@Lauren2 - first off, i'm sorry about the PE you experienced. i think most of us have felt anxious about the future and whether we'll have a recurrence of DVT and/PE whether we believe we know the cause or not.

i would recommend having another discussion w your dr about your concerns for the future, assuming you trust your dr's expertise in this area. is this your GP or a specialist? i find varying levels of PE management awareness among my drs. i've received excellent advice from my pulmonologist and very misguided advice from my ortho surgeon. you may want to consider a second opinion if you don't think your concerns are adequately addressed.

i also had a DVT/PE that was blamed on an orthopedic injury and surgery after. unless a dr i trusted w expertise on PE issues specifically forbade it, i plan to use lovenox when taking long trips if i'm not on warfarin. it's my body, and that's my choice...i'd rather err on the conservative side (i'm also relatively young - 45 - and plan to have lots of adventures involving planes and cars in the future, as do you!)

good luck

Hi Lauren2,
I would get a second opinion if you are not comfortable with the advice that you are getting from your dr. I am a lifer on coumadin and I still make sure that I get up and move around when I take long rides be it planes or cars. If you do nothing else, make sure that you drink plenty of water during your travel time and get up and move once an hour or so. If you are flying, get up and go to the bathroom. The idea is just not to be sedentary for long periods of time.
Like Trin, I am relatively young, 40, and there are many more adventures in my future. Italy this past summer and who knows where this summer...safe and happy travels.

If you're not on warfarin, I don't know that you MUST inject heparin before travelling. Seems a little extreme to me, really ... but, if you have to do it to feel comfortable travelling, then I would.

I had my first DVT in 2005 at age 30 and once I came off warfarin I was clot-free until 2009. During that time, I travelled both by plane and by car and didn't get another clot. I've also never had a trip of any sort connected with the clots I *have* gotten.

Since you have a clear cause for the clot you had, I would think you could take the measures they recommend for all travelers ... both with and without clotting history. Flex your feet and legs. Get up (or get out of the car) and walk frequently. Stay hydrated. You could also add compression stockings if you wanted.

Me personally, I'm a lifer at this point since I've had three clotting incidents. I'm on warfarin but I still do all these things, just to be safe.

Although, I wouldn't personally persue the lovenox, ya gotta do what you feel is right (and safe!) for you. Best wishes...

I came off warfarin in November (no clotting disorders found so the reason for clotting was chalked up to being on BC pills for 5 weeks ). I made my first post PE flight last month..... so far, so good... no clots. Prior to my trip I started freaking out about the whole thing so I called my pulmonologist and asked if I needed lovonex shots or compression stockings. I was told no... basically live life like I did pre-PE.

Well, for my own peace of mind, I went to the medical supply store and bought compression stockings for the flight. (actually I wore them during our 3 hour car rides also) I stayed really hydrated... not just on my flight but also during the many long car rides we took while visiting, and I made sure that as soon as the pilot turned the seat belt light off I was up and walking around the plane. I also rotated my ankles and stretched out my legs throughout the entire flight (only a 2 1/2 hour flight).

So when you ask if you should take preventative measures for the rest of your life.... I would say yes.... just by being aware of these simple things that we can do to prevent clotting is taking a preventative measure. These are just healthy things that really everyone should be doing while traveling whether or not you've had clots. (Anytime someone tells me their traveling I go through this checklist with them!)

Talk to your doc of course and get his/her advice, and if your gut tells you that you're not satisfied with the answer than check with a different doc until you have peace about what is right for you.

Taking that trip was a huge step in my healing process. It gave me confidence and made me feel like I am getting my life back to normal. The same will happen for you.

I wish you all the best!

Lisa

Hi Lisa: I was just "researching" the use of heparin as a preventive DVT/PE measure before long flights when I came across your post. My history is that I was diagnosed with a PE in August 2010, most likely caused by long flight to/from Europe in late May/early June 2010 (yes, it took some months to be diagnosed). I came off my 6 months of warfarin about 3 weeks ago, and will undergo some additional lung and blood tests in late April. So hopefully I can stay off the warfarin, but that's brings up a certain low level anxiety about future long air travel (we love Europe!).

My pulomonary doctor was a litle skeptical of using heparin as a profylactic before air travel. Today I found a 2007 medical journal article by team of Univ. of Virgina doctors, who have looked a large number of other articles on DVT prevention. They did find one article (I believe by an Italian doctor) which showed benefits of heparin to prevent DVT on long flights---but thats about it. See if you follow this link to the U. of Virginia article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1824715/?tool=pubmed.

Or do a search on "Air Travel and Venous Thromboembolism: A Systematic Review" by John Philbrick and others.

Anyway, I need to keep searching for any articles after 2007. Also, informtion on what the dosing of preventive heparin might be (amount and number of days before/after flight). I then will talk to my doctor about it. I'm kind of in the "can't hurt to try it" mindset right now.

Let me know if find any other info.!

Does anyone still have clots in their lungs and yet advised they can travel? I have the clots still after 14 months and am told I can't even think about it? I have heard of others who did so any way and survived. Confused since I used to fly once every month but now the Drs say they don't think that was the cause. I miss flying north to see my grandson but don't want to take a chance that leads to death either.