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Sticky Blood-Hughes Syndrome Support
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Stents

Hubby has APS and was on warfarin but was removed from it to insert 2 stents. They stopped the warfarin, and then put him on aspirin after stents inserted. He then, within days, had clots block the stents. They then inserted some sort of puffer machine to ‘puff’ out clots and put him on iv heparin. Now hubby in critical but stable condition waiting for a bed in a University hospital to see if they can figure out how to fix him. Shouldn’t he be put back on warfarin? Seems simple to me. 😡

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At this point as he's on IV heparin they would not put him on warfarin until they have sorted out the problem with his stents. Once everything is stable again, with clots resolved, then that would be the time to go back on warfarin I would think.

I do wish him well and hope that he has a speedy recovery.

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Hello Debbie Sue,

I’m assuming you are in the states, as your husband is in a university hospital.

Where are you?

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NJ

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I had to change my info.

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Oh, hello there.

Hopefully now that time has passed things have settled for you .

Even though I’m in Texas, I’m actually familiar with the Princeton area. Our daughter is wrapping up schooling there now, and is staying on for a post doc. ( we bought a home there for her in 2014 knowing she was in for the haul.)

We do spend quite a bit of time there so I have a hematologist there, Thomas Blom. He is very good. He understands needing a very high INR, and understands the nuances of APS extremely well. I consider him one of the best hematologists I have ever worked with.

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Hi, the iv heparin is probably better for him at this stage than the warfarin.

I have various stenosis but one has required intervention twice. They are unable to stent as its too close to another major artery. This one has been left with a clot that they are unable to remove, this was 14 years ago, the clot is still there but stable. The good thing is that the artery is still open enough.

I've said all this so you can see someone that has gone through similar and still here 14 years later.

I wish you well and your husband a speedy recovery. xx

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Same exact problem with my husband. He was finally put back on warfarin when he got out of the hospital.

But they raised his dose of warfarin so high and so fast when he got out, that he wound up with nausea, stomach aches, chest pains, etc. from the side effects, and that put him back in the hospital. They then had to use vitamin K to lower him to check to see if it was a problem with the stents. It wasn’t.

Now they want to raise his dose high again so we can do it all over again...

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LOL! I just realized I’m replying to myself. 🙄

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I found your comments- no problem. How is your husband doing? How confident are you in his care? Our daughter is having a few minor little “questionable” issues - very minor- and is seeing a fabulous Rheumatoligist named Andrea (?) Angela (?) Gaito in Basking Ridge.

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Hubby still in hospital. They did heart cath to make sure stents weren’t blocked again. They’re fine.

Seems like the higher dose of warfarin was giving him many side effects (shot him up from 1.6 to 2.8 inr in 4 days, after release from hospital for 2 heart attacks in a week) including chest pains. So they readmitted him to check stents.

His inr is now 1.2 after vitamin k, so now they’re trying to up it and can’t release him. Very frustrating...

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What town/ city are you in?

The body does not like rapid changes to INR.

The dose should only be changed by 1/2 to 1 mg increments per week to see what changes are affected. ( unless a medical emergency is going on- then all bets are off- and patient should be hospitalized and carefully monitored under Hematologist supervision.)

Rutgers has a hemostasis dept with an APS knowledge doctor and they do have caps knowledge should you ever need it. ( ask Dr Thomas Blom about this/ Princeton NJ .)

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We’re near Atlantic City, in south Jersey. I think they raised his inr too fast, and the chest pains were symptoms he could not afford to fool around with, as he had had 2 heart attacks just 2-3 weeks before.

The first attack put him in the hospital, and they put in 2 stents. Then the stents got blocked by clots (2 different stories I got on the why of this) and he had another heart attack, and was helicoptered out to Philadelphia Presbyterian, where they replaced the blocked stents and tried a different medicine.

Finally gets out of there but not breathing well, so back into the local hospital. Its determined its a reaction to the different med, but it’s the only one they can give him (or so we’re told). Or maybe it’s now a weak heart muscle from attacks (also told that one).

Then he gets out and they set him up with Blood Clinic as they felt 1.6 was too low for his stents. They increased warfarin (plus he’s on baby aspirin and another blood thinner for the stents) . And within 4 days he had a dozen negative side effects, including chest pain, nausea, dizziness, eyesight problems, headaches, stomach aches, etc. Back into the hospital for a heart cath to check stents, but they do an inr and its suddenly 2.8. So they can’t do the heart cath.

So then they give him Vit K, inr goes down and they check stents, and they are fine. As soon as his inr goes done, side effects start to dissipate. But now he’s a 1.2, so they won’t let him out of hospital till he’s higher again.

It just goes round and round....

That’s why I think a machine would help him. It would give him some control over the raise of the inr in a more reasonable manner. These doctors deny side effects of warfarin, yet the Mayo clinic has a full list. And the body can eventually adapt to some of the side effects, but not all at once while maxed out on warfarin. 😡

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It’s certainly a lot for his poor body. (And you must be very worried.)

Most medicines do affect the INR- even Tylenol!

So lots of interactions to look out for if new medications are suddenly added or taken away. I’m sure doctors are watching for that- they are very accustomed to warfarin and drug interactions.

Is his INR set at the 3.5 - 4.0 range?

I hope you both rest well, and for now, until he stabilizes I suppose it’s best to have frequent vein draws anyway.

Steady greens- same K values . Cooked spinach have a very high K value. Broccoli is in the middle and asparagus and green beans are quite low.

If the INR is too high- spinach it is!

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Not sure what it is set for now. When cardiologists thought it was too low at 1.6, they asked his hemotologist to raise it. Hemo said it was fine where it was. So Jimmy went to the Blood Clinic instead of the hemo. Hemo went underboard, Clinic went overboard. He’ll now be looking for another doc to handle his warfarin prescrips and inr as soon as he can get out of hospital.

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Sorry to hear all this awfull stuff!! 😳

If he is on other blodthinner that cant be messured, maybe this is why the inr is okay low?

I hope all the truble is over soon 🙏

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Hubby is now threatening to sign himself out of the hospital as they’ve only gotten his inr up to 1.5 from a 1.2, and the doctor says its not high enough to release him. He’s very disgusted.

I don’t understand how the Blood clinic could take him from 1.6 to 2.8 in 4 days, yet the hospital can barely get it raised on double doses of warfarin.

The other 2 blood thinners he’s on are baby aspirin and Brilinta 90 mg. 2x day. He was put on the Brilinta at Philadelphia U. after they put in new stents when the locally inserted ones clogged with clots. One of the doctors said the Plavix was the cause, either due to his blood thinners or his aps. So they switched him to Brilinta.

I told him they need to call in the Blood Clinic. They’d get the job done. (I hear the Ghost Busters song in my head. :-) )

I wonder if the vitamin k (fat soluble) they gave him 3 days ago is holding him back...

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Debb- now I think my comments are going directly to you- please see below. Apologies for not responding directly to “ reply “ . I thought I did. Look below for Dr Thomas Blom- phone number

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My understanding is that the vitamin k that hospitals give can affect the warfarin’s ability to be metabolized in the body at normal rated for up to 12 weeks. ( I do not know specific info on this and I’m sure it has to do with half lives of half lives of the vitamin k) but this information is from an APS Specialist Hematologist at the royal Liverpool Hospital.

I can tell Tell you that my APS Specialist Rheumatoligist, Dr Jill Schofield, told me that APS patients are 4 times more likely to clot as a complication of APS than to bleed while on anticoagulation at Target range than to bleed.

These are statistics as best I can tell you at this moment, and their sources.

I think he needs to either stay where he is, or perhaps be transferred to Rutgers. ( call and ask about the hemostasis unit. In fact I’ll look that up quickly for you. )

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I am not able to pin point the exact campus in New Brunswick. I do know it’s associated with Rutgers.

I suggest if you and you husband think it’s a reasonable option ( as I think leaving AMA is not a reasonable option- it can also ding your insurance by the way ...)

you have the doctor in charge right now call Dr Thomas Blom in Princeton New Jersey.

Dr Blom’s number is:

(609) 785-3626

The doctor you are working with can ask Dr Blom specifics about this thrombosis unit he puts his difficult APS patients in. Maybe Dr Blom can take over as the Hematologist from there. (?)

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Debb- just replied above-

I’ll tag you here on thread specifically here So hopefully you will see this more quickly.

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Princeton is almost 2 hours away. Neither hubby nor I could drive that far. We both have eye problems.

I’ve talked him into staying another day. Hopefully, they can raise the inr another .3 by tomorrow and at 1.8 they should let him loose. They’re giving him 9 mg. Warfarin each night. They gave him a xanax to calm him down, and I suggested he work on the nurses letting him have a shower, which will also make him feel better.

Over the past 2 months, he’s probably spent at least 2/3 or more of his life in a hospital. He’s getting real tired of it...

Over the past year he’s spent weeks in the hospital for hernia surgery, gall bladder removal, blue toe, infected stripped varicose vein and diverticulitis. He was also set for a nerve block on the defective hernia repair, but then had the first heart attack.

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I’ll keep that info on Dr. Blom though, in case there appears a way to get him up there. You never know. Thanks for the info. :-)

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Yes, that would be a lot of driving.

Does he have a Rheumatoligist in Atlantic City?

Often thyroid issues and Sjögren’s syndrome go hand in hand with APS, and thise conditions- chiefly a low thyroid can cause the gall bladder to act up. ( often with no stones, just low ejection fraction.)

I had this happen at age 29, and had to have my gall bladder removed. Same scenario with my sister.

Something to look into when things are calmer- but it may help you sail smoother waters. That and having a look at the vitamins/ minerals for APS patients. That article the admins posted under “ pinned posts” section here on forum. ( on cell phone scroll to bottom of page.)

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Also... tell him hello- and I’m glad he’s staying in a little longer. I’m sure he’s fed up with all of this- but when he gets the right balance- he will feel better. The INR getting set correctly will be key. Keeping it there will be key... and will be challenging.

I think he will be a candidate for home health services for a while . They can draw him for INR.

I’d say twice a week. This is one good reason to have stayed in the hospital one more day- let’s problem solve this! No driving at all. You can both catch up on sleep for a while and have nurses come to home. No driving at all.

Can that be discussed as part of his plan?

What about Lovenox ( enoxaparin) as bridging protocol at home?

Keep it out of light, and in a cool, dark and humid free environment. I like brown paper bags .)

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I don’t see any ‘pinned posts’. I’ll try to find them.

But his rheumatologist was pretty good. He’s the one who originally diagnosed Jimmy with aps after his stroke. But he doesn’t have privileges at this hospital Jimmy is in, or I’d ask him to stop by.

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Found the pinned posts. Thank you. 💕

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Show your local Rheumatoligist the following:

ghic.world/

I’ll put another on for you. Also, Debb, as this is so specific now, to just us, and we are having to wade so deep to bottom of this thread, let’s switch to the private message section of this . If you look at the top of your screen, you will see the little “ talk bubble icons” across the top. ( third from left.) it will light up there indicating you have a private message in your “ in box” there. I’m going to send you one now, so we can communicate now about this very specific issue as it’s just pertaining to us. Ok?

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Definitely agree in the 2x weekly blood draw. Good idea! Especially with the potential vit. K build-up....

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