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.
It's been three years since my first DVT and I haven't posted much here but I wanted to share my story in the hope it will save some grief.
While running one pleasant summer day in 2011, I felt a sharp pain in my left calf. OK, I had just pushed myself a little too hard. It'll go away if I just take it easy for a few days.
No, in the middle of the night I woke up in severe pain. DVT number one had arrived. Five more were to follow soon.
I was put on Coumadin, which never stabilized in nine months (INR hit 7.3 at one time). Plus I was miserable on it, so my doctors said let's just take you off it since you're active, running, lifting weights, etc.
Working in a clinical laboratory, I could check my blood work frequently. All the warning signs were there: D-Dimer so high it was out of the analyzer's range. Antithrombin at 1/3 normal values. C Reactive Protein rapidly elevating.
July 6, 2012, something is wrong. That night at work, ironically in a trauma center's Blood Bank department, I collapse due to a massive pulmonary embolism.
The ER crew rushed down to help me but, as two doctors later told me, they've seen this so many times before they didn't think anything could be done.
After two minutes without air, I reached up at the rapidly fading light and said "No!" At that point they moved in and got me to the ER.
The pulmonary embolism was triggered by two issues: A bleeding disorder and a genetic clotting disorder, Prothrombin Gene Mutation, which generally isn't something a person has to worry about. Combine it with another issue, such as certain types of birth control for instance, and it's deadly.
So, what to do?
Lovenox became my best friend for the next nine months. Large bruises on my abdomen from injecting myself twice a day became the norm.
Then, while on Lovenox, DVT seven, eight and nine showed up.
At this point, my doctors are in panic mode. We decided to go with Xarelto. I loved it. No checking INR twice a week or injections.
Then DVT 10 hits.
I got referred to a surgeon that specializes in clot removal and he said "No." Surgical intervention was too risky until this situation was under control.
The prescription was for a FlexiTouch whole leg foot pump which massages the foot from the bottom up, increasing blood flow. It was expensive but worth it.
My point with this post is that one shouldn't just settle for the traditional Coumadin line (It's the only option, I was told).
If it's not working for you there are other options.
The warning about drugs like Xarelto not being reversible is also BS.
If you have a major bleed, a blood transfusion is more effective than the vitamin k shots or plasma transfusions they use for someone on Coumadin.
If Coumadin works for you, great. It's a cheap drug that's easy to take.
But there are other options. Don't let your doctor tell you otherwise,
Have a great week,
Larry
While running one pleasant summer day in 2011, I felt a sharp pain in my left calf. OK, I had just pushed myself a little too hard. It'll go away if I just take it easy for a few days.
No, in the middle of the night I woke up in severe pain. DVT number one had arrived. Five more were to follow soon.
I was put on Coumadin, which never stabilized in nine months (INR hit 7.3 at one time). Plus I was miserable on it, so my doctors said let's just take you off it since you're active, running, lifting weights, etc.
Working in a clinical laboratory, I could check my blood work frequently. All the warning signs were there: D-Dimer so high it was out of the analyzer's range. Antithrombin at 1/3 normal values. C Reactive Protein rapidly elevating.
July 6, 2012, something is wrong. That night at work, ironically in a trauma center's Blood Bank department, I collapse due to a massive pulmonary embolism.
The ER crew rushed down to help me but, as two doctors later told me, they've seen this so many times before they didn't think anything could be done.
After two minutes without air, I reached up at the rapidly fading light and said "No!" At that point they moved in and got me to the ER.
The pulmonary embolism was triggered by two issues: A bleeding disorder and a genetic clotting disorder, Prothrombin Gene Mutation, which generally isn't something a person has to worry about. Combine it with another issue, such as certain types of birth control for instance, and it's deadly.
So, what to do?
Lovenox became my best friend for the next nine months. Large bruises on my abdomen from injecting myself twice a day became the norm.
Then, while on Lovenox, DVT seven, eight and nine showed up.
At this point, my doctors are in panic mode. We decided to go with Xarelto. I loved it. No checking INR twice a week or injections.
Then DVT 10 hits.
I got referred to a surgeon that specializes in clot removal and he said "No." Surgical intervention was too risky until this situation was under control.
The prescription was for a FlexiTouch whole leg foot pump which massages the foot from the bottom up, increasing blood flow. It was expensive but worth it.
My point with this post is that one shouldn't just settle for the traditional Coumadin line (It's the only option, I was told).
If it's not working for you there are other options.
The warning about drugs like Xarelto not being reversible is also BS.
If you have a major bleed, a blood transfusion is more effective than the vitamin k shots or plasma transfusions they use for someone on Coumadin.
If Coumadin works for you, great. It's a cheap drug that's easy to take.
But there are other options. Don't let your doctor tell you otherwise,
Have a great week,
Larry
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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'm not super pro-warfarin or anything, but honestly most people who have that much trouble on it are found to be non-compliant, either by forgetting doses or not keeping a consistent diet and lifestyle. Yes, there are other options, and especially some of the new anticoagulants are being more and more commonly used, but they haven't been out long enough to know what truly long-term use might do. Lovenox as long-term treatment is not generally practical for most people and it's usually only done for people who basically have no other option. And all of those options can be cost-prohibitive for many patients.
In any case, all of these options apparently have failed for you, which makes you a far cry from the ordinary anticoagulation patient. I think that most people should try to make the anticoagulation which their doctor chooses for them work to the best of their abilities. Warfarin does kind of have a learning curve, and it can be frustrating figuring out which dose is appropriate for each individual. But I had a similar in the beginning experience to yours in that the first time I was on warfarin was a nine-month nightmare (I didn't have problems getting too high, but my INR would continually bottom out every time we thought we had a good dose, and we kept having to increase it). But after I clotted a second time, I went back on warfarin and never had a bit of problem with it. Yes, there are other options if necessary, and it's good for patients to know that, but I also don't think people should necessarily ask to jump to another anticoagulant just because they might find warfarin frustrating in the beginning.
Many people here and on the PE group take Xarelto. We talk about the options quite a bit here.
I think people, particularly long term anticoagulant users, are educating themselves. And we're seeing newly diagnosed folks more and more being prescribed Xarelto. Me personally, I'm not taking it until it has been out longer and we know more about it long term. But that's me, and my choice. Of course, if there was a situation where all other anticoagulants were failing me, then yeah, what choice would I have but to take it.
If Xarelto is working to help you to not continue to throw clots while anticoagulated, that's freakin' awesome. I'm glad you were able to find help with that because how scary is that.
After 17 months, several ultra-sounds and scans of my chest, my heart Doctor took me off the Xarelto. He told me it is common to come off Xarelto after a period of time. He put me on a different med that dilates the blood vessels. Fantastic for my COPD.
Considering that you have already have 10 DVTs raises the questions what is actually causing them. Have all possible clotting factors been rules out. There are also actually some genetic mutations that determine the rate of fibrinolysis (i.e.the rate which clots are dissolved), but I do not think these are always ruled out. All mammals have two main types of so called plasminogen activators", the tissue-type (tPA) and urokinase-type (uPA), that dissolve clots. These have their inhibitors that are "turned on" when the clot has been dissolved, as otherwise there would be serious risk of bleeding. However, some people have a mutation that causes these inhibitors to be too strong and thus the lysis of the clots is thus far too slow. Have you been tested for this?
Finally, out of curiosity, what measures have been taken to prevent DVT number 11. Some people that are at very high risk of recurrence are on warfarin and have their therapeutic range of 3-4, but above 4 the risk of bleeding is greatly increased.