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kiwi Find out more about kiwi
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  • HCM and DVT

    In the thread under "Hello, my name is ...." Tim (Bluedevil) talked of problems with clots in his legs. A number of replies suggested that this was not uncommon.

    My question is do HCMers have a pattern of developing blood clots and does this put us HCMers at greater risk of DVT (deep vein thrombosis)? I've done a search of the forum but can't find any reference to this.

    I do a lot of long distance air travel for work. I travel from New Zealand to Paris twice a year - a 28 hour trip - for example, - my next trip is at the start of April - and traveled to Tokyo in January (an 11 hour trip).

    Long distance air travel and DVTs have a poor history. I have read some of the posts on air travel, but they mostly seem concerned with supply of oxygen and defibralors.

    I've never had any problems, and never taken any precautions, apart from one time when I sprained my ankle and Paris people got me to have a warfarin injection so that any bruising wouldn't clot.

  • #2
    Hi Kiwi,
    Yup, it’s me again. If I remember correctly on one of the travel discussions I posted about my elastic gym. Let’s see if I can find it quickly – Yes, it was February 21st and this is what I wrote;

    “When flying I also find that breathing deeply helps alley the effects of the pressure changes, and for years on long flights I take my ‘gym’ with me. That also helps a lot. My gym is in fact a roll of very stretchable plastic. It is about six inches wide and rolls up to about an inch thick. Unrolled it is seven and a half feet long. I can hook it over my foot and exercise my legs, one at a time, or I can keep my legs still and exercise my arms. I can also use it to stretch between both arms, but you have to be sitting next to somebody who doesn’t mind you doing that. On occasion I will make a loop, hook one end over my (unshod) feet and the other over my shoulders and exercise my back muscles. I find it tones up my muscles, keeps me breathing properly, and I’m in much better shape at the end of the flight – sometimes in better shape at the end then at the beginning. Of course now-a-days I can only do a minute or two at a time, with somewhat long breaks in-between.”

    I originally got the “gym” in an exercise class at a hospital over ten years ago, and I found it invaluable when I used to fly a lot. I don’t know where you could get one now-a-days, but I would try the local hospital’s physical therapy units to start with. It can’t be very expensive, and it’s nothing to throw into an attaché or carry-on case. If you can’t find it at any of the hospitals, try to get it from the medical supply houses that should be listed in your local telephone directory.

    If you get one, let me know how you make out with it on those flights of yours. You might even start to use it in the office during a break. Every little bit helps.


    • #3
      DVT's are actually more common then HCM and thereby you will see many people with HCM actually have them - however it is not a direct connection to the condition.

      One may suggest that due to some with HCM having small veins it may be more common, however there is no data to support this observation.

      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)


      • #4
        That is what my sister in law thinks was wrong with my brother Bob a week before he died she said he had a very bad limp a week before he died and very bad pain there also but his doctor told my sister in law over the phone it was probably that he pulled a muscle

        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


        • #5
          Like Lisa said, clots are not endemic of the HCM itself. In my case, it was atrial fibrillation that caused the clots which, of course, goes with *my* HCM. Unless you experience AF, I don't think you should be too concerned.

          If I ever have leg pain (or really, any inexplicable pain), I will insist on an arterial scan, as that's where my clots ended up. When I asked my general practitioner why, knowing my medical history, he did not think to check the arteries as well back in November '03, he basically said, "I don't know."

          The downside to this is I fear the experience turned me into a hypochondriac. A few weeks ago, I had a lot of pain in my left groin (near where the artery is), so much so I could not lift my leg to walk without feeling any pain. A trip to urgent care determined that it was likely aftereffects from having fallen on a slick floor at the Mall of America (!) during the prior weekend. Sure enough, after a day or two, I was fine but still felt sheepish for making a fuss.

          When flying, it's always a good idea to get up and move around the plane as often as you are able to do so. Also, be sure to drink plenty of water during the flight.

          -- Tim
          Life is a banquet...and I got botulism! -- Me

          If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry