Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
25 year old female here. Hospitalized with Axillary DVT 2 months ago. Given 5 mg coumadin and lovenox injections twice daily for 3 days before being sent home.
Been in the process of getting a primary care set up (I lost my insurance just 3 weeks before being hospitalized and had to start from scratch). I was given a doctor who would temporarily care for me while I got set up with my primary care. Well, this doctor decided recently that I am a liability, and will no longer prescribe me. I ran out of warfarin about 5 days ago. I see my new primary care in 4 days.
The clot in my axillary vein never went away. It fragmented into my lung in the hospital, and continues to do so. My arm is perpetually swollen and painful, with tingly hands and tender pain in my chest. But now, I have that same sensation in my groin. Swollen pain and pressure radiating down into my inner thigh, and shooting up into my abdomen and lower back (kidneys maybe? I had extreme back pain in the hospital but they kept just giving me pain medication for it).
The warfarin never seemed to make a difference. While on it, getting my PT/INR, even when I was bumped up to 7 mg my INR was still 1.
I don't know where these clots came from, nor why they continue to grow worse. I am 26, never smoked, done drugs, don't drink. I eat very well and exercised 4 times a week up until this happened. Not on birth control pills (I'm allergic!). The ER doctor suggested I get genetic testing in a few months. My mother, however, has a history of blood clots, but has been tested for all conditions and was negative. Her blood clots were always considered a consequence of her lifestyle choices rather than due to a condition.
I'm very confused, and I'm scared. I have an Iliac DVT and an axillary DVT, and am in a lot of pain. After getting dumped by my previous doctor (and honestly, not even being well cared for by her), I am very nervous about what will happen with my new doctor. I very much so need medication... just a few days off of warfarin and my blood has gone rogue. It's like the warfarin didn't really effect it, but just made it angry.
Been in the process of getting a primary care set up (I lost my insurance just 3 weeks before being hospitalized and had to start from scratch). I was given a doctor who would temporarily care for me while I got set up with my primary care. Well, this doctor decided recently that I am a liability, and will no longer prescribe me. I ran out of warfarin about 5 days ago. I see my new primary care in 4 days.
The clot in my axillary vein never went away. It fragmented into my lung in the hospital, and continues to do so. My arm is perpetually swollen and painful, with tingly hands and tender pain in my chest. But now, I have that same sensation in my groin. Swollen pain and pressure radiating down into my inner thigh, and shooting up into my abdomen and lower back (kidneys maybe? I had extreme back pain in the hospital but they kept just giving me pain medication for it).
The warfarin never seemed to make a difference. While on it, getting my PT/INR, even when I was bumped up to 7 mg my INR was still 1.
I don't know where these clots came from, nor why they continue to grow worse. I am 26, never smoked, done drugs, don't drink. I eat very well and exercised 4 times a week up until this happened. Not on birth control pills (I'm allergic!). The ER doctor suggested I get genetic testing in a few months. My mother, however, has a history of blood clots, but has been tested for all conditions and was negative. Her blood clots were always considered a consequence of her lifestyle choices rather than due to a condition.
I'm very confused, and I'm scared. I have an Iliac DVT and an axillary DVT, and am in a lot of pain. After getting dumped by my previous doctor (and honestly, not even being well cared for by her), I am very nervous about what will happen with my new doctor. I very much so need medication... just a few days off of warfarin and my blood has gone rogue. It's like the warfarin didn't really effect it, but just made it angry.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I was under the impression that if you did go to the ER, they have to treat you. I believe that's been the practice of ER's in the US.
It doesn't matter at the moment why or how you got the clots. It only matters that you get medication right away. You can deal with the why's later on.
I just got clot #3 three weeks ago and my blood has been tested twice for blood disorders and I have none. I do have A negative blood which is just 6% of the population but don't know for sure if that's a contributing factor.
Anyway, get yourself to the ER. You need meds NOW!
So get aggressive about treatment and take control. You really have to take charge about your situation and if that means getting with a doctor ASAP to get meds.
I imagine that the clots are getting worse because you really haven't been treated at all. If your INR has never been above 1, you aren't getting any benefit from the medication and your clots will continue to grow, break off, cause pain, etc. 7mg isn't a very high dose (some people need 18mg or 20mg!) and your doc should have been more aggressive about getting your INR to get moving. If the warfarin doesn't work, as @rmb said, there are other options for anticoagulants. It's ridiculous that your previous doctor couldn't figure out what to do with your INR and then decided somehow that YOU are the liability! Makes me grit my teeth in frustration for you.
Yes, go to the ER and get checked out from head to toe. Explain the situation and make sure they address everything going on with you. Ask that the records be forwarded to your new doc.
I'm not sure when your mom was last tested for clotting disorders, but if it was more than 10 years ago, it might be worth a retest. There are new things discovered all the time about clotting and they know about more disorders now than they did even a few years ago. Once you get all this sorted out with the medication and start getting some REAL treatment, you might consider checking in with a hematologist to see if he/she can shed some light on this situation.
Hang in there! Please go to the ER and get yourself treated and checked out. You need to get back on the Lovenox ASAP (or one of the other anticoagulants that takes effect immediately).
So sorry this is happening to you. Keep us posted!
I know that in the meantime, WHY I'm getting these clots isn't terribly relevant... but it's just eating at me! I'm so curious... and it does drive me up a wall when people ask questions and I have no answers for them. People ask why and how this happened, what it means for me, how it feels... and I can only barely answer those questions.
Because I have a doctor's appointment on Tuesday, I've been trying to tough it out and not go to the ER. I'm fairly certain they will keep me like last time. They like to monitor. I can't afford time away from work. They kept me for 3 days last time, and my boss forced me to stay home for the rest of that week (I tried to go in after getting discharged...). Losing a week of work took away half of my biweekly paycheck. That was big... I can't do that again.
One factor a friend mentioned is that for all I know, I'll arrive at the doctors office and he will tell me to get my butt to the ER, in which case all this waiting was for nothing.
I'm surprised that 7 mg is not alot! I remember reading that once someone reaches the 9 or 10 mg range that it's too much and considered "resistant"... I feel like I'm already learning things being here!
Even when I was released from the hospital my INR was only at 1.8, with a PT of 12.3. I was only given the lovenox injections in the hospital and was not prescribed them for home use.
2 weeks out from the hospital I got my blood checked and when I saw the results, I knew immediately that I needed the lovenox back. My PT/INR had tanked. But even getting my doctor to LOOK at the labs, was a disaster. I was able to view my labs online, and knew there was a problem. I called the office, got told that if my labs were available, then they'd surely been viewed. Got brushed off. Would call day after day getting everything from "I'm sure your labs are fine" to "I don't see any labwork for you, have you been here before?" to "You need to make an appointment". I would go in IN PERSON and get deer in headlights looks. Finally, 2 weeks after I had my blood drawn, I was told I definitely needed to up the dosage, to 7 mg. After a week on 7 mg, I got blood drawn again, and within 2 days could see my labs and could tell that they were way too low. Called the doctor and got the same run around for several days, before going in for answers. To my surprise, the doctor and an insurance person in the office sat me down and explained the liability of treating me because they don't accept my insurance, and that it is not a good idea for her to be prescribing me anymore.
So essentially for 2 months I have been non-therapeutic and my medication has been borderline useless. Not only did the clot in my axillary vein get worse, one in my iliac vein now started.
My lungs are not happy. Sporadically over these past 2 months I've coughed up blood (doctor wasn't concerned). The iliac clot has now made my kidneys fairly unhappy. I peed blood this morning.
After being made to feel like I am not a priority by my last doctor, I'm definitely nervous about my new doctor. Anxious. Don't want to get my hopes up in case this doctor does not care either. It's hard to take my condition seriously when doctor's don't. Makes me feel like my pain and anxiety over these clots is just me overreacting. And it really shouldn't be that way. It's not right.
If I understand correctly, you have had two DVT, one in arm (axillary vein) and the other one in the groin (iliac vein). It is clear that you are prone to clot, what ever that may be the cause.
What I suggest to do is
1) Go to the ER. You should describe everything in detail there, but in my mind the first immediate objective is to find out whether you have internal bleeding and what is causing it. If you have some type of internal bleeding, then anticoagulant treatment will increase it, and thus important to stop the bleeding.
2) Find another doctor, that has good track record dealing with DVT/PE. Try to get some specialist, e.g. vascular or hemo. Members on this forum can probably give advidce on good doctors for your area, and you can also post on www.dvtforum.com
3) I believe that one of the problem is how to fund the medical care (Im from Europe and the healtcare is more or less for free). Im not sure how to solve that issue, but perhaps other members on this forum can provide advice.
Good luck and please go to ER to solve have a look at your health problems. Especially, check out soon cause of your bleeding. Where Im from, they take at regualr intervals blood samples to check out haemoglobin during warfarin treatment, that can be helpful to find out if internal bleeding takes place or not, but Im not sure if they do so elsewhere (e.g. US)
I'm surprised that you are still alive.
Instead of posting here you should have gone to the ER like some of us have advised you to do.
Quite frankly, I'm sorry to say but you've made your situation worse.
I have learned over the past 13 years and 3 separate DVT events that I have to be the one to save my own life. Several doctors have made mistakes because they are overworked and don't give enough time to every patient so I have to be my own advocate.
People have told you to go to the ER for a LIFE THREATENING condition and yet you have refused. Maybe you aren't aware that this is a LIFE THREATENING condition. Well, I have now told you that.
You having bleeding isn't something which should be brushed off, although to be honest, when someone's on anticoagulants there will sometimes be more blood than we might otherwise see. For instance, you say you have sporadically coughed up blood - well is that from coughing deep in your chest and you've got a lot of blood coming out, or is it that you've been coughing and just a little bit of blood came out? The first is a problem, the latter very well might be you just burst a small blood vessel when coughing and it's not a big deal. Same with the peeing blood (though if you're doing that, even if it's nothing extreme, you need to deal with it), but a bad bladder infection can cause some bleeding, which would be worse on anticoagulants, but that's an easily resolved problem with antibiotics at least. But again if you're bleeding every time and/or have either a large quantity of blood or clots in your urine, then that's likely a lot bigger issue.
The problem right now is that you are kind of making guesses/suppositions about what's going on, scaring yourself, but you have no real way of knowing for certain what some of this stuff is alone. You need a medical professional to examine and treat you. I do understand feeling frustrated by how you've been treated by the doctors up until now, but many of us had to keep looking until we found a doctor who did their job properly. As Brooklin said, advocate for yourself, or if you're not feeling up to it, then get a parent or someone to help you. Because obviously, just from the perspective of the clot or clots you have, you need to be properly treated by someone who knows how to manage warfarin. And 7mg isn't a very high dose, so yes, what someone else said is absolutely the truth - it wasn't a high enough dose for you so it was essentially wasted medication. The first time I took warfarin I needed 15 mg daily and still barely stayed around 2.0. Now I only need 10 mg daily to stay therapeutic, but if a doctor tried to limit me to 7 daily, my INR would probably be around 1, just like yours has apparently been.
Try to also think of a possible hospital stay this way - a few days getting proper treatment and your medications figured out and your blood therapeutic, while it might be difficult financially, is still in the end better than getting massive PE's and needing more aggressive treatment and a longer hospital stay, not to mention a far, far more difficult recovery that can take months to years. And that's an optimistic viewpoint of that possible scenario. Please don't put off seeking treatment.
For someone whose had very little interaction with the doctors, she seems to have quite a bit of knowledge about DVT's.
She also knew that she was sub-therapeutic. This is my 3rd clot and that terminology didn't come to me until at least clot #2.
Curious.
She's pretty young to be going through this, so she's likely feeling overwhelmed and doesn't really know how to navigate the whole thing. And maybe due to her lack of insurance she wasn't as aggressive as she needed to be to get proper treatment, and perhaps why she seems to be guessing about some of her symptoms. I hope she gets it sorted out.
I was simply guessing about the iliac. After the hospital doctors suggested this is genetic, by having the same sensations in my hip as I had in my arm when I was hospitalized, my first instinct is to guess a new clot. I don't know what else it could be. For all I know I have something totally unrelated, but it seems to be a fair guess.
I only know about terminology regarding DVT because my mother was hospitalized for chronic clots starting when I was a little girl, not to mention I have scoured the internet browsing forums, reading articles, trying to fill my head with more knowledge so that I can feel better about this scenario. I'm entirely overwhelmed.
The doctor's office turned me away today, because the doctor's name is not on my insurance card (nobody's name is on it! I don't have a primary care yet... that's the whole point, I'm trying to get one!) and they suggested I see a clinic.
I've exhausted all attempts to not have to go to the hospital, and failed. I'll have to go tonight. I'm having massive anxiety over it.