Pulmonary Embolism

[jenniferlynne76]

Hi all,

Finally back home after a five day hospital stay. My husband took me to the ER on Friday night after what I thought was just a really bad POTS flare, marked by chest pain and shortness of breath, turned out to be one heck of a pulmonary embolism. I am VERY lucky I got there when I did.

It was later discovered that I also have a clot in my left leg. Now, since I've been on birth control for 20 years they are chalking all of this up to use of hormonal contraceptives for so long. I do wonder through, any of you out there with dysautonomia also have a clotting disorder or similar experience?

I am now on Coumadin and will be following up with my neurologist who is thinking there very well may be some connection here, as I have always been really healthy until this last six months or so, and now I have a POTS diagnosis AND this.

No more birth control pills for me, so I have a follow up appointment in a few weeks for a pap with my OB-GYN and think I will ask about tubal ligation at the same time. My neurologist has agreed with my husband's and my decision not to have children (if we change our minds there is always adoption) and now that hormonal pills are off the table, I think it is time. Plus, who knows what else we may find as we begin exploring clotting issues, etc.?

Anyone out there have experience with this? The pulmonary embolisms, DVTs, or decision to go the tubal ligation route?

Thanks in advance,

Jen

[AllAboutPeace]

Oh, wow, Jen, thankfully you trusted your gut and didn't wait that one out at home!. Very scary! Glad to hear you are back home and now on meds to manage it.

[badhbt]

Hmm that is interesting. You are really young for a DVT/PE. I did have a d-dimer blood test come back elevated, which can mean that you have a clot somewhere. They looked for a PE, but everything was negative.

I bet that was really scary. It is so hard to know that you have something else going on with POTS symptoms. SO glad you went to the hospital when you did.

The only thing I can think of is maybe you got the blood clot from pooling? I don't know, or maybe there is a underlying clotting issue?

[boymommy3]

I have also had a postive d-dimer two years ago when my doc first began to suspect POTS. Everything was clear for me just like badhbt, though.

I was told that those test are very sensitive and come back positive often when there isn't anything there. However, because of the seriousness of the issue, they are obligated to follow through.

So glad you are ok!

[Joann]

Hey Jen,

Glad you are home and hope you are feeling better. I asked a few of my more "experienced" Potsie friends about this and a couple of replies. One said she had heard of this happening with some POTS and MCAS patients. Another said to check out aps. The web link she gave for that was apsfa.org

Several people said they either had it happen to them or some one else.

So it is good your neurologist is checking it out. By the way I just got my bill for my first visit to the Cleveland Clinic, the part insurance didn't cover. Uggghhhh! I don't know when I will show that to my husband, maybe after the second testing visit. LOL

Jen so glad you are home, hope they figure this out soon. Maybe this will give you the reason you have POTS!

[Guest Alex]

Wow Jen,

glad to hear you're home feeling better. But most importantly I'm glad that you trusted your instincts and went to the hospital.

I sure hope your dr will be able to help you get to the bottom of this.

I'll keep my fingers crossed that you'll be able to get some much needed answers and that you'll regain your health soon.

Take good care of yourself.

Hugs,

Alex

[jenniferlynne76]

Thanks everyone for weighing in. I really am SO lucky I went in when I did and didn't just chalk it up to a POTS flare. They ran the d-dimer which came back positive, then did the CT and there it was: clear as day.

I go back to the neurologist Wednesday. He is most concerned right now with me staying as active as possible to prevent additional pooling (since that could have caused the clots). But he also wants me resting/no real work for st least two weeks. So for the time being we are upping my mestinon by one dose (from 3x a day to 4) and he wants me on the treadmill for 5-10 minutes at a time working back up to 10k steps a day. I'm sure he'll have more to talk through with me when I see him Wednesday.

Went for my first Coumadin check this morning and everything is great. Holding steady at 2.7. So I will go back on Monday morning and we will go from there.

I'm committed to using the spirometer, walking, taking meds, etc. so hopefully I will continue to feel better and we will have even more answers soon.

Thanks again!

Jen

[tpapik]

yea maybe theres an underlying blood clotting disorder. thats the first thing my doc did after pregnancy was a chest angio to look for blood clot . since it was bed rest for so long. glad your on coumadin now , keep up with the treatment! yay for heparin drips and coumadin glad your better.

[ChrissyT]

JenniferLynne76, I’ve gone through an extensive DVT in left leg that turned into extensive PE and nearly died 9 years ago at age 28. Was on blood thinners about 9 months and was taken off them for about 1.5 years until I got another DVT 6 years ago, so am now on blood thinners for life.

I had a miscarriage 4 years ago and decided at that point with being on blood thinners forever and never finding the true cause (but have 9 people in 4 generations with DVT and/or PE) that it was best for me to have a tubal ligation 3 years ago. Plus I don’t like the idea of heparin injections causing bruising/bleeding from my stomach 👎 Not a sexy and baby making feeling!! Even though I’ve always wanted my own children, I struggle to think of how it would be to pass these conditions on or how I’d have the energy to raise them. I’m thankfully with a man who didn’t want any more kids anyway, so it worked out.

I have hypermobile Ehlers Danlos Syndrome, POTS, Gastroparesis (GP), and likely MCAS (all of these except the GP are recent findings; I’ve had GP for 8 years at least). I’ve wondered if DVT/PE could have come about from blood pooling in POTS. There’s also some indications I’ve read that MCAS can cause clotting issues. Mine was chalked up to smoking and being on birth control 10 years, plus family history. But I’m still researching and not totally convinced of the cause...

Were you able to find any answers as to the cause of your DVT/PE? I hope you’ve recovered, rebounded, and flourished since your post several years ago!’

[KristaKupcake]

Jen I’m so glad they figured this out when they did so you can be treated for PE/DVT. I am currently on Xarelto for small PE bilaterally in my lungs. We don’t know how long they’ve been there because I didn’t get the typical symptoms associated with PE. It was by fluke that we found them (7 ER visits never found anything wrong but my family doctor ordered a CT and bam - PE diagnosis). 

I’ve been on blood thinners since mid September now (this year). I have probable POTS (the cardiologist did not want to ‘offically’ diagnose me - yet). Thankfully I do not have the DVT but I do have very sluggish blood flow on my legs (noted on the ultrasound I had on them). I try to walk a bit each day and try not to stay sitting or laying down too long to keep my blood flowing. Slow blood flow can put you at a higher risk for DVT. 

There is a a history of blood clots in the women on my mom’s side of the family and I was traveling in August across the country. So I had 2 risk factors. I have a hormonal IUD for birth control / period control as well but it is progesterone-only (no estrogen which is the greater risk factor for DVT’s). I’ve thought about tubal ligation but I’m scared to have any surgical procedures now that I’m dealing with POTS/dysautonomia symptoms. The IUD is not pleasant but it was the best option for me to reduce hormones and also help lessen my periods / prevent pregnancy. Of course, pregnancy isn’t much of an issue now that I’m not having sex since this illness started :(. 

 

Krista

[blizzard2014]

I'm glad you made it through. I also had a DVT/PE back in 2012. Please make sure they test you for all of the genetic and acquired blood clotting disorders. A lot of us with autonomic dysfunction also have a condition called (Antiphospholipid Antibody Syndrome) AKA "Hughes Syndrome." It is a common condition that goes along with dysautonomia. I have APS and also the Factor 2 mutation. They will want to take you off of blood thinners after 6 months, even if you have a clotting disorder. Because what they call your clot is unprovoked, but it happened while you were on contraceptives. They will try and blame it on the contraceptives only. It's just strange how you were on contraceptives for so many years and only now had your first PE. It could be that APS has finally shown up, or that it has finally become active. If you have APS, I would stay on blood thinners for life. A lot of people with unprovoked blood clots will have more once they stop taking blood thinners, this is true in some of my online friends who tested negative for all blood clotting disorders. You can still come off of blood thinners after six months, just make sure they bring you in for a D-Dimer test a few weeks after you stop blood thinners. Sometimes if you have a negative D-Dimer test a few weeks after discontinuing blood thinners, it can mean that you will be good to remain off of thinners. But, at least you will know what signs to look out for in the future.

It is a personal choice really as to whether or not you want to remain on blood thinners for life. No doctor can force you do take them, or to come off of them. You need to do some online research and come up with your own conclusion on whether or not you want to stay on them. I was so scared after my clots that I would fight to the death if someone ever tried to take my blood thinners from me lol. If you haven't already done so, please look into getting at least thigh high medical grade compression stalking's. I wore 20/30 MMhg ones, but they recommend 30/40 MMhg ones for at least six months following a DVT. Some doctors suggest to use them for up to two years. This is to aid in the prevention of long term complications from DVT. Some people can develop a condition called "Post Thrombotic Syndrome!" I was able to reduce the size of my foot (it was the size of a small football after DVT) back down to normal within 2 days of using compression socks. I believe they helped me from getting worse PTS. I still have chronic pain in my right leg, but I had an extensive DVT from foot to groin, and I went undiagnosed for 5 months. To the point that I could no longer walk. So, I did some permanent damage and have left over pieces of blood clots behind my knee, but I believe the compression socks saved my leg from chronic swelling. I have the pain, but it takes 5 hours of being on my feet non-stop before my calf and ankle swell. Hang in there. You are through the worst. You are already on blood thinners and the clots are dissolving as we speak. Just make sure to get your INR checked every week so that it remains in range. As long as it is in range you will be fine. Don't forget to read about Vitamin K. it is the enemy of Warfarin and you need to make some dietary adjustments while on Warfarin. If you choose to eat foods rich in Vitamin K, you can do so safely, you just need to eat the same amounts each day. Here are some links for you to read that will help you and some good forums to go to.

This site saved my life after my PE. This site also has a section for DVT as well: https://www.dailystrength.org/group/pulmonary-embolism

Here is a link to the various blood clotting disorders: https://my.clevelandclinic.org/health/diseases/16788-blood-clotting-disorders-hypercoagulable-states

Here is a site that will answer all of your questions about Hughes Syndrome. Just tell them you are in the process of being tested, as they are strict on only adding members who have APS: https://healthunlocked.com/hughes-syndrome

Here is another forum with information for all people with blood clots http://www.clotconnect.org/

This organization spreads awareness about blood clots and has hundreds of patient stories and testimonials. You can add yours too if you like: https://www.stoptheclot.org/about-clots/blood-clot-info/

I hope all of this helps. What I find really frustrating about being diagnosed with blood clots is the sheer lack of support and patient information the hospital leaves us with when we are discharged. I had to dig around online for months for answers and to be able to connect with other survivors. The single best place for support is Daily Strength, both forums, the DVT and PE. Some of the members have been through the ringer. One of them blacked out on the way to her car and had to crawl back into the house after she came to and barely survived. She is a warrior and very helpful. Her name on there is RMB. You will get so much support and advice on that forum. They saved my life on there. There is another very knowledgeable member on there from Canada. His name is Dero. I bring these two members up because both of them tested negative for all clotting disorders and both of them had new blood clots a few weeks after being taken off of blood thinners. Poor Dero has a very badly damaged right leg, but when they discontinued his blood thinners after six months, his left leg became damaged. I bring this up so that you make sure you watch out for the signs if you are taken off of your blood thinners after 6 months. 

[blizzard2014]

On ‎11‎/‎14‎/‎2018 at 3:23 PM, ChrissyT said:

JenniferLynne76, I’ve gone through an extensive DVT in left leg that turned into extensive PE and nearly died 9 years ago at age 28. Was on blood thinners about 9 months and was taken off them for about 1.5 years until I got another DVT 6 years ago, so am now on blood thinners for life.

I had a miscarriage 4 years ago and decided at that point with being on blood thinners forever and never finding the true cause (but have 9 people in 4 generations with DVT and/or PE) that it was best for me to have a tubal ligation 3 years ago. Plus I don’t like the idea of heparin injections causing bruising/bleeding from my stomach 👎 Not a sexy and baby making feeling!! Even though I’ve always wanted my own children, I struggle to think of how it would be to pass these conditions on or how I’d have the energy to raise them. I’m thankfully with a man who didn’t want any more kids anyway, so it worked out.

I have hypermobile Ehlers Danlos Syndrome, POTS, Gastroparesis (GP), and likely MCAS (all of these except the GP are recent findings; I’ve had GP for 8 years at least). I’ve wondered if DVT/PE could have come about from blood pooling in POTS. There’s also some indications I’ve read that MCAS can cause clotting issues. Mine was chalked up to smoking and being on birth control 10 years, plus family history. But I’m still researching and not totally convinced of the cause...

Were you able to find any answers as to the cause of your DVT/PE? I hope you’ve recovered, rebounded, and flourished since your post several years ago!’

A lot of us with Autoimmune disorders also have a condition called APS - Antiphospholipid Antibody Syndrome. You should ask if your Doctor can test you for this. If you had Migraines as a teenager and balance problems, and memory fog, this all goes along with APS "Hughes Syndrome!"