Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hello!
I am an active guy in his mid 40's. Well, I was active. I hope to be again soon. Here's the scoop:
In July 2009 I had rotator cuff repair surgery. It was an arthroscopic procedure and with PT and exercise, I consider it to have been largely successful. Yay for that!
However, three days after the surgery, I started feeling a walnut-sized pain in my mid-back on the right side. That night I could not sleep, and by morning I couldn't breathe deeply without it really hurting. I knew that a blood clot in the lung can kill, so I called my surgeon's office. The on-call doc directed me to go to the ER near their office so that my surgeon could keep tabs on me (I still had the sling and stitches and wrappings on from the surgery).
While in the ER, I had a breathing episode and had intense pain in that spot in my back. The ER nurse gave me morphine. I don't know if the morphine directly killed the pain or if it just made me not care thereby reducing my breathing...which reduced the pain.
After I was admitted, the hematologist who visited me ordered a whole raft of tests, many of which couldn't be done very well because my left arm was draped across my chest and was not movable. The next few days were a blur, but they put me on Lovenox and 5mg of Warfarin. I use the names Warfarin and Coumadin interchangably in this post...but it is Warfarin (generic) that I have been taking.
The nurses taught me how to self-administer the Lovenox. The things a guy will learn just to get out of the hospital and away from all those sick people and that awful food! Anyway, it took several weeks to get my INR level above 2.0. We learned that I needed a 15mg dose to get me there and keep me there. Finally I could stop the Lovenox. Yay!
But the story is only just beginning.
I wanted to start running and swimming again, but even as my shoulder healed, I could not run or swim because I was running out of breath. And I was getting tired fast, especially when the weather was hot. I live in Florida, which is usually a good thing for a guy who doesn't like the cold and snow, but the heat has made it even more difficult. I even started working out in the mornings to try to stay one step ahead of the tiredness. My hematologist insisted that Coumadin does not make you tired, but I knew something was not right.
A few words about my hematologist doc. She's great and I know she cares. But I think she may be overly cautious about my condition. Possibly because she works in a cancer center, where most of the patients they see are very elderly, very ill, and/or very out of shape.
Keep that in mind for this next part: When she first put me on Warfarin, she told me I would need to be on it for 6 to 9 months. As 6 months approached and I started asking about getting off the med, she said it would be 9 months to a year. I pushed back a bit, but relented when she said that this was "protocol". Then as 9 months approached, she started making noises that I'd have to be on it for life. What the hell happened to a year?
So at this point, I resumed my pushback. I started asking questions. Why? She said I have Mutation Type II and I have an increased chance that another PE will happen. Okay, I can understand that. But I cannot tolerate the lethargy long-term.
The Warfarin also made me anemic. About 6 months ago, the hematologist's lab took a blood test and found this out. Now I'm taking an Iron and B-complex and that has helped a lot with the lethargic feelings.
But even with this progress, I've been asking more questions. Everybody, from my GP to my GI doc, to my surgeon, and even my physical therapist (for the shoulder), was telling me how dangerous the risks of Warfarin were. My GP said that it would be advisable to get off of it as soon as reasonably possible and start a daily aspirin. When I presented this to my hematologist, she said aspirin would not be strong enough.
When I expressed my GP doc's concern about hemmorages, especially sports-related (head bumps, etc), my hematologist said there's more risk of another PE. But I think my PE was related to the surgery and the sitting around post-surgery.
So anyway, I am getting off the Warfarin at the end of this month (July 2010). It will have been one year plus about 20 days. My hematologist now says I'll need to take an aspirin every day for the rest of my life, and that's fine by me.
I have gained weight in the last year, but have lost some of it doing outdoor work around the house this spring and summer. I'm hoping that I can further increase my physical activity level (especially cardio) once I'm off the med. I'm trying to increase my time on the eliptical and treadmill now to get a head start.
My goal is to do a 5K run on Thanksgiving morning this year.
Wish me luck and I will try to come back here and post my results and progress.
I am an active guy in his mid 40's. Well, I was active. I hope to be again soon. Here's the scoop:
In July 2009 I had rotator cuff repair surgery. It was an arthroscopic procedure and with PT and exercise, I consider it to have been largely successful. Yay for that!
However, three days after the surgery, I started feeling a walnut-sized pain in my mid-back on the right side. That night I could not sleep, and by morning I couldn't breathe deeply without it really hurting. I knew that a blood clot in the lung can kill, so I called my surgeon's office. The on-call doc directed me to go to the ER near their office so that my surgeon could keep tabs on me (I still had the sling and stitches and wrappings on from the surgery).
While in the ER, I had a breathing episode and had intense pain in that spot in my back. The ER nurse gave me morphine. I don't know if the morphine directly killed the pain or if it just made me not care thereby reducing my breathing...which reduced the pain.
After I was admitted, the hematologist who visited me ordered a whole raft of tests, many of which couldn't be done very well because my left arm was draped across my chest and was not movable. The next few days were a blur, but they put me on Lovenox and 5mg of Warfarin. I use the names Warfarin and Coumadin interchangably in this post...but it is Warfarin (generic) that I have been taking.
The nurses taught me how to self-administer the Lovenox. The things a guy will learn just to get out of the hospital and away from all those sick people and that awful food! Anyway, it took several weeks to get my INR level above 2.0. We learned that I needed a 15mg dose to get me there and keep me there. Finally I could stop the Lovenox. Yay!
But the story is only just beginning.
I wanted to start running and swimming again, but even as my shoulder healed, I could not run or swim because I was running out of breath. And I was getting tired fast, especially when the weather was hot. I live in Florida, which is usually a good thing for a guy who doesn't like the cold and snow, but the heat has made it even more difficult. I even started working out in the mornings to try to stay one step ahead of the tiredness. My hematologist insisted that Coumadin does not make you tired, but I knew something was not right.
A few words about my hematologist doc. She's great and I know she cares. But I think she may be overly cautious about my condition. Possibly because she works in a cancer center, where most of the patients they see are very elderly, very ill, and/or very out of shape.
Keep that in mind for this next part: When she first put me on Warfarin, she told me I would need to be on it for 6 to 9 months. As 6 months approached and I started asking about getting off the med, she said it would be 9 months to a year. I pushed back a bit, but relented when she said that this was "protocol". Then as 9 months approached, she started making noises that I'd have to be on it for life. What the hell happened to a year?
So at this point, I resumed my pushback. I started asking questions. Why? She said I have Mutation Type II and I have an increased chance that another PE will happen. Okay, I can understand that. But I cannot tolerate the lethargy long-term.
The Warfarin also made me anemic. About 6 months ago, the hematologist's lab took a blood test and found this out. Now I'm taking an Iron and B-complex and that has helped a lot with the lethargic feelings.
But even with this progress, I've been asking more questions. Everybody, from my GP to my GI doc, to my surgeon, and even my physical therapist (for the shoulder), was telling me how dangerous the risks of Warfarin were. My GP said that it would be advisable to get off of it as soon as reasonably possible and start a daily aspirin. When I presented this to my hematologist, she said aspirin would not be strong enough.
When I expressed my GP doc's concern about hemmorages, especially sports-related (head bumps, etc), my hematologist said there's more risk of another PE. But I think my PE was related to the surgery and the sitting around post-surgery.
So anyway, I am getting off the Warfarin at the end of this month (July 2010). It will have been one year plus about 20 days. My hematologist now says I'll need to take an aspirin every day for the rest of my life, and that's fine by me.
I have gained weight in the last year, but have lost some of it doing outdoor work around the house this spring and summer. I'm hoping that I can further increase my physical activity level (especially cardio) once I'm off the med. I'm trying to increase my time on the eliptical and treadmill now to get a head start.
My goal is to do a 5K run on Thanksgiving morning this year.
Wish me luck and I will try to come back here and post my results and progress.
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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.
Best of luck!!!
Lots of interesting stuff in your post. I am your age also and very active. I am surprised you are still experiencing shortness of breath, but some people have taken over a year to get their lung capacity back, so don't give up hope. The shortness of breath probably has nothing to do with the Coumadin/Warafin and is more likely due to either your clots not fully dissolving or due to an infarction (dead lung tissue) when you had your PE. If I was still experiencing shortness of breath after a year, I would probably opt for another CT or at least a chest xray to see what was going on in the lungs. Fortuneately, I got pretty much all of my aerobic capacity back in about 2 months +/- so I have not felt the need for more tests.
The fatigue is a separate matter and many people dont have the "zip" they used to have because they feel tired all of the time from the Warafin. I do believe it, but mine seems to be primarily at night which basically means I fall asleep at night while reading. It has not adversely effected my ability to do either aerobic or endurance exercising.
As far as coming offf the Warafin, I dont know much about your Type II mutation (seem odd you had to press the doctor to tell you that you had this condition), but I would be nervous about dis-continuing the anti-coagulant with a pre-disposed condition for clotting. Obviously, you have a higher liklihood of developing a clot and you have to be dilligent about looking for symtoms of a DVT in your leg or PE symtoms. Ultimately, it comes down to what level of risk you are willing to live with. If the Warafin is diminishing your quality of life due to the side effects, then it is your decision to stop taking the medicine so you can live the life you want to live.
Personally, I may need to be on warafin for life due to Protein C deficiency. This still needs to be confirmed in a few months and I'll need to get off the Warafin for a bit to have the test re-done. My doctor is a pretty strong advocat for taking the Warafin indefinitely to keep the risks of clotting low, particularly if you have any pre-disposition for clotting or the cause for your PE is unknown. He went to Harvard, so he must be pretty smart.
I am OK if I have to take it for life and suffer from very few side efffects. I am not too concerned about the risk of bumps, bruising, bleeding, etc. Many people on this forum are very active, mountain bike, etc. and many have banged their head quite hard and had no issues. I ride my bike on the streets all the time and just try to be as careful as possible. Life must go on and we'll probably meet our demise from something other than a bledding episode.
Good luck
Robert
I knew a few things would have to be clarified. There's no way one can write as much as I did last night and have it all get transmitted and received accurately in the first go!
First, thanks for such fast responses, and for your concern.
Nathan:
My understanding of Type II mutation, particularly mine, is that I have one gene for Type II. My hematologist said if I had both genes, she would have insisted even stronger for lifetime Coumadin.
Robert:
I am not having shortness of breath today; have not had it since about August/September last year. My apologies if my original post implied that! The lethargy is another issue, however. It's sometimes very hard for me to get psyched up for physical activity, and it wasn't until just recently (April/May) that I was able to begin doing a lot more physical work on my landscape and in my vegetable garden.
I will admit that it's possible that some of it may be partly psychosomatic, but there's no denying how tired I get in the evenings regardless of that day's physical activity level. This has never been a problem for me until I began Warfarin.
And for freaking crying out loud, a simple nick while shaving can result in a two-hour episode of trying to stop the annoying slow bleed that can occur. Ugh!
Yes, I really DID have to press my doctor to tell me about Type II Mutation. And the next part is worse. After she finally said it was Type II, I asked her how I got it. She said I had it all my life. But how? It's genetic she said. So do my parents have it? One of them does, she said. I swear, getting useful information out of her was like asking for a bag of gold from a leprechaun's pot! So the next question was, what about my siblings and their children? "They probably should get tested in case they are in an accident or are about to have to have serious surgery," she finally said.
Well, thank you very much for that! And I only had to wait for about 7 months after I had been on warfarin to find this out.
My orthopedic surgeon said that extremety surgery isn't common to cause a PE, but I think my PE was probably the result of a combination of the Type II mutation, the stress of the surgery and the associated wound and pain, added with the sitting around with almost no activity for three days. Movement of my body would cause the shoulder to have searing pain, so I stopped moving. That was probably a bad choice, but what's done is done.
A few words about the post-surgery pain. Even Oxycontin would not help; I'd have to wait 45 minutes for the pain to begin to subside. Then the pain would go down just a little bit. This would last for about 30 minutes and the pain would begin to rise again. Eventually I just decided that I'd get through it without the so-called pain relievers. Laying down was out of the question, and even after returning from the hospital (post PE), I still couldn't lay down to sleep for more than an hour or two at a time.
What a terrible episode!
And Robert, regarding your concern for getting off of Coumadin. I understand that. But I feel like i'm being held back. Being held back from physical activity. An occasional water polo match. Being able to run without getting overheated. Being able to work in my garden or on my lawn mower without worrying that I could nick myself and spend the rest of the day trying to stop the slow bleed.
Others on the web have gotten off Coumadin. Some of my friends report that their friends and relatives have been taken off of Coumadin even with Type II Mutation, especially when only one gene is positive such as in my case.
I will take the daily aspirin and I will increase my activity level, both cardio and resistance training. And I'd like to find out if there are any tests that can be done at least for the first few weeks to see if any clots or PEs are forming.
But I think I have to do this; at least to try.
For me stopping the wafarin was absolutely the best decision I've made in my life. I was severely warfarin intolerant with serious side effects. I pushed pretty hard for alternatives. I could not live with the constant throwing up, fatigue, dizziness, hair loss, memory loss, extreme weight loss I suffered while on blood thinners. I weighed the risks and benefits, did my own research and sought out a natureopathic ND doctor who has been wonderful with my care and listens to me attentively. I've now been post warfarin for 6 months, post PE for 9. I am taking a baby aspirin daily as well as vitamin E which was shown in studies to help women with coagulation problems. I also meditate to destress which is extremely important I feel. I eat right, drink lots of fluids. Not getting dehydrated is key. I have resumed my normal active life. I've been snow shoeing, traveled internationally, hiked, camped, climbed. I'm not a serious athlete but it feels good to get back to a normal routine. Heat also affects me, or very strenuous activity for a prolonged time. I still have to start slow and work my stamina up. I once in awhile still feel heaviness in the chest but not pain anymore. I do struggle to breath once in awhile, but my doctor assured me it's scar tissue from the lung infarction that is still healing. (i will hit the year mark this fall from my massive multiple PE and lung infarction).
My best advice is do what feels right to you. Its your life and your decision. I am living proof that coming off warfarin or coumadin doesn't have to be a scary experience. (despite many people trying to warn me I'd regret it or suffer another PE) I wish you the best of luck with your progress.
Your doctor not disclosing your genetic testing results to you is a joke. I would find another doctor if I were you.
Good luck.
Robert
I'm almost three years out from my PE and suffered no permanent damage, which is amazing, considering I had massive PEs in both lungs. But I do know that extreme cold and really hot weather still affect my lungs. I think sometimes what we perceive are warfarin side effects are actually side effects from the PE trauma. This is just my opinion of course.
I think your hematologist is concerned because she is well aware that so many people drop dead from PEs, not necessarily because she works with old, sick and very out of shape (not sure what that has to do with anything, but ok)people. PEs don't care if you're young, old, male, female, an athlete or an average Joe.
A genetic disposition to clotting doesn't automatically mean you must stay on warfarin for life. Your hematologist is just making a recommendation. It's up to you what you want to do with the recommendation. I've had two separate clotting episodes so my hematologist recommended staying on warfarin for life. For me, I didn't even think twice about it. I never want to have another PE again so I'll take whatever precautions I can to prevent that.
It really is about weighing risk and personal choice when it comes to whether or not one should continue warfarin for life.
If you ever do decide to go back on warfarin long term, it is totally manageable, even for active people. At first, I thought I had to limit myself, but the longer I've been on it, the more confident and comfortable I am. I do everything I did before being on warfarin. I shave, I bike, use knives, I walk barefoot, I play sports. Sometimes, I cut myself and it's not that big of a deal. I live a very normal, happy life. I agree with Robert, life had to go on, so why get bogged down in all the limitations.
I have a goal of trying to run a fast marathon this fall and anemia would make it hard to do.
Thanks for bringing up this topic.
Feel free to message me if you have any questions.
Take care, Nancy
Thank you all for your contributions. Your experiences and opinions are valuable to me.
RMB: I don't want to sound mean-spirited here, but I am a perceptive person, and that's just how it is. I definitely believe that when a doctor works with the same type of patient day in and day out for years and years on end, it WILL eventually affect that doctor's attitude and behavior toward patients of that condition, class, or situation. A new doctor, not so much. But doctors are people. And they will be impacted over time, and this will affect their decisioins and the advice they give (or have to be coaxed to give) to their patients. "This is what you do, A, then B, then C. And that's just the way it is." I am just saying, "Hey wait a minute, I'm an intelligent person. I'm the one you're telling to take this drug, and I'm paying at least some of the bill. You have to tell me 'why' or I'm not going to play your game!"
Robert: Yes, I was very disappointed that my hematologist had to be pried at for information. I do believe that this is partly due to cultural differences (nothing too serious or I would have dropped her), but also due to the types of patients they get.
Ariel, Caroline, and Todd, thank you all for your comments.
Yes, Todd if you are getting tired, you may want to have your hematologist test your blood for iron and/or B complex deficiency. This turned out to be a pretty serious one for me. I now take the Integra Plus (Iron plus several B vitamins) and a simple B-12 caplet. I go 2 consecutive days with the Integra Plus and 1 day with the B-12. One thing to be mindful of is that the iron in the Integra Plus will make your stool dark; this should not be confused with one of the signs of internal bleeding that they tell Coumadin users to be wary of. At the end of the "B-12 only" day (assuming that you take your vitamins in the morning), the stool will lighten up in color. That is one reason I do it that way, so that I will always have that secondary crosscheck.
Incidentally, I suspect that my Iron shortfall came about due to the Coumadin and that my B shortfall came on because I can't take a Men's One-a-Day, which I used to do before my PE (but can't take with Coumadin because Men's One-a-Day contains vitamin K). In retrospect, I think it's very possible that even under NORMAL circumstances (pre-PE) I would have been B deficient without a Men's One-a-Day. I just would never have known because I've been taking that for a few years now.
Nancy: I had never heard of this "D-Diner" test, nor had I heard of lovenox being used for long car or plane trips. I am comfortable self-administering the Lovenox injections if it becomes necessary. The actual stab isn't painful at all (probably due to it being injected into my belly-fat, haha!), it's just the end of the "plunger's" travel when it hurts. Then it hurts like hell for about 30-45 minutes! Nonetheless, I shall inquire.
Have a great rest of the weekend, folks!
Frankly, the fact that you had to press your doctor about the mutation issue would have prompted me to fire her.
I'm not doubting your perception abilities, And I am totally on board with understanding why it's recommended you take meds, understanding Type II Mutation, what the risks are of taking meds or not taking meds, etc, so you can make an informed decision. I actually agree with you on this.
There's nothing mean spirited about your post, so I'm not sure why you'd think that. It's okay to banter, opine and / or disagree.
RMB: Yes, we are on the same wavelength; thanks!
And you got close to my point; the one I thought might rub some feathers the wrong way (because I don't really know anybody here).
But here, I'll just blurt it out: As a hematologist/oncologist, it can be argued that she almost exclusively works with sick people. Some of them are not mobile, and many will not outlive their cancer.
On the other hand, GP's, OB/GYN's, Opthamologists, DPT's, orthopedic docs, and DDS's at least get to see "some" healthy people from time to time, like when they come in for their checkups or to address a non-chronic issue such as my rotator cuff injury.
So I have to ask the question: Why was my hematologist the only one saying that I have to stay on Coumadin for life? EVERYBODY else says I should get off it if I can.
So naturally, I try to consider the different angles and apply some logic to this. Is it maybe a matter of the perspective of a hematologist who works mostly with people who's blood thinner concerns are the LEAST of their worries?
I think this is most certainly possible. Or maybe I'm reading too much into it; which would not be the first time that's happened!
This conversation with all of you has been informative. I may ask my GP for a referral to a new hematologist, if for nothing else but to get a second opinioin regarding stopping Coumadin.
Or, maybe, she just has a different opinion from all the other docs. That happens too.
After my third clotting episode, I was OK with becoming a lifer. The ER docs told me, my primary told me, my asthma guy told me, my hemo told me ... EVERYONE said I would be on for life. But then I ran into a cardiologist who said I should do more research before committing to life on warfarin. Was she right? Wrong? Misinformed? I dunno ... but I do know that docs sometimes disagree. What seems obvious to one may seem quite sketchy to another.
Anyway, by all means get a second opinion if it'll help you. In the long run YOU have to make a decision that you're happy with and that you can live with ... not the docs.
I see an Internist for my regular health stuff, a GI for my ulcerative colitis and an OBGYN for the female stuff and I also see an Endocronologist occassionally for my thyroid and none have expressed an over concern that I was on warfarin for life. So, I dunno, except they know me as a patient, including my clotting history.
I think a second opinion is a great idea, particularly if you're struggling.