Hi and welcome! Sorry you had to join us, but hopefully you'll find this community helpful and supportive!

First, let me tell you that the effectiveness of Xarelto isn't measured with the INR. The effectiveness of warfarin is measured by INR, but Xarelto affects a different part of the clotting process, so the INR measurement doesn't reflect what the Xarelto is doing at all. Don't go by that INR measurement to decide if it is or isn't working. For the most part, people on Xarelto take roughly the same doses (it isn't nearly as finicky a medicine as warfarin), so you should be "covered" with the dose you're on now.

Also, many people don't have all the symptoms for a clot, but do have clots. With my PEs (multiple, also in both lungs), the only symptom I had was severe shortness of breath. No pain, no coughing up blood, none of the other stuff that can happen. Having only a few symptoms is fairly normal, but it can make it harder to diagnose PEs. It sounds like you were lucky in that they figured out what was going on with you very quickly. Some folks go months before someone figures out what's wrong with them. In my experience, a faster diagnosis means a faster recovery.

Also, you're not going to feel 100% right away. Clots are really a major shock to your whole body. They compromise two of the biggest systems in your body (the circulatory system and the respiratory system) and it takes a while to heal from that damage. Parts of your lungs have been deprived of oxygen (or flooded with blood) because of the clot blockages. Your heart has been working double-time to try to get blood past the clots. Part of your body haven't been getting enough oxygen just because your heart and lungs aren't working their most efficiently. You may have had some tissue death in the lungs because the blood couldn't get past the clots and that can cause pain for quite a while as it heals. It really is a huge trauma and it can take a while to feel back to 100% again. It really is impossible to tell how long it might take for you particularly, because every patient is different and every clot situation is different.

I do know that for a lot of people, pain can come and go, SOB (shortness of breath) can come and go, exhaustion can come and go. You may develop new symptoms later as you start to push yourself to get back to normal (I had no pain at diagnosis, for example, but started to develop some after about a month when I started to push myself too hard at work.) It is all part of healing and it really can be pretty nerve-wracking to try to figure out what is good and normal and what isn't.

Also, keep in mind that even if all your clots disappeared in the next five minutes, you wouldn't feel better immediately. The damage they leave behind still has to heal. My cardiologist compared it to getting cut with a knife ... most of the healing happens after the knife is gone.

And, it might sound weird, but there really aren't any restrictions for most of us. Clots are dangerous, sure, but they're most dangerous BEFORE they're diagnosed. Once you're diagnosed and you're on the medicine, there really isn't much else to do besides wait for your body to heal. The medicine doesn't dissolve the clots, it just keeps new ones from forming and the old ones from growing. Your body has to dissolve the clots and heal and sometimes that takes a while.

It does seem strange that after something so life-threatening there isn't much follow-up, but that really is the way it is. You might expect dozens of doctor's appointments and consultations and restrictions, but there really aren't any unless you develop other problems. But that isn't common.

For most of us, it is "activity as tolerated" and maybe we can't tolerate much for a while without feeling really tired or in pain, but it really is unique for everyone and you'll have to figure out what works for you.

As for going back to work tomorrow, it might be helpful for you to take some time off. You might check with your HR department and see if you have access to FMLA leave, which can protect your job while you deal with medical issues. You'll need to have your doctor sign off on it, but that isn't usually an issue. With FMLA, you can take up to 12 weeks off, or you can just use it to take some time off when you need it. For me, I went back to work 4 days after getting out of the hospital, but I was on a reduced schedule for a while and didn't work full-time for about 4 months as I was slowly increasing my schedule. The FMLA covered me for stuff like that and for doctor's appointments or days when I was just too tired to go in. Not saying that'll be the case with you, but it might be helpful to have it set up as a backup.

And, definitely keep an eye on your mental health with all this. I had massive anxiety after my PEs and it took me quite a while to get that under control. For me, the mental recovery was really a lot harder than the physical recovery in so many ways. I mean, I think it is totally normal to freak out for a while, just because it seems like your world has been turned upside-down. But, if you find that months drag on and you're still terrified, you should look to getting some help with that. Plan now for how you're going to take care of yourself, because this is definitely a time to baby yourself and cut yourself a little slack. Call in family members to help with the kids, make sure you're getting enough sleep, sign up for FMLA, stay open with how you're feeling. Many of us wind up doing some therapy or taking anti-anxiety meds to help us get through this. Others like meditation, journaling, etc. Whatever suits you, definitely keep an eye on keeping your stress and anxiety levels down, because it can take over your life if you let it.

Not sure what to suggest about possible causes. Not everyone finds out why they clot. (I've clotted three times and still am not sure why.) There are other, more minor causes that can add to create a "perfect storm" to cause clotting: dehydration, inactivity, injuries. You might consider seeing a hematologist in a few months to talk about possible causes for the clots, but I don't know that that is anything that has to happen right away.

For the moment, take a deep breath and try to relax. You're through the hard work of getting diagnosed and getting treated. Now you just have to navigate the healing process, and hopefully that'll go pretty smoothy for you. It really does get better, just not always as fast as we want it to. Hang in there and keep us posted on how you are doing!

Hi, and welcome to the group.

I am a month out from my 2nd PE. I am now in the blood thinner for life group. They haven't found a cause for either of my clots. I have reason to believe that both of my clots were stress induced, so I encourage you to evaluate your stress. I mentioned that to my hematologist when I saw him this past week, and he was hesitant to agree. There are many factors that can create a PE, and I think that in my case there are some factors that medicine has not determined yet, and the stress may have added to them to make me more susceptable.

For both PE's the only symptom I had was shortness of breath. I also have chronic GERD (reflux), and I can attest to the symptoms being very similar (including the shortness of breath, but not to the degree that a PE can).

For my first PE I had something called a VQ scan to diagnose it. I think it was only one clot. I was good for an afternoon nap for a couple weeks for that one. For this one the CT scan showed multiple emboli (clot) in each lung. It also showed signs of a pulmonary infarction, which means that some of the lung tissue was deprived of blood flow for too long. That damage is permanent, and the Dr. stressed that other parts of the lung can compensate. He also did not rule out a 2nd CT to evaluate the damage.

It is important to have a working relationship with your Dr. I can not stress that enough. Drs. are notorious for not disclosing information. My thoughts on that is they don't want their patients to start worrying about it.

I am sure your children keep you active, as the father of one (now grown and married) I can attest to that. As far as being alone with your kids, all I can say is as tolerated. I am 4 weeks out from my PE, and I just caught my O2 at 87 after walking around. Even though my Dr. did not reccomend it I bought an pulse oximeter. Walmart has them for about $35. I intend to carry that in my bag of tricks for a long time. If you can get your husband - even neighbors and relatives - to help with the heavy lifting that would probably be advised. You are not going to feel better overnight.

Do you have a General Practitioner? I would encourage you to make an appointment with him and stress (sit in his lap if you have to) to make him understand that you do not feel okay. Also you are not going to feel better overnight. I am a month out and I am still tired at times. A limited schedule might be in order.

I also encourage you to spend time for just you. Stress management is in order. Valentines Day is Friday, maybe some quality time with your husband might be in order.

Not sure what else to say. Have a positive mental attitude.

:)
Mike

Thanks for the reassurance. Reading posts here has been helpful, makes me feel better about what my new normal might be.

So once the clots are in my lungs and I'm on meds, can the clots still move? Or am I out of immediate danger?

I already work part time, and have a flexible schedule so I think I'll be taking advantage of that for a few weeks. It's also been decided that my MIL will stay with us for a month to help out (and that's good, I love her and she is helpful)

I've shown to my gp twice already and am set to see her on Thursday. The hematologist and pulmonary doctor from the hospital also told me to follow up in a week. I know my GP didn't want me to go on xaralto because she says it's too new but the doctors at the hospital all thought it was good and it would get me home faster which was too much to pass up as the kids are 6,4,1 and the older two thought I was going to die :(

mama I totally understand. I had multiple PE's in both lungs with not symptoms or risk factors. I also think mine was stress induced and the docs dont know everything about this. They put me on coumadin but I requested to be changed to xarelto and I am much happier on that. No diet restrictions either.
The above comment is correct in that the measurement is not INR.
My PE's were in Sept 2013 and I am just now starting to feel normal again.
Activity as tolerated is what they told me and I think it is a good measure. Dont rush back into work if u dont feel like it. It will take longer to heal if u push too hard..
Feel free to send me a private message.
Dianne

Hello Mamajena:

You've been through a lot this past week. I was diagnosed with two DVTs in my left leg and large PEs in both my lungs. I was admitted into the hospital on November 4th and was discharged on the 7th. I took off two weeks from work and then went back after that second week (middle school teacher). Right now, I think you should take a week or two off and try to rest your body a little. Listen to your body. It will tell you what it can take and what it cannot take. So, once the clots move up into your lungs, they are lodged there. The clots will not move from where they are and because your on the medication, those clots in your lungs will not get bigger. In time, they will be reabsorbed back into your body. That's where I am now. It's been about three and a half months since my diagnosis and I'm scheduled to see the Hematologist this Tuesday for a D-dimer test and some other blood work. Be patient. You're going to be OK......

Indwen

The others are right that clots already in your lungs really can't move anywhere else. The blood vessels get smaller and smaller in the lungs until they become capillaries, which are so small that only one blood cell at a time can get through. WAAAAY too small for a clot to get through. So, the clots are pretty much stuck until your body dissolves them ... something it is already working to do.

I'm glad you've got an appointment with your GP already set up. If possible, write down the questions that you have between now and then... it is SO annoying to get out of a doctor's appointment and realize that you forgot to ask THE question. Also, consider taking someone else to the appointment with you. When you're overwhelmed and tired, it can be really helpful to have someone else to help you remember things and to ask questions.

Best of luck! Keep us posted!

Hi mamajena- I just wanted to add a couplea things- I'm on Xarelto and love how easy it is. No INR testing- no food restrictions. It's been a blessing for me.
You mentioned feeling woozy.....that's how I described myself feeling for quite awhile until my doc told me it's likely low blood pressure. I run normally around 100/60, but can easily drop lower if I don't have enough fluids. He encouraged me to have a little more salt (I was on a low salt diet) to help keep the blood pressure up. I also drink a large water bottle of hibiscus tea every day for fluids. Since then the woozy feeling has gone away.
I also have no idea where my clots came from. I've had tests up the wazoo with no answers. So, blood thinners for life I suppose.
As far as going back to work......... I advise to just take it slow. It takes months and months to get back to feeling normal. Pushing it doesn't make the process any faster- maybe even slows it down by over stressing your body.
Best wishes on your recovery:)