Wow I have so much to read, you guys have a lot of good info here as I look thru other posts. I have a lot of other health issues including autonomic dysfunction, so the blood already pools in my legs and doesn't go up to my brain. I'm a fainter and quite dizzy, the dizziness is of course worse now....

And I am also struggling with sleep. The last few nights I barely slept at all. I also have a sleep disorder, but the pain in my leg is hard to manage. I cannot find a position that doesn't hurt. :( So, that's a bummer too.

I wonder why they don't just US both legs when you are in the ER. Wouldn't that make sense? I am due an US at the end of the month, but may ask for both legs to be looked at. Especially since I am having surgery too.

Ok, I may add more stuff as I read thru your posts... or maybe tomorrow. It is very late :) lol

Night!

Hi, so there's no reason to order an ultrasound on both legs because the treatment wouldn't change in the off chance you had clots in both legs.

It is normal to have a lot of pain post DVT diagnosis, and sometimes the pain does get worse. Your body starts absorbing the clots so they won't break off. The Xarelto prevents new clots. Also the filter will prevent its from going to the lungs. So you are protected.

Honestly, the first 6 months after diagnosis there's really not much to do. I wonder if you just followed up with your GP it would help you sort everything out. If you don't like your hema, talk to your GP about pain. I think I mentioned on the PE board asking your doc about compression stockings. They can sometimes help.

You may find that you don't need all these specialists, particularly right now and all at the same time. I found that the more docs involved, the stressed out I got.

Hi rmb.. thanks for helping me find this board. :) I guess i just want to know about the clots. I have had swelling in both legs and been ignored for 7 years. The left leg was worse, but I would still just like to know. And no one is watching out for me here yet, so I think I would feel better if I saw a couple people to help me. My discharge papers said to see the pulm doc and I already had copd from before so I hear this guy is good that I got the referral for. I just have too many questions and zero answers. No one told me to wear compression hose. I meet the hema who dx me in the hosp with APS on wednesday, but she is out of network and I am terrified of what she will charge me. But I trusted her, and want to see what she says. I am very disappointed with the practices down here, some are excellent, but there always seem to be errors, and some just don't care and are utterly awful. I am frustrated.

I will ask her on Wednesday if I keep my appt. If this is APS I need to know more.

I guess I am worried that the filter is not fool proof. And it causes clots, so that has me worried. Like, I am not up at night worrying, but I just don't like it. And they said I 'probably' wont have a problem. lol. They just didn't sound convinced. But the old clot is what I am worried about. Where will they go when they break off? It was huge, so it has to go somewhere.... will it try to go up? :(

I have been so sick for so long that I just want someone to care about me and my health. Somehow, if I can get the money together, I will send all my records to my old internist in NY, the guy is a genius. He will figure all this out for me. I hope he doesn't retire soon!

My new GP here is nice, but we went over my whole history, not really the clots. So, yea, I am a little in the dark.

I mean, they tell me I could die today, then they release me, and that was it. lol. I need more to go on.

Sorry I babbled... I'm tired...lol.... thanks for listening:)
Have a good day!

If you're up and getting more active, then yes, I'd definitely expect increases in pain. At two months, I definitely had issues getting around. For a while, I'd get dizzy and sick every time I tried to walk, since so much blood was backed up in my leg. That went away over time, but slowly. Recovery can definitely take a while and patience is key ... there's really not much you can do to speed it up.

At 2 months out, the clots should be pretty stable (not likely to break off and travel) and your body should be working on dissolving them. Any thin, weird parts that were likely to break off are usually the ones that dissolve first, so you should be in pretty good shape on that front. After my first DVT, I was only told to stay on the couch for a week. After that, it was exercise "as tolerated" (although I couldn't tolerate much). I have to assume they were really worried about PEs during that first week ... after that, not so much.

Definitely make sure that you're keeping your leg elevated when you're sitting and sleeping. That can help with pain. I'd check with your doc about whether you should wear compression stockings and whether you can use heat. I was told to use light heat during recovery, but some docs suggest cold, so check with yours.

I think your priority should be to get a primary doctor to try to help organize everything. I depend on mine a LOT and anytime I'm trying to sort out symptoms, specialists to see, etc., I start with her. Also, if you have one doc you like, he/she can usually recommend other good ones. Even if you just have a dentist that you like, call and ask for recommendations. I mean, I saw lots of specialists after my PEs, and I see none of them now (five years later). My primary handles 90% of my issues.

Hang in there! It does get better, just never as quickly as we'd like.

Well that's the kicker about a PE/DVT diagnosis. It's critical to get diagnosed, but once they start treatment and you're stable, it's really no longer a critical situation. I know that's hard to get our minds around for such an effed up situation, but it really is that anticlimactic. If you were still in danger, they'd not have discharged you from the hospital.

Remember, anyone treating you at the hospital is treating the immediate issue and so everything is geared towards that. They sometimes aren't going to suggest compression stockings right away. So that's why we say ask your doc about them, to see if it makes sense for you and your situation.

I have a filter and it has not been a problem. The business about clots getting caught in them... if you're on anticoagulants, that's usually not an issue.

Listen, I was very critical when I arrived by ambulance to the ER with my PEs. They were preparing my husband for the worst and I had to have clot busting meds or I was going to likely die. I was in the ICU for 3 days and the cardiac care unit for 4 days. I tell you this not so much to commiserate , but to tell you I understand the burden and confusion that kind of frightening experience puts on us. I really do. I have no specific reason for my clots except I have an autoimmune disease that can sometimes increase a person's chances of getting a clot, like air travel can increase a risk for a person getting a clot. But other than that, I have no real reason why it happened. It's a very confusing time. But my point here is that even though it was a dramatic experience and I didn't have a lot of information, everything turned out ok. I'm fully recovered. I freakin' lived to talk about it and so did you.

You're going to be ok. A lot of things are revealed over time. Be patient. It can really take a bit for things to come together.

Hey! I will be back to respond later today, I need to run out.... but thank you so much for all your great info. I will get back to you when I return. Respite care is here for my stepdad and I am running out with mom, need to get dressed.....We have nowhere to go, but we are getting in the car anyhow. lolol. catch you later!!!! :)

Well that was cut short... it was nice and sunny and then the sky turned black. lol. Oh well. I am so exhausted anyhow....

tossnturn.. I get dizzy too walking around. More so than before, but I am used to it from the autonomic stuff. Now I just turn my head or move my eyes and I am dizzy. The swelling is annoying.. my good foot is swollen, and under the knee's too. Both legs are similar, its weird, but the dvt leg is just worse. Generally very subtle stuff... I didn't turn red or have major swelling. I had been told 2 weeks prior to just get liposuction.... by a rheumatologist!!! Hence, my sincere lack of trust. Been dealing with this stuff for ages:(

I am glad to hear that after 2 months the dvt should be stable by now. That is good! I'll try to keep my leg elevated, but I don't think I have enough pillows... lol... I have to scavenge and see. When I get some money I will buy a few. I'll ask the out of network hema on wed. what she says about the hose. I already have them from the other condition, but now it's a double whammy.

I have to get to know this primary better and see what his referrals are like. My ex primary gave me horrible docs to go to. Like the rheumie... :(

rmb... Yes it's an effed up situation for sure! It just makes it so much more confusing when they tell you nothing. I am sorry you were so sick and scared out of your mind, I am sure. They were way more mellow with, I was not in ICU. I would have been more scared had I been. But yes, when they prepare your loved ones its hard not to freak out!!! lol. I wasn't impressed being told I could die that day. Not impressed, but I am sure it was true and that was before they found the pe's. lol. Actually, I am not sure why they didn't check for pe's until the next day. If they were scared I would die, wouldn't they have wanted to check my lungs??? Oh well.... anyhow.....

Do you have a retrievable filter? Mine has to come out, I don't know when. Been told from immediately, to not for 2 years. lol.

It is exhausting, and I am just thinking about it a little now.. my mother got ill right after I did, so it's like I am just starting to rest and recover now... but it has been a very highly stressful period for me. My brain is not sorted out with all this yet, but I am happy to hear you all saying that the worst is over. That is good news. Thanks so much for sharing with me!!!

:)

If they started you on heparin right away when your DVT was diagnosed, that would be the same treatment for PEs in most cases so that may be why they felt the CT scan could wait. 911 was called for me because I collapsed and couldn't breath so that's why the CT scan was done first for me. I had an ultrasound a day later to check my leg. There usually is rhyme and reason for what they do and don't do.

I have a permanent filter.

My freak out didn't happen until a month after I was home. I was a pretty cool cucumber while in the hospital.

Drs and medical staff say things like you could have died because they see a lot of people who do die from clots. I think they want you to understand the severity and I think a little bit of it is them celebrating your good fortune. My brother is a paramedic and tells me all the time how lucky I am because he has seen a few people drop dead from PEs.

Yea, I get it .... But he was pissy about it. lol. I didn't flip, I tried not to cause my mother was there. And at that point, I did not know if I would survive. He said 'you could die today, or you could die tomorrow'. So, I had no idea what would happen. I just tried to stay calm.

But I got a shot in my stomach when I got to the ER. I think it was lovenox. Not sure tho. I agree there is a method to their madness but I have seen too many mistakes happen, for me personally, in my own past with doctors. So, I just don't trust anyone anymore. But like you said, the shot in the belly may have been all that was necessary if that would have been the treatment anyhow.

It was all just kinda delayed. The ct the 2nd day and then they decided on the filter on the 3rd day. The whole thing was just not very decisive or swift in my opinion.

Anyhow, maybe it upset me because my mother got so upset. She kept bringing it up and does to this day. It was shocking to hear. He could have been a little kinder or more tactful about it, he was very matter of fact. I would have handled it differently : "Here's a shot of tequila ma'am... and there is a slight possibility of death in the near future, but you know, I am not God.. here, here, just take the bottle!! "
lol

I know we were lucky for sure though... I am glad you are here.. I am glad I am here too. It sounds like it was just awful for you, being unable to breathe... that is literally terrifying:( I had a bad asthma attack last year and it scared the crap out of me, my dad had just died of pulm fibrosis too, so I really feel for you and the fear you must have felt. How long til you were able to breathe comfortably?? You are very brave not to have flipped out. Maybe you didn't have the strength to flip out, maybe your body was keeping you calm to conserve your energy for healing! Or you were just too sick!! Or shock also kept you calm. I think that did it for me. Like, what is going on here? There is not time to really understand what is happening while it's happening. Actually, I was too busy puking to worry... lolol. It is amazing how different our experiences all seem to be. I am just absorbing it now to a small degree I think. Now that I have the time... lol

Anyhow, I am babbling again... sorry!!!!
And thank you:)

My filter was the third day too. They run tests and stuff to see if your blood counts are adequate for the procedure (at least for me they did) and then they have to make sure the heparin or lovenox is out of your system before the procedure as well, so you don't have a bleeding issue. Then they have to make sure a doctor is available to do the procedure. So there's stuff that needs to happen and it can take time.

Me, I'm not brave really. I think the reality of the situation doesn't always hit until later. When I was in the hospital, it's sort of like suspended reality. But I understand the affect it has on our families. My husband called 911 for me and we basically said our good byes in our living room waiting for the paramedics. I'll truly never fully understand what that was like for him but our families heal along with us. Don't spend to much over thinking things. You just have to look forward.

Hey, I also have APS. You have to understand that your DVT is still new and it's gong to take some time for you to heal from that. But some of your other symptoms can be due to our disease which causes us to have very sticky blood. You really need to read up about what APS/Hughes Syndrome is and what it can do to you. Some people with this disease get dizzy because our blood is too thick to pass through the small blood vessels in our inner ears.

This disease can also cause fatigue, migraines, balance problems, heart problems, Memory and concentration problems, and high blood pressure that can cause other issues. We can also have what is called mini-strokes (TIA's) and other circulation issues. The fact that you have swelling in both of your legs leads me to believe that you could have clotted in that leg at some other time. Our blood is too thick and needs to be properly anticoaulated in order for us to feel good. Some people feel better with an INR of 2.5 to 3.0, others feel better with a higher INR of 3.5.

My specialist has be on a higher intensity INR of 3.0 to 4,0. Usually with this disease, if your INR goes under 2.5 symptoms can return. My INR went down to 1.5 a month ago and I noticed it because I could feel the blood pumping in my neck and ears. I could hear it and feel it. I also have ringing in my ears from damage that has been cause due to poor circulation. Some people have gotten hearing loss from APS. I have high blood pressure that I can feel when my INR drops too low.

You have to understand that this disease is more severe than some of the other clotting diseases because we don't have genetic mutations, we have actual antibodies that are attacking good cells in our body causing us to have really thick blood. You should check out professor Graham Hughes site the APS foundation in the UK. You can also search for doctors who are qualified to deal with APS in your area. Most doctors do not know that much about APS. You can also look up and purchase a book written by Dr. Kay Thackray, she also suffers from APS. Her book is called Sticky Blood Explained. If you have any questions about this disease or need any advice, please send me a message. I hope this helps! Hugs!

Hey, what antibodies did you test positive for and how high are the titers? I have the Lupus Anticoagulant and 98 positive for the Anti Beta 2 Glycoprotein 1gG Antibodies. I have a very elevated positive pr high positive that has been persistent in my blood for over two years. I think you will have to have at least one more positive lab test before they can make a solid diagnosis of APS. Technically you need two positive lab tests at least 12 weeks apart and one documented clinical event. You already have one documented clinical event and possibly 1 positive lab result. They will probably perform one more lab test on you to confirm the diagnosis like they did in my case. In most other clotting disorders the tests don't make that much of a difference as the treatment plan will not change. But when you have APS, your INR needs to be higher and you really need to be treated by a specialist who understands this disease. I hope you find the answers you're looking for.

thanks so much jeremy... I really don't know anything at all yet. I have barely had time to think about with mom getting sick and my struggle trying to keep my SSDI. I am in appeals right now and so stressed which is why I'm pissed I haven't even had time to think about all this. I did read about my syndrome POTS, actually I have hyper pots, and a possible link to APS. I am going back to see the hema I met in the hosp but I have to pay out of pocket. But I will get more defnitive answers on wednesday, then I see the surgeon thurs about my surgery. Back in like 2010 I had a low ATIII, and I think a high B2GP... And now when I was admitted , everyone told me diff things. First the internist overseeing told me the APS was based on the lupus anticoag, then he told me it was the b2gp.. And THEN they all denied it and took that dx away. lol. It was only the hema (who I am seeing) who had all my records, including the old ones from NY. She was the one who dx me with aps. Too many things add up, like my horrific periods, memory problems, yea dizziness and stuff. I have a million issues. I was supposed to have a laparoscopy by the gyn in NY in 2010 but they cancelled due to coag stuff. And then this happened now. So, I am anxious to see this hema and get this sorted out. Plus I am getting a hysterectomy, I have problems in that area which also adds up to APS. But really I have no idea yet for sure.

I have had symptoms for 7 years. Aside from my chronic illness that I have had since childhood( Sleep disorder, pots, fainting, seizures, fibro, severe off the charts fatigue, copd, etc.) I developed the swelling under both knee's, sudden weight gain, major pain issues related to period but that lasted entire month.. like excruciating pain, rashes, bloating, vomiting, alot of vomiting, liver hemangiomas... (currently high ALT, I need to ask her about that too), blurred vision, i dunno, there's more and the swelling got worse. My feet are swollen on tops, and my wrists. But it's all too subtle I guess. But I was very unwell before all this. So, now it's just infinitely worse.

I have all mildly leaky valves, a murmur, and tachy when I am upright. So i take beta blockers. But now I have a deep thick flutter in my chest. My BP goes up when I stand but it's normal while seated. But honestly, even that is changing now on the xarelto. I don't have to track my INR, I think i would not be good at that. I am too tired to do too many appts. But you are right that I need someone very good.... and I am afraid I'm in the wrong place. I really want to go back home to NY and get to my old doctors. I'll check out that book you mentioned.. I think Dr. Hughes has a good one too?

I hope I dont have to switch meds, I will not be good at keeping up with the blood work....

Thanks so much for the info... It's late now so i don't even know what I wrote you.. lol.. but I will look back over this tomorrow!!! I have to make copies of records and get organized for my appts this week. It takes me a lot of focus to get myself together!! lol. Oh, and I can send you a message? Ok, I will do that soon!!!

thanks again! Night!!

Actually about the swelling... they are both actually swollen under the knee's (from knee and down like 5"), and then there are these bulges and minor swelling in diff area's throughout both calves. My neuro said it is to do with the veins, the ladder or something.. so they make bulges. My DVT leg is worse and always has been but right now the top of my right foot is more swollen than the bad left one. Its so weird!! I used to have very nice calves so I resent it! lolol

ok sorry... night.. lol

Yeah, you know even the liver problems can be due to the APS. When our blood is like sludge it can cause problems with any organ system in the body. Also, most people with APS only have one or the other. They will have the Lupus Anticoagulant but not the Anticardioliphin antibodies or the Anti B2GP1 antibodies. Or they will have either the ACL antibodies or the Anti B2GP1 antibodies and not the Lupus Anticoagulant. Most people who have APS will have Anticardioliphin antibodies, and a small subset of people like me will only have the Anti B2GP1 antibodies. If you have either or both, or even all three of those antibodies, you are considered to have the syndrome as long as you test positive on two separate tests at least 12 weeks apart. I hope you can find a doctor who truly understands this disease. Hugs!