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  • Advice Needed: DVT, Warfarin, Lovenox and Travel

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    Old 08-31-2019, 02:42 AM   #1
    Join Date: Jun 2006
    Posts: 370
    gav_73 HB User
    Advice Needed: DVT, Warfarin, Lovenox and Travel

    Hello. I wasn’t sure whether I should post here or on the autoimmune board. But I decided this was the best place because my questions are related to the blood clots that developed after a fast and furious flare up of some autoimmune disease they believe is APS (still pending labs).

    The ache started in my right knee, swelled from inflammation. It progressively worsened and then spread like fire to the back of my calf. My lower leg swelled, then my ankle, then it began to ache further up into my thigh. It became unbearable to walk and I went to the ER. After a D Dimer result of nearly 1400, it was clear this was no minor ache or pain, and confirmed two clots on ultrasound. They confirmed no PE, agree which I was released on Warfarin and Lovenox injections. I had no instructions or precautions or anything else. Thankfully I had just seen a new internist the week before because I was so sick with inflammation and needed a referral to a rheumatologist before I could get in to see one. She ran lots of labs and my WBCs, platelets, CRP and ESR results were extremely elevated and on paper, looked like I had an infection. The thing was, however, I had been on strong antibiotics for 9 days prior to drawing the labs. She was genuinely concerned and made an appointment to follow up with her the next week. In the meantime, she told me should I feel worse to go directly to the ER.

    I did when my leg continued to swell and become increasingly more difficult to walk, very painful. I am still in the dark about what precautions I should take other than try to get up every couple of hours and move around, that I need to be careful not to cut myself; that I will bruise easily, which is normal for me anyway; to wear compression socks and that I need to be monitored while on the warfarin often until i reach a 2-3 on my INR and can move to Xarelto. But I have been on the medications diligently for 6 days and not a single thing has changed. My INR is exactly the same as it was before the clot and before the meds...a 1. My WBCs are still high and so are my platelets.

    This is my dilemma: I am scheduled to go on the biggest most exciting trip of my life in 21 days. We are flying to Prague and traveling to Vienna and Budapest by rail for 10 days. I was sick with lung and inflammation issues for a couple of years and suddenly went into remission. I have been well for over a year. No issues at all. This trip is my “honeymoon,” which has been postponed for 2.5 years. Needless to say, this trip is truly the most exciting thing I’ve ever had the opportunity to do in my entire life. It is very important to me that I not have to cancel.

    But I have literally no clue how to take care of myself, what I need to be careful of besides the obvious, how “mobile” does “mobile” be? Since my leg is still very painful, I have to limp or walk on my tiptoes to compensate for the pain and keep my balance. So naturally I am not active at all. I am spending as much time in bed or on the couch as I was when I got the clot simply because it’s painful not to. I have been told the clot can dislodge and to be aware or any chest pains, etc. But aside from being told to be more active - which is clearly difficult - I have no idea how to prevent it from breaking apart. Or worse, what I might do accidentally cause it to break apart from pure ignorance. Someone recently told me not to run or be “too active,” because that could do it. But what is too active and was isn’t enough? And what is a major versus a minor cut? I simply have no clue.

    And more importantly, what precautions besides wearing compression socks do I need to take? My flight to Prague is 10 hours. I know some people have flown to Spain with a DVT and had no problems and to go on my trip, while others are saying don’t go.

    My doctor basically said as long as I get to a therapeutic level in my INR, can stop the warfarin and Lovenox and start xarelto, I should be able to go. But then what? Am I in the clear with the DVT? Do I no longer need to take precautions or be afraid of it dislodging or getting another clot, except not to cut myself? What would warrant a trip to the emergency room abroad and what wouldn’t? Is diet really that much of a concern? I feel like a hypochondriac but then again, I feel like maybe I’m being too dismissive and not as worried as I should be.

    Does anyone have any advice or experience or guidance or words of caution I am unaware of? Any tips for travel, the flight, what I need to be aware of or afraid or, and what not to be? I am literally in the dark and only 21 days from my big trip. I want to do the right things but I don’t know what they are. And for some reason I feel like I’m doing everything wrong. The doctors haven’t seemed super concerned so I guess I’m not. But their lack of concern has resulted in a pure lack of understanding or awareness of what is happening, or what could.

    Thanks for listening.

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