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Hello! I had a PE 4 days after my 22nd birthday so I really sympathise with feeling like you have no time (i.e. life expectancy) and also the whole 'this is the rest of my life' thing. I ended up developing PTSD because the whole situation was a massive shock for me and I felt like my life as a competitive sportswoman was over.

The best thing you can do is find a therapist who specialises in trauma, people often think you can't get PTSD from medical emergencies but you 100% can. Overcoming Traumatic Stress (2nd ed.) was a book I found really helpful whilst waiting for therapy through the NHS. Please be patient with yourself, I know it can be frustrating to feel like you've changed as a person but I promise that one day you will feel like you've got your life back.

Finally, I would say to just be open and honest with the people who love you - PTSD and recovering from a PE is an absolute trip and surrounding yourself with people who have your best interests (who don't enable you) at heart is hugely beneficial. Good luck and I hope you're feeling better!

your issue isn't clotting, it's OCD and anxiety, and I don't know that we're the right people to help you with that. We can give you all the reassurances in the world but your OCD/anxiety will say "yeah but what about...". Have you tried posting in r/OCD or r/anxiety?

If you're not on hormonal birth control now and you don't have any genetic factors and you don't have other risk factors (as listed on the sidebar) you're unlikely to clot. your doctor felt you were well enough to come off anticoagulants.

you know what the symptoms of a PE are, and you know what they aren't. you remember what symptoms you experienced when you got your PE, that's what you need to watch for. you know that finger pain is not a symptom of a clot so remind yourself of that in a positive reassuring way. Remind yourself that you are okay, you are safe, and you know how to get help if anything does happen.

What some folks do is they get an inexpensive pulseox device to monitor their blood oxygen and reassure themselves they are getting enough oxygen.

At this point you probably have some PtSD from your experience and your therapist is the best person to help you work thru that along with your other anxiety disorders.

I do box breathing for anxiety, it can help with mild to moderate anxiety, I don't know if it helps panic. you might also benefit from a mind-body practice like yoga or t'ai chi or qigong. they are not a quick fix, it's something you have to practice regularly.

For what it's worth I have anxiety disorder as well, been dealing with it off and on most of my life. I do know it has a life of its own and does what it wants, logic be damned. I did a lot of medication, a lot of therapy, and do a lot of yoga and meditation. It still rears its ugly head now and again.

How scary! I'm so glad you are here. I had my PE a little over a year ago. Massive bilateral, no known cause (maybe birth control). I don't know what the future holds, so I can't tell you that the worst is over, but I can say that you are getting treatment, so bad things are very unlikely to happen right now. I'm guessing that your doctor will have you on anticoagulants for life. That can be both good and bad. Coping is hard. Research about clotting helps me a lot. Contributing to this board helps. You have every right to be scared. Fear is normal, especially at first. You have gone through something terrible. Trust me when I say that I really do understand. You may want to look into getting yourself a pulse ox for those times that you are afraid. you can check to see that your oxygen is ok. That you are really breathing. I know that has helped me. You may also want to look into genetic testing for your children. If they are factor V also, it would be good to know early. Your daughter is likely at least heterozygous (a carrier).

Did your doctors find any clots in your legs? Were you sick at all before this? You really will be ok. You have a loving family to support you through this. You will get better. Feel free to ask us any questions or make any comments you need to!

There are some smartphone apps out there which require the user to check-in every morning, otherwise the app will notify specific people that the user hasn't checked in that day. I can't really vouch for any, but I highly recommend looking into those as an option.

Here's one for iOS I've been using, since I live alone, have a dog, and there's a free version: https://apps.apple.com/us/app/snug-safety/id1122758716 edit: I just tested this the other day and it worked like a charm, texts were sent out about 15 minutes after the deadline.

 

This obviously won't help you help them immediately (an emergency beacon of some sort would be better in that case), but could help if they fail to wake up, or something like that. There are relatively cheap options for smartphone paired emergency buttons, like this one on Amazon: https://www.amazon.com/Wearsafe-Personal-Emergency-Response-Lifetime/dp/B07KPWT4TB/

> ..I think every little pain in my chest is a PE..

Get a [pulse oximeter] (http://www.amazon.com/Santamedical-Deluxe-Finger-Pulse-Oximeter/dp/B000ORVXPA/ref=sr_1_9?m=A8YXBQ7YB5YFQ&s=hpc&ie=UTF8&qid=1420598121&sr=1-9&keywords=santamedical+pulse+oximeter) and ask your hematologist what readings you should look out for, for example I've been advised to go to the ER if my oxygen saturation falls to 93% and has been accompanied by other symptoms.

32/F Currently on Pradaxa. Last July I survived a massive bi-lateral PE which also resulted in a pulmonary infarction, this was followed by a second smaller PE a week later. Having a finger pulse-ox gave me much needed peace of mind during the healing process.

Feel free to PM any questions or if you just want to chat/vent :)

I found out just over two years ago (February 2016) that I am heterozygous for FVL after having 2xDVT August 2015. I'm a lifer on warfarin. My hematologist has told me that if I end up in a less travel heavy job or a job that isn't overly sedentary, then there is a possibility that I could switch to an aspirin therapy. However, that is not likely. I haven't had too many negative side effects since going on warfarin (sensitive to cold, a bit of fatigue), so I have no interest for the time being in switching to a newer anticoagulant.

Link to the FVL resources via Stop The Clot/National Blood Clot Alliance: https://www.stoptheclot.org/factor-v-leiden.htm I share their links often since they were a great resource for me when I was initially diagnosed with clots and FVL. Everything else I could find targeted a much older demographic (I was 29 at initial diagnosis).

The book that I recommend pretty heavily for anxiety is How to Stop Worrying and Start Living by Dale Carnegie. The mass market paper back version is very very cost efficient ($3-ish), your local used book store probably has it for under $5, and your local library might have it as well. For a long time, I had a tendency to obsess over "What could happen" rather than focusing on what has happened and what is most likely to happen. That book helped me quite a bit. https://www.amazon.com/How-Stop-Worrying-Start-Living/dp/0671035975/ref=sr_1_1?ie=UTF8&qid=1525808063&sr=8-1&keywords=dale+carnegie+how+to+stop+worrying+and+start+living

In general, forwardseat nailed it.

So, for some perspective. After I was diagnosed, my Mom and older sister got checked. It turns out, they both have the same variation that I do. Care to guess who the only to have a clot is? (This guy). I'm the only male that we know of that has it. They were both on hormonal birth control for many years, and my sister's doctor had her switch to a non-hormonal option. Personally, I'm a former smoker. I smoked cigarettes (.5-1 pack a month) for around 2 years ten years prior to getting clots. Beyond that, I used to be an occasional cigar or pipe smoker (talking maybe 6 cigars per year, pipe once or twice a month). Now? I'm firmly a non-smoker. I miss pipes and cigars on the patio or while listening to a new album, but I can live without them.

Control your risk factors and pay attention to your body.

As far as how to cope if you end up with a clot, my best answer is one day at a time. You're ahead of the game now, since you're already researching clots and clotting disorders. When I had my diagnosis, I thought clots only impacted people that regularly took trans-Atlantic flights and the bedridden elderly...not 29 year old strength athletes. The most terrifying part was the unknown. However, then I stumbled onto StopTheClot.org and BloodClotRecovery.net . So, I learned more. The more I learned, the less anxious and terrified I was. Over time, I settled into a new normal...and my new normal is pretty amazing. I'm doing so much stuff that I never would have dreamed of. I'm finishing my degree (had an 8 year hiatus), applying to grad school, exploring new hobbies (photography & target shooting), trying new food, and traveling as much as my work schedule, and budget, will allow. So, take that trip, go to that concert, go for that run/hike/etc, and enjoy life!

All that being said, live your life! I used getting clots and learning of my clotting disorder as a way to remove my head from my ass. It was a wake up call that we each get one life to live (unless if you believe in reincarnation, etc).

I took my measurements and took to Amazon! A lot of them are nude or black with lace at the top.

EDIT: Here are some links to my favorites /u/satumaatango , and congratulations on your big day!!

https://www.amazon.com/dp/B000WFWL0U/ref=cm_sw_r_cp_awd_KszIwbA0S3C9V


https://www.amazon.com/dp/B002SKUPVE/ref=cm_sw_r_cp_awd_luzIwb3QGYBH6

Here are some links for the product in the above comment for different countries:

Amazon Smile Link: pulse ox


|Country|Link|Charity Links|
|:-----------|:------------|:------------|
|USA|smile.amazon.com|EFF|
|Germany|www.amazon.de||
|India|www.amazon.in||




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I wear Jobst brand "Active Wear' knee high, available from Amazon: https://www.amazon.com/gp/aw/d/B004IV75CS

The Active Wear line is thicker, more like a sports sock than the thin dress sock material.

If your husband is still on thinners the knee high will be less expensive than thigh high. Check with your doc for specifics (although mine couldn't really give me any guidance on type).

Hey. We're mutant siblings. I'm on Xaralto, so it isn't too bad (I haven't had my blood checked in a few months, actually). [Here] (http://www.amazon.com/Medical-Alert-Stainless-Cuff-Bracelet/dp/B004TMHTRC/ref=sr_1_8?s=hpc&ie=UTF8&qid=1410881510&sr=1-8&keywords=medical+alert+bracelets+coumadin) is the bracelet I was wearing before I switched to Xaralto. I haven't updated it yet (although I need to).