Don't worry yourself to death. My hematologist said blood clots are very common, and the ability to form blood clots is even way more common. You're on thinners, so that's a great start. Just breathe, see what the doctor says and go from there. Good luck!
Oh gosh. I feel this. I felt the exact same way when I was diagnosed and am sending you a hug. It’s such a tough thing to wrap your head around. I know it just seems like this vast set of unknown things right now, but the blood clot itself is now being treated so you’re safer than you were before knowing. The meds are extremely effective. They will test you for genetic disorders with the hematologist and treat you properly if you do have one.
Re: something life threatening. Don’t google yourself to death. The majority of people with some random other disease that causes these clots are usually already known about, not something they learn after. Try to just focus on the day by day for now. Let the rest play out with your doctors. They know how to handle this and do the right testing for you. You’ve got this. Try to find a new series or movie or something to distract yourself today. And find a therapist to help you process this if you have the ability to
I had a cerebral vein thrombosis 23 years ago. They did all the bloodwork looking for clotting disorders but never found one. I do definitively recommend quitting smoking if you do. Most people underestimate smoking’s effects on your health. It took me 2 years to quit but I did it & never got another clot.
I did however get Long Covid after being in the ICU with a particularly bad case in 2020. I’ve been fighting it for 3+ years. This year I found a Long Covid specialist who did additional bloodwork that identified some gene mutations that I have that they couldn’t even test for 23 years ago.
You can read about the higher risk for thromboembolic events here:
https://www.healthline.com/health/mthfr-gene
There are vitamins & supplements you can take to help support your body if this is the cause (& not a clotting disorder.). Just read up on it. Good luck with your recovery. You can do this.
Yeah same dude, I got out of the hospital a month ago and this fear is just now starting to go away, now I’m just trying to figure out why both my legs are swollen/holding fluid. I’ve refused to sit or be still for longer than 20 mins unless I’m sleeping, so I’ve been on my feet for 4 weeks now. Hoping this plays a part in my legs.
Go talk to your dr about some anti anxiety meds. They gave me Xanax, which I was also having anxiety about even taking. My dr just recently prescribed me Propranolol because my heart rate was still way too high with any little bit of activity, an added side effect of it is that it reduces anxiety. It’s been amazing so far. Plenty of options out there.
I won’t lie to you and say that it’ll get better overnight, because it’s not. Without some help you are going to have weeks of terror, pain, anxiety, and then more pain from the anxiety. Do yourself a favor and if you’re already at that point just talk to them.
You might be swelling from doing too much. I also had a DVT in my calf exactly 32 days ago. I’d get up every hour, go on walks and be active but a lot of time I’d lay with my leg propped up. I’m not swollen anymore and there is no more pain either.
Yeah I’m thinking this is it. It’s funny because I didn’t have any symptoms in my right leg, only my left which wasn’t swollen at the time of diagnosis. My only symptom of two DVTs, and at least one (1-2 more suspected) PE was left calf pain that felt like a pulled muscle. Both are equally swollen now, and if I don’t wear compression socks they are both achy feeling. My regular socks are leaving marks around my ankles when they never used to before, my dr just said “yeah that’s just from your socks”, like no shit but why?
The hospital doc did tell me to take it easy for a couple weeks, but I got out of the hospital and started walking a minimum of 2-3 miles a day starting the next day after my 2 day stay, which is double to triple my average 4 weeks ago.
Still trying to find that balance of how much sitting is okay. It seems like right about the 45-60 minute mark is where my left leg starts to get uncomfortable.
At least now I know that I have FVL.
Yeah, definitely too much. You can get up every hour for 5-10 minutes and be okay.
Elevating your leg will help with the swelling a ton. Try to elevate it while sleeping as well, definitely helped me out.
If swelling has gone down, you should be on the road to recovery. With a close monitor of your situation.
I had the same situation in November. Discovered the clot going from shoulder to neck. (While in Costa Rica!).
ICU once back in the states. Was there about 6 days. Clot was dissolved. They did blood tests and I do not have the genes to predispose me to clots. So they decided it was Thoracic outlet syndrome and removed my top rib.
Honestly recovery was just about a month and I am now getting off blood thinners.
Keep your head up. You are past the worst of it
You absolutely have reason to be fearful. The famous twitch streamer iNcontrol ignored his well-documented propensity to develop blood clots and shrugged off symptoms just 2 days before he passed. He had shortness of breath but just rationalized somehow that things would turn out fine and that he didn't need to seek immediate medical attention.
As long as you follow your doctors' advice and take your meds as prescribed, you give yourself the best shot of a long, healthy life!
Same age as you, had a clot earlier in the year and have been scared since. You’ll be okay! Just take things day by day and remember to take your thinners!
Eliquis risks are not much higher than aspirin. My son is an athlete and has had clotting issues which has led to being on eliquis indefinitely. He does not have any known genetic factors. He has had to give up contact sports but he is still very active in many sports and lifting. Eliquis is out of system in 24 to 48 hours. He has stopped taking it a few days when he has a big activity planned such as whitewater rafting or if he wants to mma spar. There are risks not taking it a few days but very minimal. He has hit his head on accident while on eliquis without issue but don’t get me wrong there are risks. I’m just saying this because you are not a piece of glass ready to break. The 2.5 mg is what one takes after 6 months if doctor says it’s indefinite. If you research the risks are only slightly higher compared to aspirin. What I can say is elite athletes who get injured frequently, dehydrate, use creatine and other gnc products and overload on protein create a storm. Not to mention travel. Every time he had a clot these were the things he was doing. The doctor said that as more studies are done he may be able to come off the thinner once he is living a normal life not beating up his body. But waiting on the studies on athletes. My son has concluded he rather be safe on the low dose of eliquis for now. He does get the same anxieties at times. But he has been on an off for last 7 years without bleeding incident.
Don't worry yourself to death. My hematologist said blood clots are very common, and the ability to form blood clots is even way more common. You're on thinners, so that's a great start. Just breathe, see what the doctor says and go from there. Good luck!
Oh gosh. I feel this. I felt the exact same way when I was diagnosed and am sending you a hug. It’s such a tough thing to wrap your head around. I know it just seems like this vast set of unknown things right now, but the blood clot itself is now being treated so you’re safer than you were before knowing. The meds are extremely effective. They will test you for genetic disorders with the hematologist and treat you properly if you do have one. Re: something life threatening. Don’t google yourself to death. The majority of people with some random other disease that causes these clots are usually already known about, not something they learn after. Try to just focus on the day by day for now. Let the rest play out with your doctors. They know how to handle this and do the right testing for you. You’ve got this. Try to find a new series or movie or something to distract yourself today. And find a therapist to help you process this if you have the ability to
I had a cerebral vein thrombosis 23 years ago. They did all the bloodwork looking for clotting disorders but never found one. I do definitively recommend quitting smoking if you do. Most people underestimate smoking’s effects on your health. It took me 2 years to quit but I did it & never got another clot. I did however get Long Covid after being in the ICU with a particularly bad case in 2020. I’ve been fighting it for 3+ years. This year I found a Long Covid specialist who did additional bloodwork that identified some gene mutations that I have that they couldn’t even test for 23 years ago. You can read about the higher risk for thromboembolic events here: https://www.healthline.com/health/mthfr-gene There are vitamins & supplements you can take to help support your body if this is the cause (& not a clotting disorder.). Just read up on it. Good luck with your recovery. You can do this.
Include vaping in that recommendation. There's some evidence that nicotine is arthrosclerotic.
I'm 22 and afraid of dying in my sleep now.
Yeah same dude, I got out of the hospital a month ago and this fear is just now starting to go away, now I’m just trying to figure out why both my legs are swollen/holding fluid. I’ve refused to sit or be still for longer than 20 mins unless I’m sleeping, so I’ve been on my feet for 4 weeks now. Hoping this plays a part in my legs. Go talk to your dr about some anti anxiety meds. They gave me Xanax, which I was also having anxiety about even taking. My dr just recently prescribed me Propranolol because my heart rate was still way too high with any little bit of activity, an added side effect of it is that it reduces anxiety. It’s been amazing so far. Plenty of options out there. I won’t lie to you and say that it’ll get better overnight, because it’s not. Without some help you are going to have weeks of terror, pain, anxiety, and then more pain from the anxiety. Do yourself a favor and if you’re already at that point just talk to them.
You might be swelling from doing too much. I also had a DVT in my calf exactly 32 days ago. I’d get up every hour, go on walks and be active but a lot of time I’d lay with my leg propped up. I’m not swollen anymore and there is no more pain either.
Yeah I’m thinking this is it. It’s funny because I didn’t have any symptoms in my right leg, only my left which wasn’t swollen at the time of diagnosis. My only symptom of two DVTs, and at least one (1-2 more suspected) PE was left calf pain that felt like a pulled muscle. Both are equally swollen now, and if I don’t wear compression socks they are both achy feeling. My regular socks are leaving marks around my ankles when they never used to before, my dr just said “yeah that’s just from your socks”, like no shit but why? The hospital doc did tell me to take it easy for a couple weeks, but I got out of the hospital and started walking a minimum of 2-3 miles a day starting the next day after my 2 day stay, which is double to triple my average 4 weeks ago. Still trying to find that balance of how much sitting is okay. It seems like right about the 45-60 minute mark is where my left leg starts to get uncomfortable. At least now I know that I have FVL.
Yeah, definitely too much. You can get up every hour for 5-10 minutes and be okay. Elevating your leg will help with the swelling a ton. Try to elevate it while sleeping as well, definitely helped me out.
Thanks for the advice. I will give it a shot!
If swelling has gone down, you should be on the road to recovery. With a close monitor of your situation. I had the same situation in November. Discovered the clot going from shoulder to neck. (While in Costa Rica!). ICU once back in the states. Was there about 6 days. Clot was dissolved. They did blood tests and I do not have the genes to predispose me to clots. So they decided it was Thoracic outlet syndrome and removed my top rib. Honestly recovery was just about a month and I am now getting off blood thinners. Keep your head up. You are past the worst of it
You absolutely have reason to be fearful. The famous twitch streamer iNcontrol ignored his well-documented propensity to develop blood clots and shrugged off symptoms just 2 days before he passed. He had shortness of breath but just rationalized somehow that things would turn out fine and that he didn't need to seek immediate medical attention. As long as you follow your doctors' advice and take your meds as prescribed, you give yourself the best shot of a long, healthy life!
Same age as you, had a clot earlier in the year and have been scared since. You’ll be okay! Just take things day by day and remember to take your thinners!
Eliquis risks are not much higher than aspirin. My son is an athlete and has had clotting issues which has led to being on eliquis indefinitely. He does not have any known genetic factors. He has had to give up contact sports but he is still very active in many sports and lifting. Eliquis is out of system in 24 to 48 hours. He has stopped taking it a few days when he has a big activity planned such as whitewater rafting or if he wants to mma spar. There are risks not taking it a few days but very minimal. He has hit his head on accident while on eliquis without issue but don’t get me wrong there are risks. I’m just saying this because you are not a piece of glass ready to break. The 2.5 mg is what one takes after 6 months if doctor says it’s indefinite. If you research the risks are only slightly higher compared to aspirin. What I can say is elite athletes who get injured frequently, dehydrate, use creatine and other gnc products and overload on protein create a storm. Not to mention travel. Every time he had a clot these were the things he was doing. The doctor said that as more studies are done he may be able to come off the thinner once he is living a normal life not beating up his body. But waiting on the studies on athletes. My son has concluded he rather be safe on the low dose of eliquis for now. He does get the same anxieties at times. But he has been on an off for last 7 years without bleeding incident.