move. Most people r told to walk and exercise as much as u can tolerate. I've found slow and steady is best for me. I was extremely active pre-PE so it was been very difficult to adjust my mindset about my activity levels.

I also have trouble with low INR but it doesn't make me so anxious anymore. They just keep adjusting my dosing to get it back up.

It will all get easier, u r very early days yet.

Thank you so much for the advice. I am staying hydrated and might even be over doing it. I typically drink alot of water, but I think I might even be drinking more now!

I suffer from depression, too (even prior to the PE), so I can totally relate to that. It can make doing even the smallest tasks seem impossible. When I think about what might of caused my PE I think a possibility is my immobility when I get depressed (I can spend entire weekends in bed).

How will they test to see if your emboli were caused by DVT? Use ultrasound to check your legs and if they find a clot will DVT be the assumption? I am curious how that is diagnosed.

Did they say you would be on Coumadin for life?

I had a Doppler ultrasound done the day after diagnosis with no DVT in my legs so the explanation at this stage is maybe clots in my pelvis. They are not sure what caused my PE's as I don't smoke, not on birth control, not pregnant. I had surgery 3 weeks before so they have guessed that it was related just strange that it took that long to raise its head.

At this stage the plan is for me to go off Coumadin at 6 months post diagnosis. The only change to the plan mat be because my clots are still there so I might be on it until I'm given the all clear. The only reason for the re-scan was due to my ongoing breathlessness and ongoing huge fluctuations in heart rate and BP. Go back up the respiratory specialist as soon as he comes back from holidays to work out what to do next.

Hopefully you take some comfort in knowing that although my PE's were very substantial and that 50% of my lungs are still affected that I am feeling better. I found getting through the 1st month out of hospital to be the hardest - really struggled with the depression. I've now relaxed a lot more with it and taking life as it comes.

Maybe when u feel like spending all weekend in bed you could set urself a small goal each day eg. Walk up and down the hall every hour. Set ur alarm every hour and put it out of reach so you have to get out of bed. It sounds like u need better control of your depression - are you on meds? I know it's often hard to talk to a PCP but are they looking after you in that respect also? I hope there is something that can b done to help u more with ur depression.

The more water you drink the more you're forced to get up and go to the bathroom, so not only are you hydrated, but also getting up. The only bathroom in our house in on the second floor, so I'd have to constantly walk up stairs to use the bathroom. It was really hard, but I think it ended up being the best thing for me. I also refused to stay in my bedroom during the day. That made it too easy to lay in bed all day.

I no longer cross my legs. It was a very hard habit to get out of, but with the DVT, I just thought I don't want to mess with my circulation since it's already jacked up.

When I was home recovering from the PE/DVT, I was told to walk as much as possible, per my doc, because of the DVT. It was painful to sit, so I laid on the couch with my leg elevated, and then I got up to walk. You kind of gotta force yourself. My theory is the more you move around the quicker you recover. So it's a balance between taking it easy and movement.

I agree about setting small goals. I remember when I got home from the hospital, I set goals, like, ok, I'm going to walk to the garage and back every hour. That's it. Then the next day, a walk around the yard, then doing laundry. You just kind of build on what you do. It will help you physically and mentally.

Having depression on top of this is tough, because anxiety can play such a big part in recovery. Stay on to of depression, and if you feel like your sinking, talk to your doc, or someone. It's hard to combat that when you're vulnerable with a health issue.

First, if you're on shots, you are protected against new clots, regardless of what your INR is. The shots work right away and prevent new clotting ... the warfarin takes a while to kick in and get stabilized, but you ARE covered until it does.

For me, with my first DVT (in 2005 at age 30), I was told to stay on the couch with my leg elevated for a week to let the clot stabilize. After that I had no restrictions on activities or walking. It was what I could handle (and I couldn't handle much at the start). With my PEs, they didn't restrict my activities either, just told me to take it easy if I needed to. And I really did need to!

The elevation of the legs can help with pain and swelling since it keep blood from pooling in the legs. If you're a couple weeks out the chances of the clots moving is pretty much nil.

Hang in there! If you have a question, guaranteed, someone else has had it before too!

This sounds just like me, I just signed in over at the DVT board, I am in the hospital 3 days now.
My INR is 1.3, they say when it comes up
to 2, I can come off the heperin drip maybe tonight. This is very scary, I went on progesterone BIH oral 2 1/2 months ago. Docs are wondering if that was the cause. Or maybe my afib which I haven't had an episode of in 11 months

I'll keep you all posted

Dee

If you are bridging on Arixtra/Lovenox then the anticoagulation is covered regardless of INR. Arixtra/Lovenox works as an inhibitor to Factor Xa activation, an early-stage player in the clotting cascade, instead of affecting the liver's overall production of various clotting factors as does Warfarin. When the INR becomes therapeutic, then the more expensive and inconvenient Arixtra/Lovenox bridging can be discontinued in most patients. It can take a few days to a few weeks to successfully bridge to Warfarin.

As your clots age, their composition changes. Newer clot material is formed as a fibrin mesh with trapped red blood cells. The latter component is the more volatile and more subject to embolizing. Over time and treatment, formation of new clot material is thwarted by treatment and the system gets its chance to resolve what has already formed, eventually down to just the more stable fibrin component. Therefore, greater degrees of safety are quickly reached even though the resolving process is quite long.

Under a requisite approval from a physician, movement may have certain benefits for many patients. Especially in the legs, use of the muscles can boost circulation and reduce pooling in the lower veins, whether they are healthy or damaged. Personally I found outdoor movement - walking for starts - to be better for the spirits. The four walls of the indoors tend to echo the worrisome thinking.

Of course, your doctors can best advise what is good for your case. Generally speaking, elevation may alleviate any swelling in the lower extremities, as can sitting with legs extended. Compression socks work well for most people, but different doctors give different advice as to whether/when to start wearing them, or what level of compression to wear. Regardless, now is a good time to be asking such things of your medical advisors. Good habits in early recovery can make some difference, however marginal, in certain long-term outcomes.