Sticky Blood-Hughes Syndrome Support

DVT"S AGAIN

DVT"S Again - Friday 12-15-17 in ER 6 PM to 2 Am- results

DVT clot in back left thigh - broke and traveled to behind left knee - broke again and lodged yet again above left calf . Pain was beyond beyond - all my pain meds wouldn't even begin to stop it .

Enox the next 6 days - imagine being done as soon as appointments can be made . also left axillia node left side chest to be imagined CT / with contrast not sure when this will be done and of course this morning as DR's get to their offices everything can change LOL .

Will call all them this AM after 8 :00

Merry Christmas presents to me !! :-)

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Oh Jet, so sorry to hear this. Crappy gift and you can’t return it. Hopefully they will get your Scilla imaging done while you are there. Good wishes keep us posted🧐

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*axilla

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Thanks Merry Christmas to you .

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Oh dear, I do hope you are better as soon as possible, that does sound very difficult indeed for you. Let us know how the doctors get on with sorting you out again. Merry Christmas to you also. MaryF

ps

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Merry Christmas to you also and to all of yours .

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Ah, Mary... so full of Christmas cheer! Now I’m inspired to go out caroling! 🎼Fa la la la la!!!!!

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You can skip across the country and sing for us - and stop along the way at Gina's and others !!!! we would love to hear you .!!!! LOL

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Lol! You would NOT love to hear me sing!!! I’m totally tone deaf! Not a talent I have! I’ll leave the musical talent in Mary’s capable hands! By the way Mary... looking forward to another beautiful video this season of a concert if you could grace us with one- so here’s to your health!

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My poor little Casey - he has been very sick little man since 12-1-17-a couple close calls already - up and down it seems with him and with me because all Dr's offices were closed when i went to ER on Friday .

I had a couple appointments today but no scheduling for CT or ultra's sounds yet .

It's 4:00 here now and they can call up to 6 or 7 tonight . The Coumadin clinic has called today and knows I am off the jantoven and on the Enox. I expect my top 7 heavy hitters { Doctors } will all be involved by Wednesday . and i still have 5 more appointments that i had before Friday That are still good to go .

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Take real good care of you two!

I will think of you and hope everything will be all right very soon.

Hugs from Kerstin in Stockholm

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Merry Christmas To You and All yours my friend

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Big Hugs to my Swedish beauty !!

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I am so sorry to read this. Both you and Casey. (My daughter has adopted 2 chihuahuas who were somehow living in the wild and keeping themselves alive: Paxton and Jasper. THey are both extremely loyal dogs.)

I do hope these clots melt away leading to happy rest-of-holidays.

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Oh Jim. I’m so sorry. What is this craaaazy disease?

I’ve started adding a jr strength aspirin. Now I can’t say you should. And I’m going against my hemes advice . My neurologist prescribed plavix. Heme doesn’t want that.

England is having the same controversy.

It is certainly a bleed risk.

It’s more if you are having neurological- small vessels in brain give you issues as well- Migraine? Are you? Stroke risk? Neuro cog?

I’m definitely finding it easier to do Finger prick tests- better quicker flow.

Less headaches.

I’ve not had my heme appointment- I think all hell will break loose when I tell him. I’m on day 12. So far so good. I’ve not had a bleed but I’m on a fine line.

I’m on 16.75 mg / 17 mg Coumadin alternating nightly.

Can you ask about checking you for a chromogenic Factor x activity assay through Mayo Clinic lab? It’s a “ true value” INR for APS patients. You might have a lower INR than your vein value is showing.

I’d like to know if your hematologist has heard of it, and what her/ his take on this test is. Google it please.

I keep my INR at about 4.2

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Hi Kelley -- thanks for the reply - neurological , i have 13 white matter { lesions } in the brain -- Migraines , sight , balance , Memory . Depending on where in the brain I am having the flare dictates how the effects will be. I will ask My Hemo about the chromogenic factor X .{factor 5 i think was tested } Kel i have 25 Dia. problems listed with all my Dr's. all accept one that states " Very Complex Medical Patient see attached Pages " 26 of them . Ha !! So there is a lot more on my plate than the APS, so a lot more comes into play with me.

i had a battle for 3 years to get my Range for INR to 2.5 to 3.5 . When i used the triple positive Dia. with letters and posts from here as weapons that she finally gave in ,Isn't it odd that I had just left her office and was driving home when i had the first attack , it's an 88 mile trip to that hosp. for me {the other two are MUCH closer .

I take 1 - 5 Jantoven { coumadin } I test every three days but never over 7 days . I am not a Canaanite for the finger test . That was ruled out 6 tears ago . I can only take acetaminophen [Tylenol } and they just took that out of my Oxy's when they upped my dosage on them , they did keep my Morphine the same as well as my Gabapentin , Baclofen and Tizanidine.

I will look up the CYX factor and take it to her or if i can find a site , send her that .

She is very good { we do battle a bit - but she will band and listen } - she is considered one of the top in the north east here.

Her nurse has been in contact with me twice since Friday And they are awaiting the results of the tests being done down here at Concord Hospital as soon as i get appointment's for them and hope i don't have to travel back up to Lebanon where she is .it's about $41 dollars in gas .

My coumadin clinic i go to down here , she is great and if i want to keep my self at 4 she is cool with it so long as my Hemo up in Lebanon doesn't get wind of it , she calls all the shots over ALL my other DR's when it comes to my blood.

If i drop below 2.0 then it's back on the Enox for 7 days and then the bridging back like i will have to do in 3 or 4 days coming up .

C & J

Big Hugs and a Merry Christmas to you and all yours !! :-)

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Hi Kelly,

Are you living after that "Factor X activity" on Day 12? Do you take 17 mg Warfarin per day? Also a baby-Aspirin every day?

Are you feeling ok now and no more micro-clots showing up?

Fingerprick-test at home I keep at an iNR of around 5.0. I am seeing my Hematologist on January 9.

Kerstin

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I’m needing to keep finger prick at 6.

My standing orders for chromogenic Factor x ( CFX ) Assay is about twice a week. It’s given in a percentage then converted to tell me my “ true INR. Usually it’s between 16 and 13%

If my FP is 5.7, it means my TRUE converted INR by means of the CFX is actually 3.8! This is why I want more people checking for this who are LA positive.

Now I still have not seen my regular hematologist yet, but he told my nurse “ ok.” I see him Jan 3.

Maybe this is why I keep clotting.

I saw my neuro Opthomologist last Tuesday. A tiny bit more thinning of the nerve layer had occurred. Not at all drastic. But that’s only since September 12th.

He does not have any idea what to do or how to interpret these tests.

I’m still clotting.im having micro clots- but also large DVT also at end of November.

Maybe Imuran- ( azathioprine) but I’m trying aspirin first. I do not want to suppress my immune system in any way until I just don’t have any other choice. If it is determined my INR has been lower than we have thought- this is great news- and maybe it’s the same situation for Jim and others.

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And yes Kerstin- right at 17mg a day now- and the baby aspirin. I think studies show a little better than plavix. With very aggressive cases of APS can need both as well as statins- which I’m also prescribed. ( I have also hyperlipidemia.)

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Hi Kelly,

I have difficulties to understand this but no wonder as I am not a Doctor at all.

I am going to see my Hematologist on January 9 and will see if she understands this with the low INR as to CFX.

How do you know you are still clotting today when you follow the new regime with CFX?

I get "symptoms" when I get too low in INR. Perhaps I am clotting but I do not know. What I have to do is to keep my INR in range and that I do rather good as I selftest every or every second day at present.

If my FP is 5.7 my vein-value is around 4.2. That is not so far away from your 3.8.

We have learned these numbers by taking a lot of doubletests during the years. If my INR is very high the difference is bigger to the vein-value as I have said several times.

I also take statins but I did not know it had to do with the thinning of the blood.

Kerstin

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Sorry Kerstin,

Having troubles with my eyes, “ jumping” a little bit . Oscillopsia a little bit today. See response somewhere below to you regarding CFX ( Chromogenic Factor X Assay.) I’ve had 3 draws now. The other two have come in at 13% - meaning my true INR was HIGHER. That’s because I’ve increased warfarin.

My main hematologist- treating- I’ve not yet talked about this test with him yet- he’s been gone to a conference. My GP was supposed to call him before he left for this conference but did not- now I have to wait to see my main hematologist until Jan 3rd. I dont understand it much myself except what I’m researching... rather frighting as in not a doctor. My GP asked if I could call the lab as he did not have time. I did- they would not talk to patients. I totally understand! I just need my hematologist to see me soon. I’ve got the general idea though, but many specific questions.

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No, statins do not thin the blood to my knowledge, but I believe the idea is to somehow help with control of phospho lipids in general somehow. This is all very new to me.

I’ve not yet started taking the 40mg Of pravastatin ( Brand is Crestor) in my medicine cabinet.)

I’m not sure I quite agree until I get my lazy thyroid sorted.

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I was told by physicians from Jefferson University hospital that the statins do something to decrease the phospholipid anti body production, how I don’t remember/ know. Cindy

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1. This English is very technical.

2. I do not believe I’m clotting since increasing my INR since November 27th.

3. My first chromogenic Factor X Assay was drawn on Monday, November 27th.

That day in the ( consultation) hematologists office my finger prick value was 5.7

My “ traditional” standard vein value was 4.9

My CFX was 16%, which meant my “adjusted vein value “ or TRUE vein value was actually 3.8

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How many trips did it take you to Dr's or Lab so far ??

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for the CFX process ?

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Still a mystery, happy holidays Jet

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Hope you get feeling better Jet!

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Thanks H C -- Have a Merry Christmas and a safe and happy New Years

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