I know there are a lot of people on this forum that have been lifers for quite a while, but is anyone else new to this like Calista, because i think the perspective of others who are new to this could help.
Calista i think much of the depression people suffer post illness is caused by a perceived lack of control over their body/life/health etc, so anything that helps you feel some increased control could help. Like a new fitness program, new life goals or even something like a healthy eating plan can all lead to a feeling of more control over your circumstances.
I hope you start to feel better soon Calista cause being depressed is awful and lonely, keep sharing with us all and hopefully the support will help xo

I think that Aussie makes some very good suggestions about taking control back in your life. And even being on coumadin is a part of that as well.

I feel certain that Aussie was NOT including me as one who is 'new to this' because I've been a member of this board for a long time, and I don't usually vocalize what I myself am going through in terms of treatment. Since I have several years of experience in dealing with clotting, I mostly try to help newer people who are scared and my distance from the initial event I hope can provide a different perspective which can help calm the easily set off nerves of people who are new. But, that doesn't mean that I am not going through my own issues as well regarding treatment.

I am myself in the situation right now of having to decide whether to stay on coumadin for life or not. I don't frankly like either option, because there are risks both ways. I experienced two clotting events exactly two years apart, which is not a fantastic track record. I don't actually know why I'm clotting either. Genetic tests have been run multiple times - negative. I'm having a lot of health issues, so there's a possibility I could have an underlying illness causing clotting, but I don't know still. So in my case too I just have a lot of giant ????????

What I do know is that the second time I was put on coumadin, I did much better on it than the first. I looked at it differently as a part of my life, and not a temporary nuisance, which meant that I both accepted the fact I had to take it, more than the first time, while also learning how to live my life basically the same as I did before it. I'm now off of it again (not really with dr approval, but it's ultimately my choice) and one thing I can say is that although I don't like taking coumadin, at the end of the day I think I rest a little easier when I do take it. I mean, on it I will likely always have in the back of my mind a little bit of fear of 'what if?' something bad happens and I have a bleed. But what I know from my experience is that I actually worry less about that (and have honestly fewer precautions to take to avoid it) than when I'm not on coumadin, when I have to worry constantly that I'm not sitting too long or sitting in a bad position for my circulation, or staying sufficiently hydrated, or what's that pain could it be a clot it feels a little strange and should I ride it out or see my doctor or go to the hospital?

I don't know any of the details of your situation, but I do know that after we've clotted multiple times we need to basically pick the lesser of two evils, because while you may be uneasy about life on coumadin, I can guarantee you'll also be uneasy about life off coumadin. Unfortunately, some of us might never figure out 'what's wrong' (and honestly even if we do, the treatment is mostly still the same - we have to stay on blood thinners), but taking the medication is actually taking control of the situation, not surrendering to it.

Something which I'm considering talking to my doctor about, and you might consider this as well once you're past the clot treatment phase, is staying on a lower dose, or keeping a lower target INR. There is someone on this board who has had success with that - it keeps us a bit out of range for clotting risk, but would present less of a problem should a bleeding issue arise.

I'm sorry you don't have more support at home, that must be very difficult, but feel free to talk about whatever you need to here, and everyone will try to support you as well as we can.

Thank you guys! I really appreciate your support!

Yeah, I've totally been there. The previous two ladies covered a lot that I was going to say, but I just wanted to add my two cents.

I had two DVTs before my PEs. One was in 2005 and one in 2009. Both were blamed on BC (regular the first time, progesterin-only the second time). I fought tooth and nail to come off warfarin after the second clot. My primary was not sure about it, but my hema said it was my choice. I also am negative for all disorders and I figured I was never going near hormones again so why stay on the warfarin for the rest of my life?

Five months later, I was in the ER with multiple bilateral PEs. I was terrified and the emotional aftermath of those PEs has been one of that hardest things I've ever worked through. Not that I'm trying to scare you, just that I want it to make sense why I was delighted to stay on the warfarin at this point. I wouldn't want to come off now and I am totally comfortable with this.

I guess what I'm saying is that sometimes your point of view on these things change as you work through things and figure out more about your situation. Something you fight against now may be something you welcome with open arms later. But ultimately you've got to process through these things and come to peace with whatever decision you make.

Also, what Aussie said is dead on ... a lot of depression comes from feeling like you have no control over things any more. That is certainly true for me and I've had to do things to feel like I am in control. I eat pretty much what I want with an eye toward Vit K (if I've been running low, for example, I avoid the all-you-can-eat salad bar for a week or two). I also have a home tester, which was a big deal for me because I felt like dealing with my lab--and having to go during their hours and having to make sure they had current orders and having to wait for results--was sucking the life out of me too. Getting the tester freed me from all that and I feel much more in control of my INR as a result.

There is nothing like dealing with clots to make you feel alone. Not many people have dealt with them and while you "look" fine, you are probably a ball of knots inside. I'm sorry your home isn't a very supportive place right now, but try to keep the lines of communication open at least, and come here to vent as you need to. It does get better. Today sucks, but tomorrow will be one step closer to feeling yourself again.

Hang in there!

Learning that the treatment would have to be on-going was, IMHO, far worse than the diagnosis itself, which I had previously hoped to be some reversible fluke. No matter what anyone tells you to the effect of "don't let it get you down", it is perfectly normal that it will get you down. There is a vital aspect of your health, once so firmly in your control, that is now gone and will stay gone. Grieve what is lost, as you must. Grieving is a part of healing.

Meanwhile the best you can do is handle it one day at a time. I do not have the full history of what brought you here, and what time frames are involved, but sometimes a bit of reconciliation with reality can come surprisingly quickly if you let the emotional process run its course. There are others with lifelong chronic conditions from whom you can draw the example - diabetics among them. Many have incorporated their particular health routines into apparently normal lives, and have done so for decades, despite having once been whacked with bad news just as you have been. You too can find some acceptance when you are ready.

Once you have accepted the worst and found the worst to be not-so-bad, there are small improvements to be found and gained from the worst. Now, more than four years out of the hospital, and in spite of the dependency on treatment that I despise loathingly, I have gained back enough independence to see a doctor no more than once a year. I'd suppose that is reasonable for anyone, afflicted or not.

I think it's very overwhelming and disheartening to have multiple clotting events and no one can tell you why. It can make you feel like they're missing something or that there's something sinister going on your body and that IS depressing.

But the truth is, for many of us, there are no answers for why we clot.. And that's that. It was hard but after my second clot, being told again that they don't know why, I just had to really get to a place of accepting that they don't know. And I had to find a way to be ok with that. Because fighting it all the time, the wondering why, the constantly dwelling on it, well it's ultimately wasted energy and it takes all the joy out of your life.

I've been taking warfarin for about 4 1/2 years now and will be on it forever, until something better comes along. I live a completely normal life, I don't feel put out or burdened. I take a couple of pills every day, check my INR every 30 days or so, depending on what my level is, and just carry on with living. Big deal. It's only a big fat burden if you see it that way.

You're life is still yours and the future is bright. It may not seem that way, but if we get out of our own way, that eventually comes to light.

thank u everyone for your input!!!!!! Its appreciated more then u know!

i feel the same way!i 2 am a recent lifer,i was on warfarin for a year after my stroke but now on it for life after th pe.i 2 want to know why.