Looking for any insights. After failing some easy workouts in February I went to a cardiologist who eventually diagnosed PE on a CT. Was put on Xarelto (blood thinner) about two months ago. I have continued to stay active throughout the period. I find that my current performance is very variable. Some days I’m as strong as I was pre-PE and others feel as though my lung function is still compromised. I have been experiencing some serious back discomfort as well (have been stretching, seeing a PT and starting yoga to try to address that) and continued chest pain. Based on my doctors reactions to the latter (and my internet research), it seems the continuing chest pain is normal. Does anybody in this crew have any experiences? Is what I’m going through normal? Thanks!
First off, I am seriously glad you’re here to tell us about this. PE’s are incredibly serious and it’s great it has been discovered and that you’re getting the medical help needed for it.
My first question is, do they know where the original clot originated? About 5 years ago my wife had a PE that originated from her thigh. The clot had broken free, travelled to her lung and very nearly killed her (she was 25 at the time, scary stuff). Obviously you are getting medical advice, but I’d be a bit loathe to be doing much in the way of strenuous physical activity if there is a risk of dislodging other clots and sending them into your lungs.
And in terms of the symptoms you are feeling, my understanding is that they are normal. Some of it is tied to the drugs (my wife has to inject Clexane every day and the side effects can be non-existent one day and very apparent the next) and some of it is tied to your body’s natural response to what is going on.
All I can say is, keep following your doctor’s advice, take it easy and stay safe and well!
Thanks for your regards and response. The docs can’t explain why I developed the clots (e.g. no long sedentary periods). I did experience unexplainable calf cramps just prior to all this beginning, so in retrospect I’m figuring that’s where they originated. Both docs are saying that since I’m on the blood thinner, I won’t develop further clotting and that continued exercise is fine (as long as it doesn’t have a high risk of crashing / developing internal bleeding).
Thank you awinstra for initiating this thread. I wish you well in your recovery, but also in understanding more about your body’s reaction to Pulmonary Embolism (PE) as you continue to cycle. I’ve detailed my experience below, and, after reading your experiences regarding recovery, I’m starting to wonder what complete recovery looks like.
I was hospitalized on October 9, 2020, with a suspected PE. The pain began about 4 days before that, and was absent in the mornings with the pain developing in the bottom of my left lung by around 4 pm each afternoon. In fact, the PE didn’t seem to affect my breathing as I was able to ride a few of my usual hills on the Wednesday morning, two days before the pain hit me like a Mack truck. Unfortunately, because I could climb and breathe easily on Wednesday morning, I had ruled out a PE as a possible explanation for the pain and considered an intercostal muscle strain as the cause of my discomfort. On Thursday morning, I walked with my wife up a big hill and had no trouble breathing, but the discomfort appeared to return by the afternoon once again accompanied by difficulty catching a full breath and discomfort finding a position while sitting or lying down. Sleeping that night was tolerable and I was still thinking intercostal muscle strain, but at 4 am on Friday, the pain and discomfort was nearly unbearable and it was almost impossible to breathe! My wife rushed me to the emergency where I was diagnosed with numerous small clots in both the left and right lungs. They originated from a deep vein thrombosis (DVT) in my right leg in the popliteal vein behind the knee.
I won’t go into the actual treatment and procedures for making the diagnosis as that’s pretty standard protocol usually ending with a definitive CT scan. I left the hospital after an overnight stay and am now on Xarelto as you are. Doctors are concerned that I might have Factor V Leiden, a disorder that might cause my body to form blood clots, but that test is still being processed.
So, where do I go from here. I am 70 years old and have a very strong heart according to the results of the echocardiogram given at the hospital. But my reason for searching this forum was to find other athletes who are recovering from PE and noting what their recovery looked like. I noticed, for example, that you are back on your bike. Were you off the bike for a period of time? Did you have a recovery exercise protocol that you and your doctor developed? Are you on Xarelto for 3 months? More? What does the doctor say about your continuing back discomfort?
I’m asking these questions because I am only in my fifth day from my hospital release. I haven’t had any pain since the day after the PE was diagnosed, and I am not taking any pain medication. I’m just taking Xarelto twice a day for 21 days. I see my family doctor on October 20 for a follow-up, and I hope to get more clarity on whether my body has the Factor V Leiden clotting disorder and what a recovery protocol looks like that will get me back on my bike and up the hills.
I’d certainly welcome any further insights you have since I note that your original post was in June. Once again, many thanks for starting this thread.
Thanks for your response the the OP. I hope your wife has completely recovered. I look forward to consulting with my GP on this issue, and will certainly follow his advice.
First, I hope you’re doing well, and feel free to reach out to me if you need to as there is a lot of anxiety and unknowns that come with this condition. I am glad to see a thread about DVTs/PEs on the forum. I apologize upfront if this is long-winded.
I am currently on my 13th week of recovery from a DVT that originated in my left popliteal vein and broke off and resulted in multiple PEs in both lungs. I am currently on Eiiquis 2X/day and was told to be on it for 6 months. I took off the bike for 2 weeks after diagnosis before I began again. After my overnight hospital stay, I saw a hematologist who ran several tests trying to determine the cause, including the genetic tests for Factor V Leiden, which all came back negative. I then went to talk to a vascular surgeon in week 7 who perform ultrasounds of my leg veins to determine if they were healthy, which they were. Also, in week 7, I also saw a pulmonologist who better explained to me the severity of my PE. Like you, my calf pain almost went away immediately upon getting diagnosed and on anti-coagulants. In the meantime, after the diagnosis, I walked outside for the next couple of days and after 2 weeks, off, I slowly began to perform some TR W/Os, starting with Zone1/2 for 30 minutes to 1 hour a day, being careful not to exceed a comfortable heart rate since your body needs time to heal. You’ll quickly find out that your heart rate will quickly increase due to your condition. Also, during this time, I drank ALOT of water during the day including during and after the workouts. It was so much water that I had to take pee breaks during the W/Os. I continued at this level until after week 4 then I began to increase the level of intensity and time at intensity. I also had days that I would stop the workout and/or take breaks, listening to my body. I was not doing any V02 max W/Os, as your heart rate will be significantly higher than your accustomed to seeing for a certain power level, but as my lungs heal with each passing week, I ramped up the W/O intensity. The doctors only told me to take it easy and exercise would benefit the condition, which I tend to agree with. I didn’t really follow any advice regarding training but took it slowly and to this day, it l feels like every 4 weeks, I can significantly increase my intensity and duration. I hope this helps.
As AWD notes, it is really critical that you do what you can to determine the root cause of the clot / PE.
The OP’s experience was somewhat troubling because it sounds like he never got any genetic testing to check for things like Factor V Leiden. You gotta get these tests done.
I had a DVT / PE 11 years ago…had been in a walking boot and thought it was painfully obvious that it had caused the DVT. Doc insisted on the tests and sure enough, I have Factor V Leiden. So the boot was the trigger, but the Factor V was the actual cause.
Some causes will never be found, but insist that your docs run the tests.
Your performance will eventually return to their pre-clot levels. It will take a few months maybe as many as 6 or more, but you’ll get back. I’m riding stronger now 11 years after my clots than I was then.
I’ve been off the forum since April, but am back now. Scary stuff, for sure. Since spring of 2019, I’ve been dealing with a similar situation, called CTEPH. It’s similar to a PE, but instead of one big clot, it’s lots of small, partial blockages, which have gone unnoticed and formed scar tissue. Once diagnosed in June 2019, I was put on Xarelto, which helped a lot on it’s own. Also on Adempas, which is a criminally expensive vasodilator, and then received four rounds of Balloon Pulmonary Angioplasty, the last of which was in August of this year. It has all worked out pretty well, and I feel pretty much normal. Only occasionally do I feel like I run out of wind while riding.
Anyway, I guess I don’t have a lot of directly pertinent info for you, but felt like perhaps you’d feel comforted by my success story. Hopefully I’m not claiming victory too soon! Good luck to you.
Thank you, AWD. I just got my test results for Factor V Leiden and it came back negative. I’ll be talking to my GP next week about possible causes and see what he suggests with regard to further testing beyond what I experienced in the hospital -several ultrasound tests of legs and abdominal area, chest Xray, CT scan and echocardiogram and genetic testing.
Good to know that you’re recovering and getting stronger.
Thanks, bugeye72. The CTEPH is something my doctor will need to consider. The hospitalist described my condition as similar to what you’ve described -several small clots in both lungs. I’ll bring CTEPH up with my GP next week. Tested negative for the Factor V Leiden, so we’ve still got to figure out what led to the DVT and subsequent PE.
Glad you’re doing better, and thanks again for the information.
Appreciate your response, Power13. I have had numerous tests including the Factor V Leiden genetic testing, and that came back negative. Your comment about testing is an important one, and in my follow-up visit to my GP next week, I’ll explore with him what needs to be done next. I would really like to know the cause. Thanks for the encouragement.
Glad you’re doing well eleven years beyond your initial experience with PE.
That’s great news.
Factor V hasn’t really been a major shift in lifestyle for me, other than popping my daily warfarin. A few minor dietary changes and no more road racing, but other than that, life is normal.
Sometimes they just never find the cause of a clot…I know of at least 3 people in my riding social circle that had clots and never found the cause. They are all just fine.
Good luck…if I can offer any insight, feel free to reach out.
As for me, the cause for my DVT/PE was not directly traced to a direct cause or event, which sounds like is the case for others as well. I hypothesize that a combination of heat, dehydration, caffeine overload, and sustained W/Os and rides at levels of suprathreshold and above all played a factor in my DVT/PE based upon this article:
Thanks, AWD! That was quite a significant research finding regarding the caffeine. It is especially so in my case since I drink approximately 3 cups of caffeinated coffee in the morning and one or two more for lunch. After three cups of coffee and a breakfast of granola, fruit and yogurt, I’m usually off on a ride for about two hours -20 miles with 2200 to 2500 ft of elevation gain. My caffeine intake is something I need to address with my doctor next week, but I can certainly cut down as a precaution. Incidentally, I am very diligent about hydrating, especially while riding but I do tend to sit down for an hour or so after a ride to check Strava and other resources. It would be interesting to see what other riders do after their rides.
I’m glad to hear the article was helpful. Like you, I have addressed my caffeine intake and am hoping this will reduce my chances of getting another DVT/PE in the future once I’m off my anticoagulants. I showed the study to my doctors but they dismissed it and didn’t really address it. My doctors don’t appear to be interested in the cause of the DVT/PE or preventing it in the future, but only treat the current symptoms. At the end of the day for me, I have to try to find my own answers, which may also apply to you.
For me, I am not always diligent about hydrating while I ride, so it’s something I am working on. Immediately after riding, I always have a recovery smoothie and now try to drink lots of water as well.
AWD, have you seen a hematologist yet? I know you mentioned a pulmonologist…if you haven’t, I would suggest starting there. They will be the ones most likely to help determine the “why”.
I did see a hematologist. We did numerous blood tests including genetic tests, which all turned out negative.
The thing I found out most doctors don’t have experience dealing with athletes who have DTV/PEs. We don’t typically fit into their mold of patients.
I’m happy to share information about my experience here, or feel free to PM me. Eager to hear what you learn.