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Thu Nov 20, 2014, 07:58 PM

Migrating Thrombophlebitis - Trousseau's Syndrome

Does anyone have this or know of someone who has it?

I was in hospital from the 4th - 15th of this month. 12 whole days. CT scan, MRI, EGD, Colonoscopy etc.
My hemoglobin had fallen to 5.1 and I received 6 units of blood. I had a GI bleed as a result of taking Xarelto for a pulmonary embolism.
Almost did me in.
The Dr said had my heart not been as strong as it is I might not have survived.
I couldn't stand and walk across the room without feeling faint or actually passing out.
So anyway . ..

I was just diagnosed and I'm in the early stages of finding out what all this means.
My MRI failed to show any pancreatic cancer and the pancreatic tail looked good (said the Dr)
I'm currently on anti-coagulant med. Lovenox 2x a day injected subcutaneously.

I have a Pulmonary Embolism, a DVT in my left arm and multiple superficial clots in both arms.
Swollen lymph nodes on the left side of my chest.

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Response to auntAgonist (Original post)

Thu Nov 20, 2014, 08:08 PM

1. {{{auntAgonist}}}

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Response to auntAgonist (Original post)

Thu Nov 20, 2014, 08:11 PM

2. You have been through the wringer.

Is there a support group somewhere on line?

I don't know anything about it, although I seem to remember Richard Nixon had some kind of phlebitis. I think his wife, Pat, did as well.

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Response to auntAgonist (Original post)

Thu Nov 20, 2014, 10:04 PM

3. Good heavens. You poor thing! It sounds like you have some good docs

looking after you, though. Hang in there.

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Response to auntAgonist (Original post)

Fri Nov 21, 2014, 02:15 AM

4. Hey, I'm kicking and reccing for you so that more people might see this.

I hope you get the answers you're looking for, and I hope you get better soon.

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Response to MADem (Reply #4)

Sat Nov 22, 2014, 08:50 AM

5. Thanks everyone! I'm trying to read up and of course I'll learn

more when I see the hemo again.

one day at a time.

aA
kesha

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Response to auntAgonist (Reply #5)

Sat Nov 22, 2014, 08:52 AM

6. I feel so sad for you that you have this illness at Thanksgiving week.

I hope you feel better soon.

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Response to auntAgonist (Original post)

Sat Nov 29, 2014, 11:20 AM

7. Thanks everyone. I'm trying to learn as much as I can but unfortunately there isn't much

information available.

My platelets are way too high and of course my iron is horrible. I've always been iron deficient anaemic so that's nothing new. I'll be getting iron infusions in the coming weeks.

I see my haematologist on the 2nd Dec. Hopefully some answers.

On a good note, my hemoglobin is higher thanks to a 'top up' last night. 1 unit of blood helped.

Hope you all had a good Thanksgiving.

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Response to auntAgonist (Original post)

Wed Dec 10, 2014, 04:45 AM

8. It doesn't surprise me that no one knows about Trousseau's. They are still doing

lots of testing.

My platelet level is starting to fall a little bit which is a good thing.
It had gotten dangerously high for a while.

I now have pain in my left side chest. I also have developed bronchitis. Yay me.

Another clot has shown up in my left leg. Not terribly worried about that as I'm already taking blood thinners and that should take care of it.
The question still remains though, how does a clot even form when I'm on a thinner. Lovenox 120 1x a day subcutaneous injection.

Ah well, just a bit of an update. Nothing really new to report.

Still hoping someone has known somebody with Trusseau Syndrome. It would be nice to know I'm not alone.


thanks.

k.

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Response to auntAgonist (Original post)

Sat Jan 3, 2015, 12:24 PM

9. I'm still unable to return to work. I get exhausted just puttering around the house.

Since my OP I've received another unit of blood.

aA

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