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Old 04-13-2013, 11:59 AM   #1
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Unhappy Limitied Diet, Limited Activity, UGH!

I am re-starting WW after being away for a year. But, I am at a very different position in life than I was at this point last year.

I have May-Thurners Syndrome (MTS), which, in short, means my plumbing is messed up. My Illiac artery compresses my Illiac vein and can cause blood clots. I had a severe case of clots in my leg and Pulmonary emboli in Sept. of this past year. They performed Thrombolysis two times and placed 3 stents in my vein. After 2 weeks in the hospital I needed a week of residential PT and OT. I was released, but limited on activity. I went through more outpatient PT in Feb-March and am doing a little better.

Basically the only activity I am able to do right now is walk, but not too far. It's maddening because before this all happened I was walking 3.5 miles 4X a week. Now walking 1/2 a mile wears me out.

AND, I will be on Warfarin (coumadin) for life so I cannot have much Vit. K a day. Basically my multi vitamin and 1/2 a cup of greens (salad, spinach, kale, broccoli, etc.) is all I can have.

Both are frustrating. I don't expect anyone here to have MTS, it's a rare condition. BUT, is anyone here restricted on activity or Vit. K intake?
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Old 04-13-2013, 12:47 PM   #2
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Oh wow! Those are definitely some barriers to overcome. Did you just find out you had MTS when you had the clotting in your leg? Do you know if you will once be able to exercise again? I don't have any restrictions like yours, but I wanted to offer some support because this does found difficult. Do you have access to a nutritionist who can help identify foods that will fill you up and give you proper nutrition without clashing with your medication?




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Old 04-13-2013, 02:55 PM   #3
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I found out I had MTS after they preformed lysis in my leg. The Intervention Radiologist that did my procedures said there was a lot of scar tissue from past clots that were undiagnosed.

I'm still in the recovery phase. They said with the lysis I would recover faster, my leg would be less swollen and there would be a better chance that I wouldn't develop Post-Thrombotic Syndrome. I haven't developed it so far, but my recovery is taking a lot longer than I imagined. I'm able to walk up and down the driveway twice a day, but that wasn't even possible before I did my second round of PT. I'm hoping my strength and stamina keeps improving.

I saw two nutritionists at the hospital and one at the residential facility. But they basically just told me what not to eat. So far I have been okay this week on WW. I just would like to eat a bigger variety of veggies without the worries.
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Old 04-13-2013, 03:41 PM   #4
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Sorry to hear about your limitations. With the vegetables, you can only have 1/2 cup of greens and then no other vegetables? Or only 1/2 cup greens, then unlimited of the others types of veggies? Either way, it's got to be difficult. But you can still do it! Good luck and keep checking in to stay motivated!
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Old 04-13-2013, 03:43 PM   #5
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I don't have exactly your same problem, but I just came off coumadin after 6 months of treatment for a DVT that developed as a result of injury (ruptured Achilles tendon).
I had a hard time with the vit k restriction, but I found I felt better overall if I continued to eat my green leafy veggies. With coumadin, as you know, you have to get your pt/inr tested frequently until your dosage is set. Please confirm this with your doc, but as long as your diet is consistent, you should be able to consume a fair amount if veggies and have your dosage set to that diet. Especially since you will be on it for life.
As for your strength, it should improve with the PT, but it might take longer than you like. I get so frustrated because now I can barely walk 1 mile at 2.5 mph, when pre accident I often did 3-4 miles at 3+mph several times a week. I still lose my balance at times because it just don't have full strength in my foot/leg yet. But, its better than last month :-)
Best of luck to you :-)
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Old 04-13-2013, 05:08 PM   #6
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I can have 1/2 cup of greens, then unlimited on other veggies.

It's very true that as long as I am consistent in my Vit. K I can eat it. But my doctor recommended no more than 1/2 cup a day, plus my multivitamin. I have been reading more on MTS forums that some people can have three small portions a day. My doctor might agree to that with closer INR monitoring for a few weeks. I will ask her when I see her Tuesday.
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Old 04-17-2013, 08:15 PM   #7
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She agreed to more Vit. K with closer INR checks! My INR was actually higher yesterday so she advised a little more Vit. K yesterday and today. I'm so glad I can eat more. Still 1/2 a C. servings, but I can have a few servings a day. Today I had broccoli with lunch AND a salad with dinner! Last night I had a salad with lunch AND asparagus with dinner! Yay!
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Old 04-17-2013, 10:15 PM   #8
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Yay! Sounds yummy AND healthy. Good for you.
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Old 04-17-2013, 10:27 PM   #9
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Hey, that's awesome!
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Old 04-17-2013, 11:47 PM   #10
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I used to work part time at a Coumadin clinic. One of our biggest hardships down here was seasonal veggies. Everyone would grow all the greens (mustard, turnip, etc) among other vegetables and eat the crap out of them while they were in season and then eat next to nothing with vitamin K out of season. It made INR's go all over the place.

Consistency is key!

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Old 04-18-2013, 11:41 PM   #11
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My favorite vegetable is broccoli and if nothing else, I will eat a small salad and broccoli year round. I know consistency is key, as I mentioned earlier. I was just frustrated with how little I could have. But now that I can have more I am enjoying it!
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Old 04-19-2013, 11:38 AM   #12
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Mrs.D - would water aerobics be out of the question with your condition? Just a thought.
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Old 04-20-2013, 11:25 AM   #13
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Jane: I have thought about Aqua Zumba, but right now I have an infection in my foot and it needs to be kept bandaged. I tried walking a mile with Leslie Sansone, but that ended up being too much. I was hurting the rest of the day and the next day. My doctor scolded me and asked me to try a 1/4 of a mile at a time, every other day. Yesterday I did so much grocery shopping (3 different stores) that I figured I covered at least a 1/4 of a mile. I mapped out shorter walks and I'll try one tomorrow. (walkjogrun (dot) com is awesome!)
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