Hi, you can adjust the timing of your lovenox so you can do it at a more convenient times. I would just start a little doing it later and later each day until you get to the time that works best. Also it doesn’t have to be exactly 12 hours apart between injections. As long as within in an hour or two it should be fine. For the injections, it helps to inject the needle straight not on an angle. That always helped me keep pain to a mininum. Also try not to rub the injection site as I found that to make it worse. It can take a little time to get therapeutic on warfarin but if you are close to in range they usually take you off lovenox. It’s really not intended to be long term and when it is, it’s unusual, like when all other forms of anticoagulants fail.

I would suggest trying to address the anxiety because once that is under control, everything else doesn’t seem so heightened. I did a lot of meditation techniques to help redirect my thoughts. I also saw a counselor a handful of times as well. I found that super helpful actually.

The anxiety is really common. So is the hyper vigilance that comes with it which keeps you in this state of high alert all the time. That’s not sustainable nor helpful. Distractions are helpful.

It can take a few months to feel energized and back to normal so there may be times where you feel really tired and have some risidual shortness of breath or back and chest pain. That’s pretty normal too.

Talk to your doctor about all your concerns too.

You’ll be ok.

Thank you rmb.

Since I am already on leave from work, I made a bunch of doctors appointments today as I already have a bunch of other medical issues that are unrelated to my PE. Normally, this would be a real pain and I would spread them out, but for some reason I take comfort on knowing I will be seeing a medical professional Monday through Thursday next week, like they are keeping an eye on me..

How much time were you off from work after your PE? I just don't want to go back too soon and then have more problems.

Thanks again for the reassurance. I appreciate it.

Hi I went back part time a week after I was discharged from the hospital and went full time a week after that. I had a desk job and some flexibility so my doc was ok with going back as soon as I wanted to. I won’t lie. It was challenging. I was really exhausted all the time and didn’t feel that great. Honestly I think just being in the hospital for a week really diminishes your conditiioning and stamina, let alone the recovery from the PE. In hindsight I might have waited another week before going back but mentally I just needed the interaction with other people and to get out of my head. I was also afraid if I stayed out too long from work it would take that much longer to get my stamina back. That was just where my head was at.

Talk to your doc about going back to work, just to feel out what he/she may recommend.

I have a chronic disease so I get when you are managing a separate condition. So I too had all the different doctor appointments the first couple of months after diagnosis. At first it felt comforting and then after a while I just felt kind of weighed down and depressed by it. It literally made me feel like a sick person which is so not me, even with the chronic disease. That was kind of a wake up call to me to really start living my life and to remind myself I didn’t survive a PE to be afraid and stressed all the time.

You will get there. You really will. It’s just that first month or so after the PE when you are so vulnerable and confused, plus not feeling great, that you feel like this must be how It’s gonna be for the rest of my life, that messes with your head.

Hang in there, be patient and try to surrender a bit. Do stuff for yourself like taking walks (it’s hard when the weather isn’t great), having coffee with friends, yoga, meditation, whatever feels good, and keep doing it.

You are spot on about needing to start living life again. Unfortunately, I am not there yet. I have a lot of after effects and side effects from the PE and I suspect the medication. Nothing completely intolerable yet, but definitely prohibitive of returning to work. While mostly sedentary, my job is very involved and requires at times a lot of talking. I'm seeing my PCP, Hemotologist NP and Cardiologist this coming week, so hopefully they will be helpful in developing a return to work plan.

I work 35 miles away from home, and though I am near a couple of hospitals, I am not near mine should something bad happen. Fear is still a problem I am dealing with. I know it gets better over time, but I wish I was seeing glimmers of that now.

When I first started taking warfarin, it took me 9 days to reach therapeutic. Hospital started me on 10mg daily, but it actually wasn't enough. I've been on 15mg daily for the past several years. Tinzaparin injections felt like injecting fire, and always left a nasty bruise.

For the first few months after diagnosis I was on a liquid diet. Was taking Percocet, which caused constipation, and I had almost no appetite, not to mention the straining for a BM made me feel like my lung was going to explode. So it was meal replacement shakes for me for a while.

You are healing, and you will be for a long time. It's difficult, because you can look in the mirror and appear fine, and everyone else looks at you and thinks you're fine too. But inside you're battered and bloody. Your body just fought a massive battle and WON! Take pride in that, and look for the beauty in life that you've been given a chance to continue seeing. Not everyone is as lucky as we are to have a PE, and survive it. My PE was in 2009, when I was 24. My son was born in 2012. The memories of May 29th 2009 will be vivid and horrific for the rest of my life. The memories of my son entering this world and growing up in front of my eyes are more powerful, though, and give me purpose.

Life is suffering. For everyone. We are all suffering or will be suffering at one point or another. Find something worth suffering for. Good luck in your journey. It's coming up on 10 years now, post PE for me. I promise you life gets better.

And remember, your PE was just a week ago. I didn’t start to feel really good until months after diagnosis. Doesn’t mean you don’t or can’t do anything while recovery but just that it takes some time.

Everyone’s recovery though is different. I had massive clots, both lungs and heart damage and truly within 3 months I felt pretty decent. Some people it’s longer and some people it’s shorter. If you are given the ok from your doctor, try to do light exercise, even starting with light walking, swimming or a stationary bike. And even if it’s just for a few minutes at a time, nothing crazy. It helps get your stamina back and I think makes recovery easier. That’s just my opinion

Oh my gosh! I am SO happy to hear about your recovery. You give me hope for sure. I have read so many personal stories of DVT and PE survival and I find it interesting that even though everyone had this happen to them, everyone's story is very different.

My PE is suspected to have been a result of an arthiscopic knee surgery and long time use of OCs to control endometriosis. Since I am still considered post-op for the knee surgery, I am still in PT. Obviously, I did not go last week, but I am to return on Monday. I hope I do ok. If not. The hospital is right across the street.

Thank you imtav.
How long were you on injections before you were able to do Warfarin only? I hate that you had the same bad experience on the injections, but it gives me comfort to know that it happens.

I have struggles with appetite. When I do get hungry, food looks good, I start to eat and then I can't anymore. Also, being on Warfarin I have to change my diet because I used to eat regular and at times large amounts of Vitamin K rich foods. In some ways it's fun knowing that eating food like donuts won't hurt my PE recovery, but while blood clots do not run in my family, heart disease and diabetes does. So now, I feel like I am at a loss because the foods that are good at keeping those things in check, I can no longer have at least not for as long as I am on Warfarin. Also some things taste different now. Not sure if that is common or not.

You can eat your normal diet on warfarin. The idea with warfarin is consistency. So if you eat salads 5 nights a week, you can still eat salads 5 nights a week. Let your doc find the right dosage for you based on how you eat regularly.

Don’t over think the food. It just adds to the stress.

That's where the problem is. Even before all of this I would get bored with food, so nothing has ever been consistent. I am not a person where I will eat the same things in regular amounts always. I see my Cardiologist tomorrow, so maybe she will have some suggestions. I just don't want the PE event to put me at greater risk for heart disease due to the dietary restrictions. I already have heart damage from the PE.

The tinzaparin injections were for when my INR was low. Multiple times I had returned to the ER because of chest pains, and discovered my INR was below therapeutic (but no new clots). So they'd inject me, send me home, tell me to come back the next day(s) for further injections until my INR was therapeutic again. When I was first hospitalized, I was on heparin IV and remained on it until INR reached therapeutic.

I actually take a vitamin K2 supplement now. It helps to stabilize my INR because I'm getting a constant dose of K2. Like rmb said, there really aren't any dietary restrictions except for being consistent. When I asked my doctor about drinking alcohol for example, he said he has patients on warfarin that are alcoholics. Told me whatever my 'normal' is for alcohol, that I should stick to that and don't have more than 1 or 2 drinks different from my normal. So if you only drink at social events, limit yourself to 1. If you have a glass of wine with every dinner, don't suddenly drink an entire bottle one evening, but it's ok to have a second glass every now and then. It's the same with greens and foods containing high vitamin K.

Just be diligent with your INR testing. The idea is that you eat/drink/do what you want (consistently), and your warfarin dosage is adjusted accordingly.

I read a study about the importance of following up with a doctor after a heart attack. The researchers' hypothesis was that frequent visits and strict rules would decrease mortality rates post heart attack. So for the control group of patients, they were given general guidelines for trying to live healthy, and told they only needed to come back if they had concerns, etc, or for annual check-ups. The second group was given strict diet/exercise rules to follow, and were instructed to have frequent visits to the doctor to monitor their health. Surprisingly, the researchers discovered the exact opposite of their hypothesis was true. The first group had a much lower mortality rate than the second. Stressing about your health is actually BAD for your health! I'm guilty of this, too.