Hey Kelsey,

Yes, many of us STILL have those moments, I had one last year on XMAS eve(10PM) and to the ER I went, all the symptoms pointed at a PE,chest pains, shortness of breath, BUT the following day at around 5PM it came out that I had a gall bladder attack.(worst time to go to the ER, they are shortstaffed)

Knowing that you know the proper procedures (hydration, exercises and FUGLY while on a flight) and I'm sure you go through it all, I would say, it's a matter of doing what you normally do when this happens when you are at 100% . Not tired from a hard week at work....

We are human...

How are you doing NOW?

Wish I had some good advice on this, but I'm in the same boat. Even though I'm a lifer on thinners now, I still worry about this stuff. (My clot leg ached all day today; I've been trying valiently to blow it off.)

Dero is right in that these are usually "moments." I definitely have times/places where I feel much more paranoid. If I can make it through those, the rest of the time is smooth sailing.

But, yeah, after life-threatening things like clots, it is hard to let go of the vigilence and relax. We feel a little safer when we're paranoid and paying attention to our bodies ... but we also feel stressed.

You might consider practicing some relaxation techniques, especially if stress and exhaustion trigger "moments" like these (I know they do for me!). I've been working hard on this and sometimes it works, sometimes it doesn't.

Best wishes. If you learn the secret, clue me in!

I have had so many clots(8 and 1 PE) that I can relate. My leg pain is hard to keep in check and I frequently have pain that feels like another clot. I usually call my doctors office and schedule a PT/INR check to see if I am ok. I usually am in range and just go home and take my pain med and try to relax about it. Its not easy to do and the pain is just as bad as having one. I usually apologize to my nurse and she tells me not to worry about it she understands and cant imagine going through what I go through and have been going throuogh for over 13 years.

I think we all all all suffer from this from time to time, and I think it's just a matter of learning to deal with it vs actually preventing it. I think the doctor in the ER said it the best "Nobody likes to be reminded of their vulnerability".

Last week, I was sitting at the computer, and noticed that my foot was throbbing (and it was not my DVT leg!) I looked down & saw a knot, and discoloration, and flipped out! Until I remembered that a while earlier, I'd whacked my foot on a medicine cabinet that was sitting in the hallway, waiting for a friend to come over & help me install. The first thing I jumped to was blood clot, whereas before, I'd just have assumed I'd whacked myself, since I'm clumsy that way. Even though I know what caused it, I still examine it carefully a few time a day, and make sure that it's still just bruising, etc. And I keep fighting with myself whether I should go to the doctor or the ER or not, just in case it maybe turns into a bloodclot...

Just try to be kind to yourself. And realize it's better to be paranoid than the alternative.

Sayhello

My apologies for my delinquency in replying to these responses. Thank you so much for your insights & replies. It helps even just knowing that you all also have the same worries at times.

Funny how, even having incredibly supportive family and friends, it's SO different hearing from & talking to people who TRULY know and have experienced what it's like having a DVT and what it's like to deal with it after. Whew! Again, my thanks for the support.

Hi Kelsey,

I understand completely what you are going through! I have recently been diagnosed with a DVT and have found myself waking up in the middle of the night freeking out that I have symptoms of a DVT. What is causing me the most stress lately is that I am supposed to be flying saturday. I was wondering how soon you traveled by air after you were considered therapeutic? And if you have any pointers on the matter? My primary is advising me not to fly but is not answering any of my questions.....

Thanks!
Ashley

Hey, Ashley, thought I'd answer, even though I'm not Kelsey! :-)

I had a DVT mid-January 2009. I had a 5-day Caribbean cruise all planned & paid for in mid-February. EVERYONE I talked to (doctors in the hospital, primary, Coumadin clinic folks) said it was perfectly fine for me to plan on flying to Florida (where the cruise left from). They all recommended that I get up every hour or so & walk around; that I make sure I drink tons of water & stay well-hydrated, and do some exercises & stretches for my feet & legs while sitting. And be SURE and wear my compression hose (at the time I was in thigh-highs) I went, I had a great time even though my white thigh-highs made me look like a beached whale! I was alive, and had this great trip, and it was a really good thing for me.

Maybe your primary has a good reason to say you shouldn't fly, but I'd sure want to know what it is before I canceled any plans!

(In the year & a half since my DVT, I've flown from Ohio to Florida, to California, to Alaska and to the Mediterranean. Flying can be done as long as you're careful do what you're supposed to...

Sayhello

Hey Ashley!

My answer is actually pretty similar to sayhello, believe it or not. I was diagnosed with my DVT in late April 2008 and the DAY I was diagnosed while still sitting in the hospital I was already asking my doctor this same question about travel!

I had already pre-paid and made all the arrangements to depart in June for a several month long course of studies in Switzerland. So of course, I immediately was concerned my diagnosis would de-rail all of those plans. After 14 days of Lovenox injections to get my INR to suitable levels (and once therapeutic on Coumadin), my hematologist felt very comfortable advising me to go forward with my trip about a month later. Of course though, that recommendation was made with many of the same conditions which were recommended to sayhello - namely, drinks TONS of water, get up, move around frequently, and wear 20-30 mmHg compression stockings.

I made the long trek from LA to Geneva (and ongoing travels over the next two months), and lived to tell the tale! Admittedly, I did encounter some discomfort (esp. while in very high elevations in the Alps and after sitting for long periods of time), but overall was absolutely fine.

I also now continue to travel internationally on a frequent basis for work and still religiously follow the same drill. TONS of water, get up every hour, & rock the compression stockings =) Also, I'm a big coffee drinker regularly, but try to avoid it on days I fly as it is dehydrating (swap for hydrating teas instead & also avoid any alcohol the night before). The last few tricks I swear by is to flex your calves & point your toes while sitting to keep your legs moving & try to prop your feet up on a bag or purse so they are a bit elevated.

Not quite sure how long ago you were diagnosed with your DVT? May have something to do with why your doctor isn't recommending?

Best of luck!! And let me know if you have any further questions as I know travel was (and sometimes still is) a HUGE fear for me after getting my DVT. I commiserate with you on that one!!

Kelsey

Thanks so much! you have made me feel a lot better. I was only diagnosed 11 days ago with my DVT but have been therapeutic for the last 7. My fears of travel are purely ignorance. My doctor is not stating why I shouldn't travel, simply that its not recommended. Since my knee surgery on July 20th, I have had to cancel 2 trips and possibly a 3rd because of this. Right now my primary care physician is handling my clot and I will not see a hematologist until after I am off coumadin, to see if this is a life problem or just a result of a surgery. I have spoken to several friends and family members who are in the medical field and all but one and my doctor are saying I should be fine as long as I follow the necessary precautions. So to me it seems like a game of chance, and because I am new to having a DVT, my knowledge of the condition is weak.....although it has grown tremendously in the last 2 weeks!

I have canceled my flight for Sat, simply as an ease of mind for my own sake. I am driving down with my family to FLorida. Some say driving is worse but at least I know that: I can elevate my leg, stop every so often to stretch and walk around, and if anything were to happen....I would be on the ground to seek treatment as soon as possible.


I have another trip to Atlanta on the 20th which is less than a 2 hour flight for me. I am still debating on whether or not to go. (My bf is conveniently an officer in the Navy and is stationed in ATL which is why I have so many trips planned to see him ). My surgeon painted this picture in my head that I am going to be in the plane and have a PE and die, by telling me stories of such cases. However these cases were individuals who were not mediated and on long flights. But I can't help but associate that with my own case. I am seriously debating on changing my PCP because I feel that I am not being heard and that they are just worried about their own liability issues.

From this site I have seen that people with DVT's can live a normal life as long as they take precautions and am very thankful that I found this because it has honestly given me "Daily Strength" haha as corny as that sounds.

But again, thanks so much! It's a bit of a relief to see that I am not alone with this!!

Take Care,
Ashley

little typo...The fatal stories I heard about having a PE from a flying was supposed to say 'not medicated' not 'mediated' haha whoops.

oh and one question....is the concern of flying with a DVT simply because of the immobility? or because of the oxygen levels in the cabin and the air pressure change from the altitude? Just wondering if you knew anything about that! Thanks!

Hi Ashley,
The age old question that so far, has not been answered YET.
Is it the high altitude, the lack of oxygen, the lack of room in the seats or the fact that people simply fall asleep after having a few drinks and coffees? Even after so many years that people were blaming flying as being one of THE major causes for DVT, they still don't know... Like MANY other things about this disease, as you will find out. It's not the sleeping, it's more the lack of movement and having your legs in a 45 degree fold that does not help, limits the blood flow.

You seem to have all the advices you need, plus you really have to get serious about a 4 hrs and more, you should be fine with a 2hrs flight (as long as you take the precautionary measures.
The same applies for ground traveling.

BTW, welcome to DS!!

Denis

I was told by the vascular specialist and my primary and the pulmonary specialist in the ER that the problem is *not* the act of flying itself (not the altitude or the air pressure). The problem is that most people get in their seats (their tiny, cramped, narrow, leg-room-less seats) and then do not move again until they leave their seats at their destination hours (and hours) later. Those seats are HORRIBLE for your circulation. As long as you do all the things you're supposed to, you should not have a problem.

Sayhello

Thanks Dennis and Sayhello! My fear of flying isn't with being seated because I know that I could get up and walk around but with the other conditions (altitude, oxygen, etc). But I feel a lot better about it now and will be flying in 3 weeks! I find it a bit crazy how this question does not have a definite answer and that their is not an easier cure for a DVT. BUT...I am not a doctor nor a scientist so I'll leave the medical research up to them! :) Thanks again!

God Bless,
Ashley

Ashley, enjoy your trip! Try not to worry too much!

Sayhello

My son did the traditional interrrail trip with friends after the end of the high school, just 4,30 months after his dvp. He took two planes, one Madrid-Paris and anoter Milan-Madrid to come back. He also took many trains and even slept in two or three of them. When the trip was long (more than 3-4 hours) he gave himslef a dose of heparin (3.500). Since then there have been two long bus rides, car trips, etc. He just wears his stocking, drinks water and tries to move often, like 5 minutes every hour and also moving his leg a bit while sitting in his seat. He is trying to do all the things he had planned for this special summer, with quite good rsults so far.