It can be very overwhelming in the days, weeks and even months following initial diagnosis of a blood clot in the leg, thigh or pelvis (DVT) or lung (PE). Initial treatment generally involves extensive hospitalization; a battery of tests including blood draws, scans and X-rays; perhaps thrombolytic therapy or clot-busting drugs to break up clots inside your blood vessels; or even surgery to place a filter in the groin area or to address an underlying and more critical issue at hand. Most, if not all, patients are put on anticoagulants – or blood thinners – for some amount of time ranging from a few weeks to a lifetime. Blood thinners decrease your blood’s ability to clot. They’re used to stop blood clots from getting larger and prevent clots from forming. Blood thinners do not break up blood clots that have already formed (the body dissolves most clots with time). As time goes by, the question soon becomes just how long will I have to take blood thinners?
It was one of the first questions on my mind once I could think clearly and for me, it did not come until after I was discharged from the hospital and was sitting in my hematologist’s office for my first follow-up appointment. I was more than hesitant when I asked then and just yesterday at my 16 month follow-up appointment, how long will I have to take blood thinners?
The answer was the same then as it was yesterday – I will have to take blood thinners for the rest of my life, due Antiphospholipid Syndrome. APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them, particularly in the blood, which causes clotting. I had slim hope that something would have changed in the last year, but it did not; while APS antibodies do come and go, the risk of them developing and producing another PE are too great to ever stop taking blood thinners.
Still, others will be on blood thinners for much less time or may go on and off blood thinners at different times in their lives. In fact, there are as many variables affecting how long a patient will have to take blood thinners as there are patients with blood clots. It all depends on the individual and most importantly, the reason for the blood clots to begin with. If you don’t know why you developed a blood clot, request a panel of tests to determine if there are any genetic or autoimmune factors that may have contributed to the clot as this can be critical in determining how long you need to take blood thinners.
In patients with an easily identified and reversible cause of a deep vein thrombosis (such as a recent surgery, strictly birth control pills, etc.) 4 to 6 weeks of therapy may be sufficient. Many patients who experience a DVT or PE with no identifiable cause (unprovoked) or strictly as a result of birth control may only be on blood thinners until initial concerns with the clot are resolved or birth control is stopped. This may be a few weeks at most.
For cases in which the risk of developing new blood clots remains high (such as in patients with certain cancers or even genetic factors, pregnancy, etc.), anticoagulant therapy may need to be continued for months to years.
In the case of someone with recurring clots (genetic or autoimmune disorders or additional medical complications that may contribute to clotting), he or she may need to take blood thinners lifelong (http://preventdvt.org).
Doctors may recheck the leg and/or lungs with a Doppler imaging scan (or ultrasound) between 3 and 6 months after the initial clot. There would not be enough change to require a scan any sooner than that and keep in mind; your clots may never completely dissolve, resulting in residual scar tissue that may always be visible through medical scanning.
Most patients who have suffered from a PE and/or DVT are placed on blood thinning medications for 3-6 months as a general guideline. Again, it is of vital importance to discuss reasons for clotting with your doctor as well as your individual risk for a recurrence. Both will help to determine what your appropriate length of treatment should be.
Share your story. How long do you have to take blood thinners and for what reason? Did you expect to take blood thinners for as long as you are/did? What have you heard about length of treatment pertaining to blood thinners?
There is hope for healing and you are not alone,
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Had surgery on sept. 2014 told have clot in right lung, back and sides hurt all the time. Taking blood thinner feeling soar all the time.
I was diagnosed with PE on December 11, 2014. I was supposed to be on warfarin for only 3 months and just today I found out I will be on it an additional 3 months. So 6 months total. With all the blood tests I bruise so easily-I get swollen and have a bruise for like a week. Oh well, glad to be alive!
Going through this now. SMH!
I was diagnosed with PE in both lungs June 15th. Hospital for only 4 days luckily cause deff can’t afford it. The hardest part out of this isn’t the needles or the continuous testing.. It’s that nobody gets it. They see that I can walk and function normal(for the most part) so they don’t understand when i start crying because of how much it hurts to breathe or how I just feel so exhausted.. They see me as being fine.. And i can’t explain it to them because they think im over exaggerating since I still go to work and do the house work… I give props to anyone and everyone that has/is/will go through this and hope that you have some support in your life. Just remember ~you’re not alone~
Thank you so much for sharing your story. I too have a huge blood clot from my thigh to my leg. Thankfully it was caught before it broke off and moved anywhere else. I have been on blood thinners and out of work for four months. People don’t understand the pain or exhaustion that comes along with this condition. I’m glad to hear it’s not just me. Thanks and I pray you make a full recovery!
Hi after a surgery where I broke my leg; surgery involved a rod and some screws the surgery took about 2 hours. Approximately 7 hours later my opposite leg started to swell in the foot and as the hours went by the whole leg was as big as an elephant I describe it as and felt like cement. I was brought down for a Doppler where they found 3 veins were effected. I was lucky as well did not go to lungs. I was put on heparin released from hospital on love of for a month and now one eliquis. My leg is much better some swelling arises after a day of work but a lot better then the doctors expected. I go back in about 3 weeks for another Doppler and hopefully will be discontinuing the medication. Had surgery October 11 clot formed early next morning so be dealing with this for just over 3 months will be anxious for February 23 my next visit with thrombosis. It’s been a hard go but on the road to recovery.
Hello Elaine! Hope things are going well. I read your post. I have been researching online about blood clots. My mother formed a clot from her popliteal to her femoral vein after being immobile close to 2 weeks due to a pelvic fracture (no surgery was required for fracture). My mother was taken to the hospital (6/10/17) after her left leg got swollen. She was in the hospital for 4 days and placed on Eliquis. She has severe pain in her left leg at night and her left leg is still swollen about an inch larger than her right leg. We were told she would need to take Eliquis for 3-6 months. Next month she will have an ultrasound done to reevaluate her progress.
How long were you on blood thinners? Is your leg still swollen? Do you experience pain from clot and if you do what medication do you take to deal with it? Any advice will be appreciated.
I have been a spinal cord injury patient for over 10 years. After installing a leg brace in Dec 2016 I developed massive blood clogs in right leg. Been of medication since Jan 2017 and in July 2017 no change in blockage. I am concerned about length of time clog has been in place and length of time on blood thinners.
I went through a similar situation this year on that exact date of yours. I can’t express how much I can understand what you mean. I was very busy and 150% kind of person before I had a massive PE and the after effects and fall out was
traumatic to say the least. I hope things have improved for your over time I’m still waiting for the turn around……
On Xarelto x5 mos….SLE…APS….Severe Anemia….Fibro
Dx’d 3/15…..must have had for quite some time….only thought Hashimoto’s and Fibro which was more than enough, believe me! Clots presented in Rt. arm sent to ER…the rest is Hx. Quite concerned re: Xarelto as lifetime….but know the risks sans
Blood Thinner! Sheer Exhaustion….Too Many Meds….not great relief!
Anyone with helpful hints out there???
Blood clot diagnosed after blunt force trauma in my left leg. (DVT)
July 23 2015 – put on Xarelto (30 mg) then reduced to 20 mg.
July 19, blood clot has dissolved. Still might have to be on thinner – which doesn’t make me happy at all. Xarelto made me sick as can be; at times I thought I was dying. Fatigue, nausea, muscles aches/spasms, mornings spent spitting blood. etc. Seemed the Xarelto made me more ill than the clot.
My former post had an error – the clot was gone by Oct 19th 2015 (not July)
Wondered !!
I was in the hospital for a kidney stone removal in late August. Couldn’t remove due to size and infection. after two days of bed rest after three surgery”s I developed a severe saddle PE that nearly killed me. Put on heparin iv in hospital for three weeks until I could breathe again. Sent me home with tinzaparin innohep to self inject at home once a day in my belly at 30,000 units. Lungs feel much better now two months later but the body aches and muscle pain from blood thinner is ruining my life. Meeting with the internal medicine dr has confirmed it was a provoked PE and my treatment will only last three months. I’m glad to be alive. But the bruising and pain is really holding me back from living. Oh well only two months left and should be back to normal.
Matt
A leg clot traveled to my heart, slammed into it and broke apart. I now have had multiple clots in both lungs for 14 months and I’ve been taking Xarelto (20mg) every day. My doc says I can go off it now, but I’m not going to. I want to be absolutely sure most of this clot material dissolves (that’s if I last that long). I’ve had extreme prostrate pain and flair ups–very little fits and starts of urination–horrendous constipation that requires mag nitrate laxative, and terrible back aches where I can’t walk for more than 300 feet without collapsing. Trying to mow to lawn puts me completely out of breath in 15 minutes and I have to sit down and hyperventilate. I have water on the calves and ankles that shocks the hell out me at times–I have no idea where that comes from. I have a lump on my lest testicle the size of a large marble.
I’m a semi-famous novelist and I’m very static at a desk most of the time (have been for ten years), so now I’m starting a slow treadmill routine and flexing my legs while I write. I’m so depressed I’m at a very suicidal stage because I can’t stand all the pain and multiple maladies anymore. all of this grunting for bowel movements and coughing has started to blow a hernia out of my right groin. I’m 64 and was a body-builder most of my life.
If none of my therapy and medications don’t work. I don’t feel like living anymore. It’s not worth it. If this world of pain was too much for Robin Williams, I leaving too. There seems to be nothing left for me anymore except a legacy of books left behind. I don’t think any of you have gone through what I’ve gone through without putting a gun to your head.
I hope you are still with us Chris? 1-4-23
I’m sorry that my last post was such a downer. I do feel like living because I’m a novelist. I’ll probably need need hernia and prostrate surgery, and I sure am not looking forward to that. I agree with what was said upstream, that nobody can rightly understand what’s happened to us. Heck, it was even a blow to me. God bless and good luck to all of you!
I was hospitalized with a blood clot in both lungs (PE) January 9. I was in the hospital for 3 days and was put on Xarelto. I feel good some days and some days I just feel like something is wrong. I’m not in pain I just feel weird. I don’t know if it’s the medicine or just a symptom of the blood clots. I think I’m just having a hard time going from being okay to now having this issue. The doctors didn’t really explain much in the hospital which was very frustrating. I had to keep asking questions and I still don’t feel like I was given enough information. My doctor just kept saying I’m going to be just fine. I have a follow up with my family doctor Monday and I have a long list of questions to ask. I’m glad I found this forum.
I have a very strong feeling that Xarelto inflamed my prostrate and I’ve had great difficult with it. They must have pumped 25 to 30 bags of thinner into me over an eight day period which led to extreme prostrate pain and urination every five minutes. It got to be such a mess and cleanup for the nurses, asked to be let out a day early. At $380 a bottle per month and no insurance, my doc took pity on me and supplied with with lots of sample bottles.
Does anyone have a persistent backache that won’t allow you to walk for 200 feet without collapsing? What the heck is up to that? Has the multiple clots in both lungs resulted in this terrible ache? I feel like I’m crippled.
Hello everyone,
I am 31 year old male , about 3 weeks ago i was diagnosed with PE . small clots thanks god but cloths nonetheless . I was put through several ultrasounds in my legs and could not find any cause as to why I had a PE , I was put on Clexane for 3 days in hospital then given Xarelto .. at the 6th day of Xarelto my legs hurt like never before and my doctor took me off it and now i am clexane shots 120mg a day . I am searching for a hematologist since the doctor that was seeing me is a cardiologist and has never even bother in checking my blood levels or any underlying causes.
I wish you all the best and even tho im fighting with a bit of depression myself lets try and stay strong !!!
I’m on my second blood clot, I have factor 5 lieden, a blood clotting disorder. first blood clot, DVT, I was given xeralto in the hospital, then my doctor continued it for six months. I had a terrible time with it., blood in stool, magnified arthritic pain, swelling of the leg. Couldn’t stand it, told my doctor I wasn’t taking it anymore after the six months. Advised to stay on it, but I started taking asprin, a whole full strength one. After one year it was back to the hospital second blood clot. Now I’m on eliquis. It’s been two months and I can’t tell I’m on it. I had to give up all supplements, vitamin c and d, fish oil, but I can’t tell I’m on a thinner.
Why did you have to give up Vitamin D?
I have factor 5 Leiden too. Had DVT end of 2017 and ended up with multiple PE went on Pradaxa then a month later back in hospital with more PE so had broken through the medication that’s when they found out I have factor 5
Went on clexane injections for couple of months then rivoraxiban, that was the worst ended up back in hospital they thought I was having a heart attack
Tried marevin warfarin which wasn’t pleasant then settled on Coumadin warfarin which has been the best of all. Still have my struggles but just found out they are discontinuing Coumadin. I have to stay on for life but the thought of going back to one of the other medications is upsetting
I don’t think we have eliquis where I live.
Why did you have to give up the supplements? I find I have to take done that the warfarin depletes
I’m glad you found something that works for you
Michelle
I been on Xarelto 20 mg for 8 years now. Have issues but was told I at risk not taking the drug. Is this bad for me?
I was diagnosed with a PE about 5yrs ago in my right lounge. I believe that one was self induced as I was rubbing a certain makeup remover on my body to extract water to cut weight for a BJJ tournament. After doing that for about a week I noticed it was hard to breath and for about two days I was coughing up blood. I went to the hospital and they ran all the test and came back and said I had a PE in my lounge. They put me on blood thinners and after discharge I was on them for about 3 months. After that due to them knowing the cause they cleared me and I didn’t have to take it anymore. Fast-forward and about 5 days ago I was in the hospital because of another blood clot in both my lounges. They put me back on blood thinners (Xerlto) and ran all their test again and all test came back negative to what the cause was. Now in about 9 days I have to see my hematologist to run other blood test to see if this a genetic disorder or autoimmune disorder. Either way they are telling me I have to be on blood thinners for the rest of my life and that I can no longer do Brazilin Jujitsu (do to being a contact sport). I would like to know if I can eventually move to more natural blood thinners (green tea, Ginkgo Biloba, Vitamin B3&E, ginger, turmeric, etc)? And can I still do Brazilin Jujitsu as I love the sport and have been training for over 10yrs now?
Thank you all for sharing all your stories as it has helped me feel I am not alone!
I was diagnosed with PE in August after breaking my wrist had operation had plate and screws in ..so all new to me.. clots on both lungs…No chest pain I had pain in my left side by my ribs then arm and neck still feel the soreness round my ribs and aching pain in my back at the top….also feel my heart is there if you know what I mean …i already suffer depression so not good lol …im on rivoroxorban first 21 days 2 tablets…now one tablet for 6mths ..does anyone know if the remaining 6mth includes the first 21 days… Thank you
I am an 81 year old female and in excellent physical condition until I was diagnosed with two clots in right leg. I have bone on bone in each knee and was scheduled to have a total knee replacement two weeks after clots. This was cancelled. I am bone on bone, can barely walk, and terrified I’ll end up in a nursing home due to the fact I can’t walk across the living room. My active life changed on a dime. I am an author and can no longer write at my computer. I feel so isolated. Rita
I hope things have improved for you Rita. I read your message just now and I know it is some time since you wrote it. Wishing you warm wishes and recovery.
I am so glad to have read these posts. I had PE four years ago. Was hospitalized for 6 days and given heparin. I was then put on Xarelto for 6 months only. In July of 2017 I passed out several times and could not breathe. I was again admitted with critical PE, after they found huge clots in both lungs. I was told over and over they don’t know how I survived it. Nonetheless, I did and I’m very grateful. So now I am on Eliquis. I experience exhaustion more than normalcy and I am losing hair at a rapid pace. I’m told I’ll be on the med for life now. Does anyone experience the hair problem too?
Ism exhausted and in alot of stabbing pain. I do loose slot of hair also. It might be the stress.
I got a severe DVT that went from my left groin all the way down to my foot They tried surgery but the clot was so bad it was impossible to remove They said there was a possibility of amputation Luckily it did not come to that But I believe the clot started from having sepsis and not going to the hospital for too long not realizing it was sepsis But they started me on Warfarin which I took for a while but after 1yr I got 2 new blood clots 1 in each leg So they switched me to Xarelto It has been over 3yrs since I started taking blood thinners and my left leg still is not right I still has swelling redness or purple most of the time with veins showing darkly through my skin and this is with me taking the medication regularly I am now 34 This all started when I was 31 and am probably going to be taking this medication the rest of my life which is depressing to say the least If anyone knows of any other way to treat this DVT quicker and how to get off these blood thinners I would love to hear any advice you may have Thank you for listening and I hope to hear from you
I am on dvt number 4 in my legs. I was on warfarin for 4 years and doctor finally changed me to xarelto. I have been on it now for a year and a half. Long story short I started noticing my left leg was swelling more than usual and was very stiff and hurts. I waited about a month and a half to get it checked thinking I am on xarelto I couldn’t have another dvt. Well I do. My leg is very inflamed to the point of being told it was difficult to do the ultrasound because of the inflammation. I found out that xarelto can be affected by some medications. I now have to take lovenox injections 2 times a day for 6 weeks then be put on something else. Point to my story is be vigilant. You know your own body and if you think something’s wrong, best to get it checked out.
I got a dvt in my left leg when i was 17 and a half, it was made up of 3 smaller clots blocking behind my knee in my calf muscle.
Not sure how i got it, my boyfriend at time used to beat me up and had previously punched up my leg and it was so badly bruised that i couldnt bend it.
At time after 3 weeks of pain it got to stage that i couldnt walk at all. I went to drs and she told me i had pulled a muscle in my leg. I knew this wasnt the case so i got an appointment to see a different dr who sent me straight to hospital where i was told its a dvt.
I was on birth control pill at time so drs blamed pill for the dvt.
Then a few years later when i was about 20-21 i was getting pains in my stomach and my leg was swelling up again, i got tested and they found a blood clot in left side my abdomen, they explains this off as part of my original clot breaking off and traveling.
Ive had swelling of my legs since and had it checked but no signs of blood clots.
Now recently im ages 34, i was getting pains in my stomach and back, chest and side. I had a cough and bit of a cold, but i kept coughing and was getting really bad pains in my chest and could hardly breath and my heart was racing.
I went to a and e as drs was no help. And as id had dvt before they rushed me through gave me lots of tests and asked me lots of questions, i had blood test, ecg, and xray, a urine test, they said to me they think ive just got a bad chest infection, bit as ive had clots before they wanted to send me for a ct scan just to be sure, then after that and after 5 hours at a and e they finally told me that i have a small clot in the right lung.
Do i know how or why i keep getting clots, answer is no.
They think there must be a reason as this one is on right side this time and its been years apart.
So im on blood thinners for 6 months in alot of pain can hardly do alot and keep getting short of breath.
Cocodimal was helping but taking 30/500 at full dose for more then 5 weeks is doing more damage then help so ive got to cut back on them and hope pain doesnt go back to how it was.
I had another ct scan recently and they called me in saying looked ok but it didnt come out too good, and ny liver looked inflamed and that i may have a lump or swelling in my thyroid gland on right side.
So ive had a blood test to see if i have a thyroid problem, i have to await the results now, if isnt a thyroid problem they may have to take a biop of my neck, think that involves taking a syringe of liquid out of my neck.
They also want send me for an mri scan now, have to await a date for that.
Dr said my liver maybe inflamed from taking cocodimal so long in a row, that i should cut down and try just take paracetamol, or that where ive taking it on an empty stomach, or im not sure if it was from drinking few days before ct scan may made it inflamed or that blood thinners.
Either way it sounds like i could be worse then just a blood clot on lung, il just have to wait and find out.
But i agree it is really depressing, as now have no job, or money coming in and im not sure how i will get any money coming in so its scary.
I can hardly walk that far or do any kind normal activity’s without having to rest or getting out breath, ive spent most last month in bed, from pain, so not looking forward to cutting pain killers down either.
I had multiple PE both lungs June 2016. I was put on Warfarin and told there is a 2 year protocol as they don’t know why or how they came to be. I was in the hospital for 4 days. I have had blood tests from weekly to biweekly to monthly. I think the worst part for me was the weight gain. Most was in the beginning when they didn’t want me too active as I needed to “rest” my lungs and let them heal. I am in the home stretch of my 2 years, and am hopeful I can be done with the warfarin. I have arthritis and as we all know the meds that help with the inflammation are a no no. I would much rather spend the rest of my life taking aspirin to keep blood thin and it would also help the arthritis, but doubt I will be able to do that. While this is all frustrating, I am glad to be here to tell my story.
Had both knees replaced. Had left redone because doc put in wrong size bottom part. After surgery my knee hurt so bad. Was swollen and stabbing pains. I feel like I’ve gone backwards. I was supposed to have a small surgery and had to cancel. Now IAM limping and sometimes can’t move my leg up or over the bed with out assistance and pain pill. My hubby was in room when doc did ultrasound. He doesn’t think they were sure they actually saw a blood clot.Also he doesn’t want to pay for Eliquis if I don’t need it. Which he leans to I don’t. Doc says I do. Yes my leg is swollen and hurts and burns and sharp stabbing pain. So I wonder how do I get a definitive test?
Ok I was in for only for days in HOapital. Just for colitis. After two weeks right arm hurt where IV was in. Had a clot was on 15mg for 9 days 20 for 30 days. Had second ultra sound no clot no soreness at all. The Xarelto my primarybsays to be on for another 60 days but I feel like fainting when I work out. Do I stil have to be on it it Can I go to aspirin
Would full blown RA be considered a disorder for DVT and PE in both lungs.just happened 6/10/18 mown. On xrelto for next 9 weeks it’s
Scary. Told I am lucky to be alive
I just don’t know if I can continue taking Eliquis! It is making me so sick from nausea, dizziness, muscle tremors, leg and arm weakness, insomnia, and intense anxiety and less-intense depression. I have a popliteal DVT that extends into my calf. I started on Xarelto, which had horrible side effects for me in the beginning, got better for a couple of weeks, then came back in full force to the point I couldn’t take it and asked for the change to Eliquis. My doctor has given me the option of going to 325 mg aspirin. I am 8 weeks into 3 month treatment. I am tempted to take the aspirin option with natural supplements for anticoagulation. Is this too dangerous?
I am a Valet in Las Vegas. About two weeks ago I was running around doing my job and I started noticing a sharp pain in my side (rib cage area) . By the end of my shift the pain was extremely bad and I was having trouble catching my breath. Two days later I went to doctor and she said possible kidney stone. That night suddenly my left lower leg (mainly calf area) starting getting sore, heavy and then swelling up. The next day I went to a different doctor who gave me ultra sound and CT scans. I have a DVT that runs down my entire left leg and a PE in my right lung. He sent me to Emergency when this was discovered and believe it or not…they offered to let me go home after only being there for maybe two hours. The emergency doctor said he would give me Eliquis to start taking and if I didn’t feel I needed their observation, I could go home. Everyone I’ve told of this says they can’t believe he allowed me to leave so quickly. Any opinions from any of you?? Anyway, I’ve been feeling ok. I still have some leg swelling for over a week now but it seems to getting slightly better. The pains in my side and back from the PE have subsided some too. I’ve had a follow up with my primary doctor and she doesn’t want me going back to work yet. I’ve been going on some long walks etc… wearing a compression sock all day..and then resting my leg at night. It doesn’t hurt me to walk and I’ve even experimented with some very short 10yd jogs. Like I said…my Valet job includes some lite running and being on feet most all day. The Eliquis seems to be working as the circulation in my leg seems a little better. If my doctor will give me the release, I am thinking of going back to work in one more week. If you have any comments or opinions on my story, I’d be happy to hear.
8/26/2018, DVT lower left leg and PE, clot in right and left lung. Warferin 7.5 for less than 1 month. Had catscan 9/23/2018, PE clots GONE. Waiting to hear about DVT.
I was in the hospital for two days for a totally different reason, but after the removed the IV my arm was aching. My husband wanted me to go to an urgent care to make sure everything was ok. Turns out I have DVT and was put on Xarelto. Since they know the cause I’m not sure why the UC Dr. stated 3 months of treatment. How fast does the clot normally resolve itself? Is 90 days really necessary? Would appreciate any feedback.
Injured the back of my knee in June few weeks later went on work and vacation trips on the plane at least six times with three week span. Two weeks later my left side was stiff , left arm hurt felt terrible a d passed out at home looked like death a few times passed out and would wake up every few hours. Had no idea at the time went to the dr after a week and diagnosed with dvt. Took one Xarelto coughed up blood and took myself to the Er. Turns out not only did I have dvt but the clot went through my right valve and had snake like clots in both lungs. Xarelto saved my life took it for four months ultrasound my clots have collapsed and my lungs are healing. Side effects were anxiety but very grateful I am alive. Literally the Er dr was like you had a minor heart attack and you have snake like clots in both lungs and you lived to tell your story,
I was on eliquis for 9 months after getting a saddle PE last june 2019. I had broken my knee and tor a few ligaments and had a knee brace. After a month fighting the insurance company to get my knee fixed I ended up getting the saddle PE. It was scary I started to cough up blood and I felt very week. I went to the hospital and they said I was just coughing blood because Of allergies and they gave me some medicine. A few days later I felt really bad and coughed up more blood. Went back to the hospital and this time they decided to give me a CT scan where they found a massive saddle PE and the right side of my heart was really strained. They sent me to another hospital because they thought they would have to go in and remove it but luckily I responded well to warifin and they decided to just try that. I spent 4.5 days in the icu and 8.5 days in total at the hospital. Was very scary. After I was released I went to a cardiologist and he switched me to eliquis. I had to wait a few months to get surgery finally did in October 16 5 months after I broke my knee and ligaments. It went well but remained in blood thinners until May 7 2020 a few days ago. Kinda scared know that i will get more blood clots and a pe. Very stressful hopefully it goes well.
How are you doing? I’m starting on your path.
I’m going through this now.
I’m very upset and angry.
If you’re a Christian, please pray that Jesus heals me
I had a stroke about a month & half ago. Am on Warfarin and taking enoxaparin enjactions now.
Be doing taking both since. My belly is bruise swellening with blood blisters and like hard knots in areas like a under skin moving stone or rock. Am black and yellow and dark purple and blue all over. Not to say every week i have ti get blood work done.
And my proscription plan doesn’t cover the cost of the enjactions . i spent out of pocket 1,150. 89. On shots alone. Cannot afford it anymore. Hearr dr said will have to be on shots for 6 months.
The blood thinner isn’t the only heart meds am on. Nor the heart dr the only specialist I see .
Am only really sore on stomach only huets when touch or pression on bruises.
I am truly very very sorry to see so many people in so much pain.
Truly your.
I can’t believe it is 2020 and there is no safer alternative for Warfarin for those of us with APS. (Antiphospholipid Antibody Syndrome), and who have may have had a clot. Mine has not been completely confirmed, but suspected. I wish we could do aspirin with something instead… It bothers me to have to take this daily and adjust my life around it.
I too have APS. No other auto immune disorder to go with it. First clot 6 years ago in right calf and 2nd this February 2020 in left. In blood thinners for life. Caught both before anything serious happened. On warfarin. Glad I’m not the only one.
Hi, my story is similar to yours. My clot was in my lungs, a non predictable embolism
My husband is in Long Term Care – I have no one to help me – I feel so lonely and all the COVID-19 lockdowns exhaberate this… Heamotolgist/Pulmanoligist leave me to get on with it… I couldn’t go to work because of extra risk fro COVID-19… No money for 15 weeks… Glad to
be alive xo
Hi I’m on Eliquis since April due to Covid which caused the blood clots. In my legs and in my lungs. I never had any issues with blood clots before getting Covid. I’m suppose to be on them for 6 months. When I left the hospital after a week of being hospitalized with Covid I found a primary doctor who I’ve been seeing but was never told to see a hematologist/pulmonologist and haven’t really gotten any test yet probably won’t until close to the 6 months . I don’t know what to do?? I’m really concerned. I’ve always been healthy and use to jog before Covid and now I just started taking walks to beat this thing. I don’t want to be on blood thinners and has made me gain weight. I was in great shape how did this happen?? I’m so upset. I pray that everyone gets a miracle and a big breakthrough. Please pray for me as well. Thank you.
Hi my story started June 28/2007. I take warfarin everyday for the rest of my life. For the first 10 years I went to a lab every week for blood tests. Brutal! After 10 years my bloodwork is done anywhere from 1 week to 3 weeks. It is not stable, warfarin, thus all the inr testing. I have had a few surgeries and I develop clots quickly. I give myself needles of heparin , while getting ready for surgery. I have Lupus, and metabolic disease. I had lost my hearing ( profound hearing loss in right ear), arthritis throughout my joints. This all started when I was 44. I cannot work, hardly can walk, suffer in pain everyday. But I love my grand children and this gives me hope and desire to try to live a long life. My husband is very supportive. I am 59 and my husband is 50, we had adopted our son when I was 47. Life can be tough at times. But my son brings me joy and my adult daughters ( ages 37, 31 and 28) bring me happiness. I can still drive. I feel free when I drive. I forget I live in pain when I drive. I will be on warfarin and 17 other medications for the rest of my life. But I feel so peaceful and so loved. Perhaps slowing down has been wonderful for me in many personal ways. I wish you all the best in your journeys! Thank you
I was diagnosed with an unprovoked PE in July 2019 after passing out. I was on 30 mg Xarelto initially, then on 20 mg and finally 10 mg, all up for three years. When on 30 mg I had bleeding gums, blood in urine etc and was never told to stop taking the medication. Recently I asked my pulmonologist to change Xarelto due to an excessively dry mouth. These past three weeks, I
have been on Eliquis (5mg), and am yet to feel any change. I am not happy to be on blood thinners for the rest of my life. How safe is it to stop it, or is an unprovoked PE life threatening?
I just started this Journey, I had problems and knew what they were just not how bad, I got so 4 steps took my breath away and would have to stop catch my breath. June 28th 2023 I allowed my wife to take me to ER as I knew I wouldn’t make it to Thanksgiving. I woke up one morning and I could barely walk from throbbing pain, 3 weeks until I could walk but pain was still there. Then my breathing got short and felt like I was being waterboarded mind you I went to bed and woke up with this. So the easy stuff is I have double bi-lateral DVT’S in both legs which is obvious to people here I’m sure I also have bi-lateral PE in again both my lungs along with 40 plus smaller clots in my lungs. Legs have clots from ankle to hip. The placement of the PE are in the area most don’t live My Doctors informed me much less 2 ,a walking miracle 2 doctors stated. I’m long winded when I write but will cut myself short, I start Tuesday 18th with oncologist and Hematologist to try and find the cause , hoping for a simple answer that doesn’t include the cancer word.. I’m 54 I guess I should share, thank you for letting me speak.