Skinny Daily Post

Invincible.

Well, there’s one good thing about your tax dollars… they pay for this big research hospital in Washington (NIH, the nation’s hospital), where lots of lovely medical geniuses work to make medicine better, and sometimes that means doing great work on somebody you know!

Really, the experience of a not-for-profit hospital is a wholly different experience. I can’t quite process it all yet, but trust me, it is. I am well aware I am opening a gigantic can of words by bringing it up and then dropping it… but really. We need to do better.

While the patient is still not entirely the customer in this medicine, either, the patient is certainly a partner or collaborator, and that makes a big difference.

So, I had arguably the best radiologist and intervention radiologist and hemotologist in the country staring at my pasty, clotty left leg or the past few days.(Along with a horde of technologists, nurses of very ilk, and hospitality folks. Washington hospitality ladies are all the spitting image of my mom. I kept them with me longer than usual, I suppose.) I learned a lot about clots, their diagnoses and treatment, and came away with the understanding that…
0. There are a lot of undiagnosed clots out there, which sometimes kill and sometimes never cause any problems, but can cause a lot of problems later on, down the road, as we age…

1. The ultrasound tests that most of us can afford can help us deduce the existence of a clot, but it doesn’t give much information about the clotting in your veins at all. A venogram (contrast die injected into a vein in the top of your foot, + expertise, +xray) will help you understand where the clots are and what’s going on with them. Your insurance company may not pay for that.

2. Lots of medical folks and most of the rest of us don’t understand clots very well. Turns out they actually don’t melt away with the anti-coagulents. Those drugs prevent more clotting. Your body takes care of the rest, BUT actually most of the time the clots just tend to stay put and scar over, and cause narrowing of veins, or eliminate the use of that vein, and your body creates collateral veins — new routes around the clot. But these new routes don’t have the same ability to return blood/fluid that your original equipment has, and especially don’t have the valves needed for good flow, and that’s why long-term leg pain and ulceration happen with the current recommended therapy in 50-66% of cases.

3.That clots in the thigh almost always start in the calf and travel up. And that was true in my case. I had a bigger problem with clotting in my calf, but never felt it there, and might not have felt it in my thigh either, because…

4. I am officially a “variant” (Explaining my draw to X-men and Spiderman movies…), owning strangely duplicated venous systems in my thigh and calf. Probably both legs, but they spared me the venogram in the other leg. This is where things get a little too detailed to be of interest to most of you, and also makes my eyes cross, but just take away this one piece of truth. I’m more evolved than most of you… or less. Or neither.

5. Our family probably has a genetic clotting factor or two. They were able to do some of the tests, but not the important one, because I came already on Coumadin. They will give me more info in 6 months. But our family history (Grandmother’s death from pulmonary embolism, Dad’s vericose veins, etc.) x being of
northern European extraction suggests this already. High liklihood that we have and pass along a gene that predisposes us to clots. This is important for all the women in our family to remember, that birth-control pills will be especially hard on us. Also, I may not be the only variant among us… We should form an army….

7. I need more protein in my diet. I am addicted to caffiene, and need to get off of it.

8. Standing doesn’t do you a bit of good. Walking is the thing. It’s the action of your calf muscles that make your blood go, and keeps your leg veins and valves happy and healthy. Pull your toes back and point them forward often while you’re sitting or on a plane, but especially on a plane.

9. The head radiologist here thinks 10% of people who get off of long airline flights have clots that go untreated and cause problems later.

10. Be. Careful. Wearing. Spanx. Or any undergarment that restricts circulation in your thighs, but not in your knees and calves. If you feel you must wear them, get a size bigger of these garments than you think you need, and don’t wear them all day. And walk a couple of miles after you take them off before you go to sleep. I’ll be editing my I-love-spanx post to say so…

11. It’s not at all unusual for women, even young women, to get clots in their left leg as a result of the proximity of our veins to our arteries, and the way they bump together as we walk. Apparently our arteries can just beat our veins to pieces, causing a narrowing of the vein, which leads to clotting. Unfortunately, without Thrombolysis, the narrowing won’t be discovered. It should be, and should be treated through thrombolysis, and maybe even stenting, especially in young women. This is called May Thurner’s… something. And my doc made a point of telling me about it, because he wants to spread that word.

12. Thrombolysis is getting safer and safer all the time. Anybody who wants to know more about that should call Dr. Richard Chang or Dr. Don Horne at NIH. This protocol study I participated in is for vastly reduced exposure to rTpa, and no mechanical removal of the clot, making the treatment quite safe.
Their paper on the subject may be out as soon as March, 2008.

13. For thrombolysis to work well, it has to be used early, before the clot forms scarring. This therapy doesn’t work on scarred over veins.

(Just for my sibs: get ready for a giggle… but I get to join Dad in sartorial splendor with my new PRESCRIPTION KNEESOCKS! TOLD you I was Daddy’s girl! For 6 months only, but still… Yipes!)

“We mock the thing we are to be.” –Mel Brooks

Missed you guys, but I’ve been on a narrow table in an intervention radiology unit for three days… seems like without a break. Back home soon.

8 thoughts on “What JuJu did on her medical vacation

  1. Good to hear from you, JuJu, and I hope you took some knitting with you to the hospital. Lots of good information here; thanks for passing it along to all of us.

  2. Cheryl Sims says:

    Thanks for all this great info Juju. My mom has had blood clots and so now I must be on the lookout for them as well. I appreciate that you took the time to write this and share. Good health to you.
    Cheryl

  3. autumnseer says:

    I’m flying to Belgium in June and will be sure to keep wiggling my toes during that long flight! Thanks for the info and so glad you are okay.

  4. Michelle says:

    Whew. Thankful all is well. So so glad that you were able to get this good care. What you share is really really fascinating. From what you have learned, what is considered a “long” airplane flight? And is there a similar risk with long car rides?

  5. CarolAnn says:

    My nieces have 2 clotting factors, found when the 19 year old had blood clots in her lungs. The clotting is from the other side of the family, but it’s something I’m much more aware of than I was before. I am glad your clot was caught in time for you. And I’m sorry you had it at all. I’m glad you are back.

  6. Anne says:

    Glad you kept your sense of humor through it all and were able to tell us about this important stuff with your usual style.

  7. jonquil says:

    Hey! Juju’s back. In the house. Cool.

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