Sticky Blood-Hughes Syndrome Support
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Crazy INR's persists

Well last month was the month i would love to forget -Casey being so sick as well as myself . Lost 14 pounds with out even trying, last week and a half -cramps -dizziness - memory non existing- sleeplessness - INR up - down . 21 days of Enox bridging for 3 blood clots left leg on Dec.15 TH -- very sick last couple of days INR 5.8 on Tuesday and today 2.0 -- has the coumadin clinic really concerned so back on Enox 80 ML twice a day and 7.5 Jantoven {coumadin } and test again Monday -- this sick feeling getting worse ,two hours sleep last night . This old body is getting tired of this . If i make it thru the weekend with out ER visit , it will be a miracle . I need to teach a 7 hour course on Sunday But if the weather gets as bad as it is suppose to the class may have to be cancelled , maybe this would be heaven sent . - If it doesn't Rain it pours or frozen rain it snows ????? i guess . Thought i was out of these woods --not yet i guess .

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Hang on as best as you can! Thinking of you!

Glad that Casey is better.

Kerstin

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Thanks my friend

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Wishing you and Casey a speedy recovery - let's hope this month shows greater improvement.

Keep strong. Sending big hug to you both xx

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I’m so sorry to hear this. Thoughts and prayers are travelling to NH. Take care, and give Casey a pat for me.

Gina in WV

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This is horrible. I am told by my heme here to not bridge with the dose of 70 mg of Enoxaparin for more than three days even if it’s an “ active clot” but they are in arm- which is not nearly as likely to flip as in leg. ( I got really lucky in clot site.)

You are having cramps. As in nausea/ GI cramps? Or leg clot cramps? ( you put in next to sentence about loosing weight.)

I’m worried you might me having a little bit of nerve clotting to bowels. ( probably not. I’m overly sensitive and slightly paranoid about it because it happened to me so I am super vigilant about it . But let me know and I’ll give you more info on it if you think it might be possible so I can help you guide your doctors.) it’s miserable and very hard to isolate.

You are still working? Teaching? How are you pulling this off?

Have you contracted with an on line system with a university or community college or tech school in New Hampshire ? That would be a great work around.

Thinking of your beloved Casey. No words really. Just the warmest of gushy mushy touch feely stuff streaming your direction... ( sad sad sad face here.) Hard hard time.

Hang in there bro.

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Hi Kelley - Thanks This will be my last class for the season { I hope} It is a safety course for students from 12 years of age to 150 !!! . I do about 40 to 65 students .

I do have two other instructors under me that help if i all of a sudden have brain cramps and i teach old school style i use an easel ,no projectors or power point ETC. i have had professors from local colleges that were there with grand and great grand children. and they are pleasantly surprised to see this type and style of teaching especially to the younger students .And they have sent me letters to say just that . I really enjoy it and hate to miss one as i am not sure how much longer i will be able to do it . this is my 18 TH or 19 TH years at this. My stomach issues i wil be addressing next Friday when i go to Gastro for my ultra's and fibro scans-and all the blood work So i would be interested in which you speak of your problems and what was done and also literature i can copy .My gastro is new to me and young and has the want BUT she does my Liver and i would need a referral to a kidney or other organ doctor's or specialists . So can you put together that and i will see what i can find on it -but always better to go with someone that has gone thru it . you are right on that one Sis .

Thanks from me and my little guy :-)

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Yes. I will. Dr Hughes talks quite a lot about it. I think you may have a combination of issues since you have many clotting factors. I just don’t want this “ nerve” thing over looked.

It causes little micro clots in blood supply to bowels/ intestines- resulting in Vaso congestion and paralytic ileus and segments of bowels to spasm and dis- regulate.

I was in multiple surgeries before my APS diagnosis under the suspicion of bowel adhesions. ( the thinking was mechanical ileus.)

They could see and hear I was in ileus. X rays would show the ileus. ( bowel loops would show a distinct line of separation- Air on top/ fluids on bottom) and my bowels were high pitched/ sing song.

Horrible nausea- 15 hours worth. Worse at night when laying down. Would wake me up at 2:00 am or so.

Caused gall bladder to fail. ( no stones.) caused appendix to become chronically infected.

Caused liver enzymes to be elevated when common bile duct became infected... lots of IV antibiotics to keep from going into pancreatitis when gall bladder was very sick.

It was a kind of Dysautonomia we now think. Pamine forte does help. ( Methscopolomine Bromide.) itake 2.5 am and 5.0 pm.

Having INR high ( 17mg per night now has all but stopped it now. )

When I clot, I clot every where it seems... nerves and limbs. DVT’s, optic nerves ( loosing my vision- optic nerve atrophy) spine nerves, and the paralytic ileus returns.

I had immune thrombocytopenia purpyra at 18 months old and almost died.

I’m triple positive- but very surprising- not in high numbers at all! Just enough to meet criterial for lab. I’m also positive for the phoshotydelsterines. ( so is our 16 year old son, Grant.)

My gastro is Dr Bassem Mazloum in San Antonio Texas on Data Point Drive. If your dr wanted to call him to ask any questions, I’m sure he would not mind.

I’m 48 years old..

I also have partial complex temporal lobe seizures. Diagnosed in spring 2012. We initially thought seizures were causing Todd’s paralysis to bowels... we thought a rare subset of abdominal epilepsy ( NOT abdominal migraines...) until we got the diagnosis of APS In November of 2016.

By the way: post script:

You have to be actively in ileus/ nausea to have it caught. I would always have things “ scheduled “ after the fact . I instinctively knew that if I was feeling better the scan would not show problem, even though the docs / techs would tell me other wise.

Example: motility studies/ etc.

What was happening is these tiny clots were self absorbing by the time I was tested.

My surgeon even said,” you are acting like you have a clot to the bowels. I’m checking for mesenteric ischemia.” I think he was looking for large clot. (?) I was in the hospital - but had been well for about 4 days.

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