Hi! I am new to this message board...

[Willow7733]

On December 20th, I went to the ER and was diagnosed with several blood clots from my left calf, up to an inch from myheart, and several large clots in my lungs. They were surprised I lived though it, it was so bad. Was in the hospital for over a month.

I am on Warfarin for life. I was first put on Xeralto, but they ran every test known for cancer (they were certain that is what was causing all the clots), but in the end, they found it was caused by a complication from lupus. So was switched to Warfarin.

I know they told me my PEs could take a while to dissolve on their own, but these days every chest pain I have I start to panic. Are the clots moving?? I was so lucky the first time, has my luck run out? When I breathe in I get a sharp pain that is lasting longer than when it first started. Should I be worried??? Is this normal?

[Hidden]

Poor you, that is a horrid thing to happen. Yes, the anxiety is perfectly normal; we all suffer from it. I do think our consultants don't always take into account how anxious we can be. The clots will go, in their own sweet time, and you will get used to life on Warfarin. But when you go for your INR tests, do tell the nurse how anxious you feel - they may be able to reassure you.

[Keithff]

One of the big things to remember is elevation. Two bricks under the bottom legs of your bed will give you the help you need to prevent more DVTs

[SpeedyH]

The way it was explained to me was that the medication does not get rid of the clots, it prevents them getting any bigger or new ones forming which gives your own body the chance to break down the existing clots over time. Because of the meds, it is unlikely that the clots will break off or cause a problem, they will just get smaller. The clots that are in your lungs probably moved through your heart to get there and clots have probably been circulating in your blood for a long time before you were diagnosed. I also experienced greater chest pains after starting the medication but it improved over time. Mention it at your next INR test and seek help before if you get very breathless again or the pain becomes bad.

[Willow7733]

Also, my left leg really swelled up while I was at the hospital. To around 4 times it’s normal size. I find now the knee of that leg unstable. Like the ligaments have been stretched. If I move a certain way the knee joint hurts. Does that make sense???

My leg with the blood clots in it...

[tracey13 in reply to Willow7733]

I was put on tinzarprin injections to break my clots up. My last DVR was from my groin to my knee . Took absolutely weeks to get my levels down The warfarin was so high does it made me feel so nausea

Tracey

[amhayllar]

Totally makes sense, my right DVT leg is bigger than my left leg. My knee joint occasionally feels unstable but I also have bursitis on the knee cap, all that kneeling down. I started on warfarin when I first got my clots, I actually enjoyed seeing the nurse and having a check, INR levels going up and down. I'm now on Apixaban for life. My advice like the others is share your worries and anxieties, I wish there was some medical counselling because even 12 years on I could do with getting all the frustrations out. Be kind to yourself, trust your gut and ask ask ask...take care

[Tofino5]

It would be best to check in with your doctor about the pain. When I had PE’s (which were misdiagnosed at the time), the pain lasted quite a while. But check in with your doc to make sure you are on track in your recovery.

[tracey13]

Sorry to hear this no wonder you feel anxious.

Ive had three separate dvts in my right thigh. Every one of them felt different it's absolutely made me paranoid .I worry when I get funny feeling in my leg.

Ive had a few scares in the past and had them checked out.

I'm on rivoxoban for life I've got factor 5 Leiden blood clotting abnormality.

Tracey

[pingman777]

Hello Willow7733. So , I had the samething 5 years ago. Was admitted to hospital as the clot broke off and into my Lungs. They put clot busting drugs into me for 2 days. I left the hospital after a week with a swollen leg. I know you probably feel scared but it will get better. For me, I am active. I was back on my road bike about 2 months later. I still have a swollen leg so I just learn to live with it . I cycle about 3500km a year and still play golf. If you are an active person , I would encourage you get back out there as exercise helps with the bloodflow

[Willow7733 in reply to pingman777]

I wish they could have given me the clot busting drugs. It would have been a bit less of a worry for me. But the clots were so many and so large, if any pieces broke off, they said my chances of survival would be very small. I have to wait until my body reabsorbs them. It will be a long process. I used to be very active. I love to do sports in the summer and winter here. Thinking of starting back at the gym this weekend, but the last two days I have felt off. I have really bad balance lately and I get dizzy off and on all day.

[Hidden]

Hi, never had PE but the clot in my thigh, took 6 months to dissolve and the pain stayed for a year. Even now after 4 years, still get the odd twinge and can still feel lumps when I press the area. Take care

[Willow7733 in reply to Hidden]

They told me last Thursday that I am looking at around 2 years for these cots to dissolve and symptoms to continue beyond that. I was shocked! Maybe they don’t tell you all this when you just have it to not make you depressed and worry? I am glad I didn’t know this four months ago. I would have been so angry that this happened.

[Hidden]

It's hard, when they are not honest with you. I was told, I would probably always have pain in that leg and I do now and again. It's been over 4 years now and every time I get the ache, I think, on no, not again. But I am on thinners for life. I did get the injection in stomach got 3 days, which break the clot down a bit quicker. Hope you start to feel better over time, it's hard, but I think you do sort of learn to live with the pain and because I expect them to happen, don't panic so much. Don't ever want to go through that again ☹️ take care

[Willow7733 in reply to Hidden]

Maybe they just don’t really know? We are all in this together. One day at time time....🤷‍♀️