Life After A Pulmonary Embolism And Factor V Leiden Diagnosis - A Story Of Survival And Recovery

My medical alert ID from when I was on warfarin
My medical alert ID from when I was on warfarin

The Importance Of Lifelong Healing After Diagnosis

Pulmonary embolisms, blood clots in the lungs, are potentially fatal. They damage your lungs and potentially your heart. It is chilling to know that it is believed that up to 30% of people with pulmonary embolisms die before ever even seeking a diagnosis. This knowledge as well as the bodily damage that is done takes a toll on the survivor. Survivors are also often saddled with a new diagnosis of Factor V Leiden or another thrombophilia (blood clotting condition). In my other hubs I have covered a number of topics relating to healing and coping with the aftermath of these conditions. I have not covered a very important topic, what is it like to be alive years down the road with a history of pulmonary embolism or a thrombophilia diagnosis. This hub will cover those topics. I will share with you what my experiences have been since I made my full recovery. If this is your first reading of any of my clotting hubs, I suggest that you go back and read some of my hubs about recovery as I will not cover those here. This hub will be focussed on the recent years rather than those closer to my diagnosis.

Healing never ends. You are not abnormal if you find yourself dealing with your clots in some manner for the rest of your life. It is a healthy thing to make sure that you are safe and clot free. here is my story.

In The Beginning...

Let me start with July 18, 2008. That is the date that I now consider my second birthday. It is very important to me as July 18 is my parent's anniversary as well as the date that I entered the emergency room and was diagnosed with multiple, massive, bilateral, pulmonary emboli. I had been unwell for weeks. I was relieved to have a diagnosis and to be taken seriously. I was in the hospital for close to two weeks. During this time I had a leg ultrasound that showed no clots, a trans thoracic echocardiogram that showed no heart damage and no patent foramen oval (hole in the heart) that clots could pass through. I was placed on a heparin drip. For the first few days I was bedridden. I missed washing my hair independently. I was hooked onto an EKG and often had nurses order me back to bed because my heart rate was spiking to 148 when I was trying to change my hospital gown. I asked for a hematology consult on the recommendation of a wonderful nurse. My new hematologist diagnosed me with heterozygous Factor V Leiden. I started warfarin anticoagulation therapy and found out I would be on it for at least a year. I learned how to give myself low molecular weight heparins. I went home and slept, and slept and slept. Then slowly I healed. Two years later I could finally say I was back where I was.

Medical Care After A Pulmonary Embolism Changes

After my pulmonary embolism I began to carry my CT scans everywhere. Doctors needed to know what my body had been through. I still have the file. It no longer travels with me. I will be keeping the full hospital record and scans. I have no idea if I will ever need to share the history with any more doctors, but if I do, I am ready.

Whenever I fill out medical history forms I have to figure out where pulmonary embolism fits in. I have to be able to tell doctors and nurses when I had my clots, what my treatment was, that I have Factor V Leiden, and that I am no longer on warfarin and why I am not on warfarin. I hear a lot of misinformation from the medical community regarding my clots and what treatment I should be on now. I have done my research and I am confident in what I am doing but it worries me none the less. A lot of the worry is that they may not know how to treat me. That is a shocking revelation.

Clotting has interesting impacts on a survivors future medical care. Birth control is now a big deal as it can cause clots. Pregnancy also can cause clots. Simple surgery is also a concern. Having my sinuses cleared out will need special equipment to keep my blood moving while I am under anesthesia. I worry about what I need to do know and do whenever I have to start a new medication, have a procedure done, or consider changes to my body.

I think about possible clots when major health events happen. When H1N1 was going around a few years back, many people who were hospitalized were developing unusual blood clots. Alarms went off in my head. I immediately got a pneumonia shot and the seasonal flu shot to try to protect myself. I can't risk having new blood clots. They are dangerous and they may mean having to take anticoagulation for life.

Mental Health And Knowing You Are Mortal

The fear of clots and death are very strong when you are first diagnosed. To those that are still healing, it does get better. Note that I didn't tell you that it goes away. I worry about clots. It is always there sitting quietly in the back of my mind.

  • I had an odd little lump on my shin yesterday. It turned out it was a bruise. I was worried it was a clot for about an hour.
  • I always have to stop every 2 hours while traveling. Even with the stops I wonder...
  • I had sinus surgery. The clotting risk worried me. I had to be cleared by my hematologist before my surgery. The surgery team used pneumatic leg cuffs to keep my blood moving while I was sedated.
  • I have to get up and walk in the middle of college lectures. A 5 hour class is risky.

As you can see, it doesn't stop. You will know you are mortal. This has some benefits. I am more confident about myself now. I survived. My body survived. I also have regrets that 2 years were stolen from me.

What About Physical Health And Lasting Health Problems After A Pulmonary Embolism

My body is very healthy. I don't see any residual effects from the clots. I wonder sometimes in a CT scan would show any scar tissue in my lungs. After all, they collapsed from lack of oxygen due to the clots.

I am often asked by readers how I feel now. I have to say great. It took a lot of patience but July 18, 2008 is behind me. I am off of warfarin. I don't see my hematologist for routine check ins anymore. I have had no additional clots. My breathing is fine. My heart rate is back where it was before the clots.

You will heal. Four years out life is looking good.

Factor V Leiden, A History Of Pulmonary Embolism, And "Disability" Status

I don't feel disabled. I don't look disabled. One of the odd things about me now is that legally I have a disability. When I fly, sit, work, go to school I have to have access to liquids and be able to move around. When I fly I work with a disability coordinator to get a seat with leg room or an aisle so I can move in flight easily. It floored me the first time I was told that "we will accommodate your disability". To prevent future clots make sure that you keep moving. If you need disability accommodations, ask. It feels odd being "disabled" but the label has been a huge help in helping me to take care of my body so that it lasts a bit longer.

Here To Help

If you have any questions about my life now, please share in the comments or contact me through Hubpages. I am happy to let you know what life is like once you heal. If I missed anything I want to make sure that it gets included, so just give me a heads up.

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Comments 50 comments

Larry Wall 4 years ago

I sympathize with what you are having to face every day. I had a blood clot in my arm while I was in the hospital. That is nowhere close to being as serious as what you went through, but the thought of that clot moving upward was scary. I gave myself blood thinner shots for a week, and had it check by a specialist every two weeks for about two months. Fortunately, I had good insurance then and it did not cost me anything.

I wish you well and pray you do not have any future complications.


Lwelch profile image

Lwelch 4 years ago from USA Author

I am glad that your clot didn't move. That would be scary. I also know that clots can cause damage to the veins that they are in. I hope that you escaped lasting effects from the clot.

Thank you for your thoughts!


Larry Wall 4 years ago

Thank you. I did. My only problem is growing old.


moonlake profile image

moonlake 4 years ago from America

My brother has Factor V Leiden so far he is doing fine. My niece has it and has had problems with blood clots in her arm. I was tested, don't have it. Sorry to hear you went through this but so glad your ok. Voted Up.


Lwelch profile image

Lwelch 4 years ago from USA Author

I am glad that they have been lucky so far! Arm clots are unusual but I have met 1 person who had them. So your niece isn't alone. A huge number of people have FVL. It was probably an adaptation to stop bleeding in childbirth, or, as new research is suggesting, to prevent sepsis.

I don't recommend getting clots to anyone. I gained a lot from my experiences but I am trying hard to prevent a repeat.

Thanks for stopping by!


veronica 4 years ago

i am 4 weeks since being diagnosed with pe in my lungs.......i've been a nervous wreck........some days i feel okay and some days i hurt so bad i want to cry......well i do cry....my father suffered from pe also and has been on coumadin for many many years, so i might be on it for life....i worry a lot about the pain i be feeling inside sometimes, i mean i've told my dr, but he said not to worry about it, unless i feel like i can't breath like i had an elephant on my chest.....but that's easier said than done, every little pain i feel i start to panic......and worry.......i think what you have shared is great, gives me hope and it's good to know the pain doesn't just go away quickly...thanx for sharing!


Lwelch profile image

Lwelch 4 years ago from USA Author

If you haven't read my other hubs on PE recover, stop by and check them out. They have a lot more details on recovery.

It does sound like thrombophilia runs in your family. It runs in mine but my mom has never clotted. I was the unlucky one. I chose not to do warfarin for life. It was a "reasonable" risk for me to be off of it. I will be on anticoagulation though if my risk goes up (surgery, pregnancy, long haul flight...). If you do choose to stay on it, the great news is that it is old, cheap, and doctors know a lot about it. Over the years it has had a very high safety record. More good news is that home INR testing may be an option for you.

If you need anything - let me know!

Best wishes healing!


Rianne 4 years ago

Hi, I just came across this when researching PE's. I have one in my pulmonary artery about the size of a thumb - it's scary stuff. I ended up having this due to my birth control, and I'm only 19. My whole family and doctor and nurses were shocked to find this in me. Thank you for the great information!


Lwelch profile image

Lwelch 4 years ago from USA Author

Hi Rianne! Well you came to the right place. My hub collection has a ton of information as well as great links to other places to get information and support. A PE is scary stuff! Does your family have any history of blood clots? Mine really didn't. I do have a cousin with Factor V Leiden - but I didn't even know about that until after my clot.

Have you spoken to a hematologist to see if you have any other risk factors for future clots? A nurse told me to and I am very glad that I did.

If you have any questions about life after a clot, healing, or preventing future clots let me know and I will try to point you in the right direction.


LadyDeidre 4 years ago

Hi. I'm 3 weeks post diagnosis. I'm a nurse. I had suffered a severe ankle sprain 3 days prior and had actually gone to the ER because I suspected I had developed a blood clot in my leg. The physician there did not think I had one, ordered no test to confirm it or deny it and sent me home. She said it was just pain from the ankle. Well, 13 hours later I returned in respiratory distress. I had a 16 inch long saddle emboli in my pulmonary artery. I had to be placed in ICU. Now, 3 weeks out, I still out of work and really starting to feel the emotional effect of this.


Londontown 3 years ago

Hi,

Thanks for this blog. I find it helpful, especially when I can't sleep!

I had a bilateral PE about 18 months ago, and I still have symptoms that freak me out. More specifically, I have sharp lung pain from time to time (especially when the weather changes) and I still seem to have the coffee grounds coming up from my lungs a few times a month. Is this something others have experienced?

I ended up in the ER twice because of these symptoms, but a d dimmer blood test revealed no clots. I am trying to avoid another CT scan after having 3 last year. I have heard of pulmonary hypertension and I worry that my symptoms might be related to that.


Lwelch profile image

Lwelch 3 years ago from USA Author

The "coffee grounds" thing is what seems most disturbing. I have not heard of coughing up blood that long past the PE. Something seems to be going on, but not sure what. Pursue answers until you find one that makes sense.


terry da 3 years ago

10/25/2012 fell 8' 11/20 surgery roter cuff 11/28 /2012 in er leg sweld trouble breathing found it was mass. saddel pe so mass.my heart was pushing on the clot. dr said i was a lucky man.started me on shots and coumadin.next day found mass.clot in my right leg.3 days later got home scared like every one.now that i found this site i under stand more about life after pe. my bigest thing is the calf and little short of breath and tired other than that no pain just wont to thank you for this site it really helped


Lwelch profile image

Lwelch 3 years ago from USA Author

I am glad that you have found us! Feel free to read my other hubs. There is an active PE survivors group on Facebook https://www.facebook.com/groups/pulmonarysurvivors... as well as at dailystrength.com


AG 3 years ago

I've just been released from the hospital, diagnosed with PE. I'm a 44yo marathon runner in great shape and healthy diet. I believe it's a combo of weekly air travel, a low runners heart rate and possibly a genetic clotting disorder (still waiting on test results). I've got a temp filter and been prescribed a new drug called xarelto. Any other athletes have experience with this drug?


Lwelch profile image

Lwelch 3 years ago from USA Author

There aren't a ton of people that are on Xarelto yet. The good thing about this medication is that it has a lower risk of bleeding and you don't need to worry about diet or frequent blood testing. You will see concerns some places about the fact that there is no FDA approved antidote to treat bleeds for people on Xarelto. So far the research papers have shared that the risk of death is still markedly lower than with warfarin. Of course, we won't know its full impact until 20 years down the road.


Jeff 3 years ago

My wife had a PE 3 weeks ago. @ days on life support and then home. She was seemingly ok the first few days after discharge but now she's so confused. Can't understand how to use a phone, tv remote, washer and dryer, etc. Has lost all understanding of time, too. She doesn't know what year this is or our address. Very frustrated.

We went back to the ER a couple of days ago and had another MRI and an ultrasound. Negative. The doctor says it will just take time. I'm not comfortable with that answer. We don't have health insurance so we cannot just choose another doctor. I guess the reason I'm writing this is to see if other PE sufferers had these kind of symptoms after their PE.

Hope to hear a response via e-mail.

Jeff


Lwelch profile image

Lwelch 3 years ago from USA Author

It sounds like some possible brain damage may be there. It could be minor and return or not. I highly encourage you to ask questions about this in more detail. I would seriously consider a neurology consult as well to assess brain function. If she is having mini strokes on top of clots in the lungs she needs help before it is all lost. I don't know what they have tested as the MRI and ultrasounds are often legs, heart, and arms and those don't help brain issue diagnosis.

Here is what I would do, ask these questions of the doctor:

1. Why is she confused and what is causing her confusion?

2. How do you know it isn't ________ or a __________

3. What tests have you done to confirm or deny your diagnosis

4. If she were your wife/daughter/sister what would you recommend doing next

5. When should I be concerned it is something more

6. What are the side effects of life support and what loss of function would you typically expect at this point

You can ask these of any doctor and multiple doctors (and I would). A family doc, GP, ER doc, your specialists that worked with her. See if the answers match up.

Also, make sure that you have talked to the social worker at the hospital about funding challenges, they can sometimes help out a lot in that area. Medications can often be worked out as well. If you need a source for those try www.goodrx.com it is a very useful site.

I don't know if what she is experiencing is normal after life support. A PE by itself wouldn't cause those problems. From what you noted though, she was in really rough shape and likely has more than just lung damage to overcome.

Another good resource - talk to the nurses. They can't give a diagnosis but they can give opinions on who is a reliable doc, when to get another opinion, and if what you are seeing is "normal" from their daily experiences.

Oh, also talk to a pharmacist. See if any medications may be causing mental confusion and memory loss.

Best wishes!


cityquilter2001 profile image

cityquilter2001 3 years ago from Concrete, Washington

Sept 2011 I had a hysterectomy to remove cancer in my uterus. No radiation or chemo was needed, it was small, slow growing. Dec 2011, nearly three months later I was hospitalized with pulmonary emboli, the ER doctor said "several clots". I was ambulanced to a major hospital 50 miles away and hospitalized there for 3 days. I came home giving myself Lovenox shots and am on Warfarin the rest of my life.

I also had pulmonary emboli in 1999 after a fall on my knee.

I had phlebitis in my leg after my third pregnancy, 36 years ago.

This last time in 2011, it was not confirmed that I have factor v leiden, but it is suspected in my case. My husband and I are coming to terms that I may never fully recover. I am better, but still short on breath at times. I have a walking program and getting healthier.

I thought I was an only case on this until I found your website. I feel better now having seen your posts and all. Thank-you for the information I have been able to read today on PE. And assurance that what I am feeling is normal.

Kristine


Lwelch profile image

Lwelch 3 years ago from USA Author

It is amazing how many months passed between your surgery and diagnosis! I think my clots were a similar deal as far as the timing went. I think I got them between Easter and the 3 weeks after it. I wasn't in the hospital until July 18. Doctors didn't think the travel did it as it was so far away in time from the diagnosis. I have always been suspicious though as it makes sense as a trigger.


cityquilter2001 profile image

cityquilter2001 3 years ago from Concrete, Washington

I do suspect my surgery as well, although the gynecologist surgeon knew my history and took the precaution to do my surgery robotically (laparascopic). Apparently the medical doctors are learning all the time as we are. I am 64.


Lwelch profile image

Lwelch 3 years ago from USA Author

Your body was trying to keep you safe. As clotters, we have a much lower risk of bleeding problems in surgery than the general population. The down side is sometimes our bodies take it too far.


Tiffany 3 years ago

Hi,

Just wanted to say thank you for creating this site on clots and recovery. I was diagnosed 2.5 weeks ago with a moderate sized acute PE and Pulmonary infarction in my right lung and numerous smaller clots in my left lung. The scary thing is that i thought it was muscle pain and endured symptoms including 2 nights of excruciating pain/breathlessness etc for 8 days. I also dosed myself up on muscle relaxants and continued to hike and scramble mountains here in the Canadian Rockies for an entire week before heading into urgent care.......oh my, the benefit of hindsight i guess.

The major thing i have realised going through these pages is how lucky i am compared to others who were in hospital for long periods of time and their life was massively impacted by what happened. So if anything this is teaching me to stop being such a whinny and ungrateful b*!% and think more positively.

THANK YOU! :))

I must admit though the fear/anxiety/lack of sleep from worrying 'when will it happen again' and 'will the next episode kill me' is almost worse than the clots. They haven’t been able to get my INR anywhere near to stable yet (dropped back down to 0.9/1 again after 2 weeks of heparin shots and warafin) .

The lack of exercise is also driving me nuts and totally contributing towards the negative thoughts. I am (pre-clots that is) a recreational triathlete and long distance cyclist, mountain hiker/climber. So it's killing me not to do anything. The fear of moving the clot by over-exerting is another one of the 'what ifs' to stress over though.

I haven’t even started to contemplate the mental stress of life after the 6 months of anticoagulants that some people have been commenting on.

Anyway, i wish the very best to everyone on here that has been impacted by this shitty situation.

I wonder though, are there any other 25 year olds now who have to text their mother (who lives states or provinces away) every morning to say you are ok and still alive??? If you exist, I'm with you on this one!!!! :)


Lwelch profile image

Lwelch 3 years ago from USA Author

I am glad that you are here to read and comment on my Hub! Focusing on the positive will help a lot with the stress. I was living at my parents when it happened but I can tell you when I got out of the hospital she wouldn't let me drive or be unsupervised for the first week or so. If yours is letting your off with a txt you are lucky :). If your doctor will clear you for gentle walking or swimming you may be able to start the baby steps to returning to your former athletic level. Some people are amazing and are out running marathons in a few months. I can't run a marathon without clots, can't picture it with them! Listen to your body. When it is tired, stop. I found a heart rate monitor to really help with knowing when I was overexerting. I was told that my clot was already in the worst spot, my lungs. Ask your doc if s/he thinks yours will move and when it is safe to go back to your routines. You may be happily surprised.

It sounds like you have a great attitude! If you need anything, drop me a line.


Kelly 2 years ago

Hello. I had a PE in August of 2012. I stopped the Warfarin in August 2013. I have been feeling pretty good, but have had recent bouts of shortness of breath. I went to th ER and they gave me oxygen, breathing treatment, and inhaler. The dr says I will have asthma like symptoms when I have drainage or a cold. The inhaler helps. When I laugh I sound like a long term smoker. When I cry, my chest gets weirdly tight and I can't breathe. I got my blood work from the ER and my DDimer is elevated again. The insurance approved an ultra sound of my legs, but not the CT of my lungs. I worry I have another clot. Do you feel like you can't breathe when you cry? I started to "forget" about the past with the clot until this recent shortness of breath.


Lwelch profile image

Lwelch 2 years ago from USA Author

Anytime you can't breathe it is important that the ER or a doctor evaluates you for a new PE. There are other things that can cause that sensation, but for us clotters it may be a sign that we are re-clotting. The elevated DDimer is a concern as well. I see that with the shortness of breath and want to come gather you up, toss you in my car, and have a CT done. The crying comment reminds me of being at work and trying to yawn and not being able to get air to yawn. I suspect that was the first sign of my clotting issues. It was weeks before my final diagnosis.

Do you know why insurance wouldn't approve at CT or what you need to have to get one paid by insurance? If you don't know, you likely have an insurance specialist at your doctor's office who can help you have these questions answered. A well worded statement of your increased risk due to your history, elevated DDimer, and symptoms may get your needed approval. If they won't do a CT they may be able to approve a lung perfusion scan. They have you breathe in a tracer and watch where it goes in your lungs. That was the diagnosis method pre-CT era and is still used in cases where someone can't have the CT dye or be in a CT for other reasons.

If you don't have another clot, fight to find out why you are SOB (short of breath). In the end I was diagnosed with vocal cord dysfunction. When I have a cold, postnasal drip, acid reflux, dry mouth, allergies, stress, smell some things… I can get a tight upper chest, rapid breathing and pulse, hoarse voice, and a cough. This started to kick up more post PE, although I do feel like I had some symptoms of that prior to my PE.

Check out this article on VCD (http://www.dukehealth.org/services/voice_care_cent... and please look into getting more diagnostics done. Let me know what the outcome is. Also, stop by my site, The Clot Spot (I can't give the site address due to restrictions in how HubPages counts website mentions). If you google it or look on Facebook you should find my site. Another good site for answers is Clot Connect.


Kelly 2 years ago

Thank you! I don't know why the insurance is being so ridiculous. It has been at least two weeks without an approval. The CT place said they would get approval by now.

The doctors were never able to find the cause of my PE. That is unsettling in itself. I felt like I had the flu for about a month. My body hurt, my skin hurt. The dr just thought I had a virus. He said my blood was thick, but I should come back in 6 weeks for a check up. I had a cough 4 days before and as long as I didn't breathe deeply it would stop. Going up and down stairs took my breath away, but I thought it was my weight. I woke up one morning with severe pain in my shoulder blade. I thought my arm was out of socket. By that night, a friend made me laugh and I could no longer breathe. Went to the ER expecting them to say it was my shoulder, but was shocked by a diagnosis of PE. It was a crazy roller coaster.

I don't want to go through that again. I would gladly let you take me. I need someone who will press for answers. It is exhausting. I will definitely look for your other page. Thanks for "listening".


Lwelch profile image

Lwelch 2 years ago from USA Author

Work on having your doctor coordinate with the insurance. While that is being done, call insurance and ask to have your case escalated or ask to speak with a supervisor. If you are in a state with an insurance department (Ohio has one), contact them. It is often weeks before they get back to you, but it is good to do it and make someone take notice. Call the insurance people daily. It is irritating, but sometimes can get resolution. Also, some workplaces offer arbitration services or assistance with irritating benefit providers. I know my former employer has ADP provide that as part of our package. I would ask your insurance for a copy in writing of their CT policy. Get a fax or email copy. You can then draft a letter that includes everything that I mentioned above.

Many people never find out what provoked the clot. Even if you do, you often never REALLY know. I have Factor V Leiden. Only 1/10 people with FVL clot. I was on birth control, but I had been on that same brand for YEARS. I am guessing a lot of factors just piled up and then caused the clotting cascade to get enough out of whack to make the perfect storm.


Erica 2 years ago

Thank you so much for posting this. I actually have Heterozygous Factor V Leiden. My first clotting episode was in Dec. 2009. I had a rather large DVT in my left leg and bilateral PEs after having surgery to have my gallbladder removed. I then had another clotting episode just 2 months later where I had clotting almost the full length of my leg. The doctor's didn't seem to know why this was happening until I received my diagnosis in November of 2010 aftet they weren't sure if I had a new clot in Oct. of 2010. I have struggled a lot physically from my condition, but the Lord has protected me SO much :) I actually just recently had a new clot in Feb. of 2013 while being therautic on Coumadin :/ My new Hematologist has told me that he believes I have an underlying condition because of how aggressive my condition is for just being heterozygous. I am on lifelong anticoagulation therapy, but I would love to go off of it and try something more natural. Do you have any suggestions? I have since applied for Disability again and got rejected, but now I have a lawyer and am just waiting on my hearing date. It has been difficult because it is such a different kind of disability, like you were saying. I will be praying for your continued recovery and prevention of any more clots.


Lwelch profile image

Lwelch 2 years ago from USA Author

The best treatment that you can have is prescription anticoagulation. No natural solutions will place your risk lower than prescription choices. The reason is that the prescriptions have been tested and you know how much is getting into your body when you take a dose. Also, no natural sources have been significantly tested. If you go that route, you are the test. I don't want to be a test market for something as serious as the clotting system in my body. I don't feel safe being a test case. I want to know what I am getting myself into. It does sound like you may benefit from one of the newer anticoagulants. If warfarin isn't doing it, you may clot less on Xarelto. It doesn't have the dietary and testing requirements that warfarin has. Also, if you are clotting on warfarin maybe you wouldn't clot on Xarelto. It would be worth a shot.

The best things that are natural are things that you can add to you anticoagulation. Weight loss and daily activity are the best things that are available to prevent clots.

Has your doctor ruled out cancer and other clotting conditions? If not, it is worth asking for testing to look at those possibilities. If they are ruled out, then you likely have an undiscovered clotting condition. FVL was only found in 1994. I am sure we will be finding more conditions as time passes.

Now I know that I am against supplements, but you did ask. For this reason I am going to give you a link to a detailed article about the natural alternatives. http://patientblog.clotconnect.org/2013/05/01/natu... After reading it, I would love to know what you choose to do!

Best wishes with whatever treatment you choose!


RJ Willing 2 years ago

Great resource. I am currently in the Army and potentially separating from service soon. Last year I fractured my leg during a jump. I was placed in a compression cast and sent home for bed rest and orders to keep my leg elevated. Within 24 hours I developed severe pain in my back. Turns out it was a PE. While hospitalized I found out I was Heterozygous Factor V. I was placed on Coumadin for 6 months then cleared. My concern is the long term effects the PE had on my body/lungs and the potential for recurring clots. I have only had one incident but as most of you are aware, the fear of another PE is troubling. Has anyone had any experience with the VA and how Factor V can limit activity?


JDH 2 years ago

I am 48 and was running 14 km every day. My PE started by falling and hitting my knee, back in September 2013, I was on crutches for 3 weeks and one day my ankle and foot were the same size as my calf. I immediately went to the doctor and they sent me for a d-dimer test which turned out positive (at that appointment I was put on Xarelto) I then went for an ultrasound on my leg on the Monday and was confirmed that I had a PE at my ankle and 1 large one behind my knee, was then off work for a week. Three days later my husband drove me to emergency and I was admitted, Xrayed, CT Scanned and hooked up to heart, oxygen and switched to warafin etc within 10 minutes. The PE that was behind my knee split and went to both lungs and my rt lung is infarcured. I'm on 8 mg of Warafin and go and have my INR done twice a week, I can go on a Tuesday and it will be 2.4 and then the Thursday will be 3.0, or 1.8 to 2.4, it is constantly fluctuating. I am constant pain in my upper back, when inhaling and exhaling, I took Tramadol for 4 days and switched over to Tylenol 3 with Codeine to get me through the night. At the end of this month I am going to an internal specialist and am waiting for another CT Scan. I still get the burning sensation and slight swelling in my ankle. I get fatigued very quickly walking up and down stairs then need to sit. Vacuuming the house takes me 3 days. My knee which started all of this I cannot bend past 90 degrees and I go for an MRI in June. Does anyone else have pain in their back ?


Lwelch profile image

Lwelch 2 years ago from USA Author

All meds can influence INR - or at least almost all of them. So anything you take messes with it. Big fun. If you keep having fluctuations you may wish to explore going back on the Xarelto. You need to know if you clotted more on the Xarelto or was it just that your DVT in your ankle moved into your lungs. If it is the second, you may do well with Xarelto as it really has been shone to be safer than warfarin when used in patients with unstable INR measures.


JDH 2 years ago

Update.....I previously posted and today I went to an internal specialist, he reviewed my past health and found I was quite fit until this incident. I told him have constant pain 24/7 in my back and I take up to 10 / 500 mg of extra strength Tylenol a day or if I take my t3 at night then it's usually 4 / 500 mg a day just to ease my pain. The pain doesn't increase or decrease no matter what I do. He listened to my lungs and came to the conclusion I have pleurisy, he doesn't want to do a ct scan as the high radiation as I maybe having one in 3 months as it will be 6 months on the warafin. We discussed the pain etc and he has now stopped the Tylenol and Tylenol 3, and put me on Celebrex . I am to try this for a week and call him to let him no what's happening, if no improvement ct scan. Still have to go tech a week for inr test and still on 8 mg of warafin. Told me no alcohol!


Lwelch profile image

Lwelch 2 years ago from USA Author

Best wishes for finding some adequate pain management. It can be a struggle while on anticoagulation! i can see why he wants to wait on the CT. If you keep having problems you can ask for a referral to a specialist to see if a hematologist or pulmonologist has any ideas that your GP hasn't come up with. I did that and was diagnosed with vocal cord dysfunction. treating that made my breathing so much better! Keep advocating for yourself. You are doing a great job asking questions and I can tell you are getting your doctor's clinical reasoning as answers. That is an excellent skill for both you and your doctor to have and use! If I could have you teach others how to get those answers you would be such a gift to other patients.


JDH 2 years ago

See previous post, update is, been on the Celebrex for 1 week with no help/relief. I called specialist after 1 week of being on Celebrex and the specialist is now ordering a CT Scan. My leg and ankle still burn and slight swelling, so I still elevate.


Lwelch profile image

Lwelch 2 years ago from USA Author

I am sorry that you are struggling with the pain. Pain management on anticoagulation is a problem. The swelling is often best controlled with compression stockings and elevation. That may help the pain as well.


Yuka 2 years ago

Thank you for sharing. I find the blog and everyones post very helpful. I sit here writing in front of my laptop so scared. Every little pain or tickle near my chest sends me to a complete panic. Panicky to the point I feel I might pass out. I am trying to stay calm and not read too much information on Google as it only sends me into a panic.

I am 34 years old and the day after my arthroscopic knee surgery I felt cramping. After 2nd ultrasound I found a blood clot. Started on Lovenox injections and coumadin. Days later I began to feel winded easily and CAT scan showed PE in my left lung. I was hospitalized for one day. It has only been 3 1/2 weeks since my surgery. Everyday I worry that I won't wake up in the morning. I wonder if I should go to the ER. I am living in fear and it terrifies me. I don't know anyone who has PE so I am struggling alone. I don't know much about PE other than what I have researched. What are types of questions I should be asking my Dr? Thank you for listing.


Lwelch profile image

Lwelch 2 years ago from USA Author

Jump to one of my other hubs: http://hubpages.com/health/Questions-To-Ask-A-Doct... I have an entire list there for you.


KatB 2 years ago

I'm so glad i came across this page although its confrontational for me.

I was diagnosed in 2009 at 19 with factor 5 due to an unplanned pregnancy whilst on the pill, I had an extensive DVT that reached in to abdomen and also a PE before being sent to the emergency. I am the only one in my immediate family that has this and it was so out of the blue i was sitting around for weeks before ever being taken seriously or thinking 'clot'. I have struggled ever since, i have struggled with taking my Warfarin and for months at a time i can't bring myself to accept this disorder and neglect to treat it. I think its more then anything the initial diagnosis and the shock that brought to my life or the prospect of future battles ie pregnancy. I have never met anyone with Factor 5, let alone anyone my age with a disorder like this and as much as i wish it upon no one its reassuring to find information like this site. It's been years and I am still unsure as to how to cope with this day to day. Hopefully i will get there :)


Lwelch profile image

Lwelch 2 years ago from USA Author

Hi Kat! If you have FVL then either your mother or father also had FVL. In my case my mother is likely the carrier. She never clotted. I did and it wasn't pretty. It also took weeks for my diagnosis due to my age and short list of risk factors. In my case my hematologist thought that being off of anticoagulation was an acceptable risk if I avoided the pill and used anticoagulation for surgery or pregnancy. So far I am fine. I recommend going to Clot Connect and reading their piece on who should be on anticoagulation and see where you feel that you fit into their criteria. You can show this to your doctor and have a discussion about your risk. Here is the article: http://patientblog.clotconnect.org/2011/03/30/dvt-...


Viola 2 years ago

Thank you so much for sharing all of this! I have been a nervous, depressed, stressed, and panicky person since my PE. Mine started with a broken foot, doctors just said keep your leg elevated and no weight bearing, which I did and when my family came to visit and I started moving around more it hit me on 7/4/14. I was in the hospital 5 days and on the 4th day had my first panic attack. Since being home my life has litterally been hell! When I went to see my doctor he was more concerned about getting me out of the office than listening to me. I'm trying to change doctors! He immediately put me on lexapro and xanax and was confused about how I should take the warfarin. I've had severe depression and anxiety. I've cut my pills down because I don't like taking medicine. Now I'm dealing with my blood pressure being really high and with nightly palpitations which keep me from sleeping. I know its only been 3 weeks, but this not being productive and energetic is killing me. I constantly think I'm a failure to my family. And I still have another 4 weeks in my walking boot. I just want my life back!!!!! What are you eating these days? After this is all over can I start eating differently? I mean this warfarin diet is much healthier from what I was eating but I'm missing so much!! Reading about your experience has really energized me this morning!! Thank you so much!!


DD 2 years ago

Thank you so much for you post. I had a massive straddle pulmonary embolism in Oct 2010. I was fortunate to collapse in the presence of medical professionals and received CPR immediately. It took over 18hrs, 10+ separate ocassions of CPR, tPa, heparin, the first of two thrombectomy surgeries, and my first blood transfusion before I was stable enough to exist on relatively stable on life support. A second thrombectomy surgery occurred 24 hrs later with a second blood transfusion and a temporary IVC filter placed the following day. I stayed on life support for 3 1/2 days. I spent a total of 9 days in the hospital. It was discovered I have Factor V Leiden Deficiency and probable Protein C deficiency. No other contributing factors could be determined as to why the massive PE developed or why I didn't have any classic signs before complete cardiac and pulmonary collapse.

Life following the PE diagnosis was an emotional rollercoaster for many months. Pain meds for several weeks after discharge played havoic on my mental well-being as I desperately tried to determine what physical and mental deficits may remain from the experience. Healing was slow and improved in spurts along with some regressions. I can also attest that the pain, fear, panic & anxiety gets better with time. However, I will also attest that if you go thru anything that serious , there will always be something that stays with you. Closing in on 4 yrs and I still take all precautions possible to prevent a reoccurrence while fully knowing a reoccurrence is always still possible. I try to remember each day is a blessing for which there are no guarantees. This hub in itself was a blessing. Some think my PE is something buried in my past. Only those closest to me know I will live with the precautions and just a small bit of fear everyday for the rest of my life. This post helps that feel a bit more normal. Thank you!!!


jessica 2 years ago

i just had my PE august 18th 2014, im only 25 i have 2 children, and just got married june 7th, i felt lilke i was being stabbed in my chest, come to find out i had a blood clot in my lung, doppler test revleaed no DVT or clots in my legs, says sit was caused by my birth control, i want to have another baby, and i keep reading that most people die within a year of diagnosis, im very lost, and because im back at work and moving around my husband everybody just assumes im fine, i can't sleep at night because im terrfied im going to die, i have chest pains constantly, not to mention at my first check pi found out i have a piece of my lung that died because of the lack of oxygen i need to talk with some people who understand what im going through..


norman 22 months ago

I first began to suffer with shortness of breath when ever I tried to do anything physical. As most people I ignored it yet always was in very good physical condition. I eventually took a flight for business and during the flight I remember feeling very uncomfortable. Upon arriving at my destination the next day my calf was swollen and very painful. I knew immediately I had Deep bone thrombosis. I had it before after surgery in my past so I remembered the pain. Once I returned back to home I immediately went to the hospital and finnaly after a cat scan they determined I also had a Pulmonary Embolism And Factor V Leiden Diagnosis. Since then I also have had numerous false embarrassing trips to the hospital with shortness of breath only to find out all was fine. The main reason I now am even reading and writing my case is because today since 2008 I still suffer with depression but most importantly I am constantly out of breath. I have not recovered even close to where I was before my diagnoses and am now fearing my shortness of breath is now going to be a part of my life going forward. I've even gone back to my specialist thinking I am getting more clotting due to my shortness of breath only to find out that i have no clotting. In fact that was the first time I saw and found out that my lungs had a lot of scar tissue and that was the reason that I will have shortness of breath. I'm now 53 years old and feel like I'm 70 and not getting any younger. When the hot humid weather comes I can barely breath and am afraid to do anything. Am I the only one that feels this way after this illness? Is there anything I can do to improve my current state?


sandy 20 months ago

Add Your Comment..my daughter has Paget Schroetter Syndrome, upper extremity blood clot, with multiple pulmonary embolisms....they said too may to count....this happened in 2011, she went to a hospital with a swollen arm, they did a blood test and ultrasound and determine something was wrong, but not a blood clot, so they sent her back to grandmas....momma bear didn't feel right, and we were so glad our insurance wouldn't let us see someone out of town (she was in college), so she had to come home and her pediatrician requested a CT scan with some liquid stuff....where they diagnosed the arm clot and PEs....she was admitted for 10 days...she had every test and they couldn't determine why this happened....2 months later after shoveling her arm swelled again, they figured something was seriously wrong....diagnosed finally, surgery for first rib removal......they never left us with much information after that....needless to say this past week my daughter had swollen legs, going numb, and pain....shortness of breath, a cough...so they took the blood test--negative, sent for the ultraound--negative, so my daughter was sent home and has to see her doctor today....she said walking up and down the stairs she is out of breath (21, a wee bit overweight...certainly not enough to cause SOB).....we don't know what to do, we know there is anxiety, should we ask for certain tests? is she healed after a cause has been found for the clot? because there were PEs is she at risk no matter what? Any help would be helpful!


Lwelch profile image

Lwelch 20 months ago from USA Author

I don't know much about Paget Schroetter Syndrome. I guess you need to ask for a hematology consult and ask that very question. What is the risk from the syndrome and how often do PEs form from that or are there other clotting conditions that played in. having a PE does always increase the risk of future clots. I would wonder though with the cause being worked on with the surgery maybe her risk goes down. That is a great question to ask! The PE and what sounds like a major surgery will take time to heal. I was short of breath for a very long time after mine. Ask a doctor what to expect when the surgery is included. A hematologist can answer the questions about if she has other clotting risks. Genetic tests can be done now and then the hematologist will be able to tell you how long she will be on anticoagulation therapy and which tests should be done when her therapy is completed. Make a huge list of questions and start asking them of every doctor that you see. This will get you the answers and control that you both need.


rita 14 months ago

I been diagnosed with a pe almost a year ago and I still have symptoms . I'm soo scared because a friend of mine just passed from a heart attack (he was older) and my doctors don't know where they came from


Lwelch profile image

Lwelch 13 months ago from USA Author

Rita, I have good news. You survived. You are strong. Your body can fight this. If you can't find the cause of the clot there are a number of anticoagulants than can help to keep you safe. Hang in there! I am so sorry for your loss and I am cheering you on from the sidelines.


Alaskastarr 12 months ago

I'm in kind of a gray area compared to all I've read here. I passed out on a dance floor on September 13, 2014. Luckily I didn't hit my head, a friend caught me. Our friends advised my husband to take me to the Emergency Room because I could barely take a step without gasping for air. The first ER visit they did an MRI of my head even though we told them I didn't hit my head...they said no brain trauma and sent me home. Sunday I went back because I was having more difficulty breathing. This time they did an x-ray and said I was constipated...even showed me a spot that they thought was the cause...put me in a room and gave me an enema and laxatives and they forgot about me. They sent me home again and still I was gasping for air. Monday I went to my primary doctor and I couldn't walk anymore. I had to be wheeled in by wheelchair. I was that bad. She ordered more tests and then I was sent home AGAIN. The next day, Tuesday, I was called and advised to get back to the hospital as soon as possible. She ran a D-Dimer and that was high. She called ER and told them I was headed their way and had them set me up for a CT scan....while on the table after the scan was done one of the techs was actually sent out to make sure I was still alive. They found a massive saddle pe. I was immediately put on oxygen...stabilized and sent to ICU. I was in the hospital for a week, They sent me home with warfarin and oxygen. I had to drag around a tank for a month. A week after being discharged I was back at the ER and this time was diagnosed with a pleural effusion. That thing hurt more than all three of my childbirths. I was admitted again and they worked to control the pain. I was sent home two days later with pain meds.

For the past year or so I had been complaining about a pain in my right side....somewhere around where my appendix would be. No one believed me. I was tested etc and eventually told it was psycho-somatic. I was on warfarin for six months and was scheduled for a colonoscopy (to rule out any issues there finally) a week after completing the warfarin regimine. I was scoped on Monday, advised I had stage 3 colon cancer with 1 lyphm node involved on Tuesday, Taken into surgery on Thursday and this is when they found a baseball size tumor in my cecum.

The reason I'm telling this part of the story is that I was advised after the surgery that cancer makes a persons blood more prone to coagulation. In other words they figure my massive saddle PE was due to my cancer.

I was put on 6 months of chemotherapy and thankfully I'm almost done with that now The problem I'm having is that I can't figure out whether my fatigue is from recovery of the saddle PE or the chemotherapy. I sleep ALL the time or am in bed or laying on the couch. I don't have lots of energy for most of my days. I was advised by my oncologist that my PE is in my past, but I was told that the emboli that was in the bifurcation of the lungs had not gone away, but just scarred over and gotten a bit smaller. The same thing was said about a long blood clot that went from just above my right knee to the middle of my abdomen. I also had a clot in my eye and they think maybe a small one in my brain as I seemed to have lost a bit of my ability to remember words etc.

I just want to feel better. I can't find any information on whether I will ever be even 90% back to where I was.

I will say I'm thankful to be alive every day I wake up is a good day. I'm only 46. I have survived to very life threatening events in the past year. I still fear having blood clots. I fear the return of cancer (I'm hopeful that next month when ehemo is over the scans come back negative) Because of all this am I considered disabled? I have a temporary disability tag for my car because I can't really walk far because I'm so fatigued. I'm sorry if this story was too long....perhaps I'll head over to the facebook page you suggested...thanks for any info you may have.

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