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Prayers and med advice

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 knightsbff (original poster member #36853) posted at 8:45 PM on Monday, August 11th, 2014

We got back from our FL vacay, had one day of recovery and mom showed up at my house in the AM and woke me up to look at her leg (she drove herself of course). Her entitle left leg was swollen and kind of purple. She wanted to know if she "should go to the urgent care" .

Amazingly they didn't find it on the first u/s, but positive d-dimmer and MRI show massive DVT (femoral, iliac, and great saph).

She's inpatient on Heparin. Admitting doc mentioned Xarelto, DH hasn't used it because he does emergency medicine. He is reluctant because it's new and the "other shoe" hasn't had time to fall yet.

We need prayers and info on management of massive proximal DVT. I have read everything available on uptodate, I would like to hear anyone's irl experience. And thoughts on xarelto or maybe we should do lovenox?

Help.

Dr PJ? Tushnurse? Anyone?

fWW 40s, BH 40s
D-day 27 Aug 2012. Kids 25, 17, 13. 2 dogs.

I edit often to fix stuff ☺️

Profoundly grateful Every. Single. Day. that I am blessed with an H with strength, integrity, and compassion, and that he decided to try.

posts: 1840   ·   registered: Sep. 17th, 2012   ·   location: Deep South, USA
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Pentup ( member #20563) posted at 9:06 PM on Monday, August 11th, 2014

Friend had this, not quite so massive, but big. Have they already put in a screen? Has she seen an interventionalist?

I don't know that med. lovenox for my friend. Long term issues because she waited to late and they could not restore flow to the main vein that was impacted.

Sending prayers for healing!

Me- BS
Him- FWS (I hope- F)

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 knightsbff (original poster member #36853) posted at 9:12 PM on Monday, August 11th, 2014

No filter. No interventional rad in our tiny community. Wondering if we should be considering transfer to higher level of care but not sure if it would fly for DVT???

fWW 40s, BH 40s
D-day 27 Aug 2012. Kids 25, 17, 13. 2 dogs.

I edit often to fix stuff ☺️

Profoundly grateful Every. Single. Day. that I am blessed with an H with strength, integrity, and compassion, and that he decided to try.

posts: 1840   ·   registered: Sep. 17th, 2012   ·   location: Deep South, USA
id 6905971
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lieshurt ( member #14003) posted at 9:19 PM on Monday, August 11th, 2014

Sending prayers hun

No one changes unless they want to. Not if you beg them. Not if you shame them. Not if you use reason, emotion, or tough love. There is only one thing that makes someone change: their own realization that they need to.

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Pentup ( member #20563) posted at 9:34 PM on Monday, August 11th, 2014

I would transfer. If an interventionist can get that opened up, huge difference I quality of life down the road.

Also, no filter to protect lungs, etc.

If it were my parent, I would be asking for a transfer.

[This message edited by Pentup at 3:35 PM, August 11th (Monday)]

Me- BS
Him- FWS (I hope- F)

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purplejacket4 ( member #34262) posted at 2:50 PM on Tuesday, August 12th, 2014

Xeralto is fine. I've used it on several patients. It's no more risky than coumadin but with no constant INR checks. You also don't have the accidental OD problem.

Me: BS 50
Her: FWS 53 (both family med MDs; together 23 years)
OW: who cares (PhD)
Dday: 10/11: 11/11 TT for months; NC 8/12
Limboconsiliationish
"band aids don't fix bullet holes" Taylor Swift
I NEVER mind medical ???

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nowiknow23 ( member #33226) posted at 2:56 PM on Tuesday, August 12th, 2014

((((hugs)))) Keeping you all in my thoughts.

You can call me NIK

And never grow a wishbone, daughter, where your backbone ought to be.
― Sarah McMane

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tushnurse ( member #21101) posted at 4:57 PM on Tuesday, August 12th, 2014

Yah, I'm going against PJ here on this one.

Xarelto is like Plavix in the fact that you don't know how well it is or isn't working, and there is NO quick reverse for it. With Coumadin a wallop of Vitamin K and a if needed a few FFP and good as new. It may be the old nurse in me, but I had a couple of patients that scared me and went through quite a bit of product from taking Plavix back when it was new.

With your H being an MD, and I would encourage him to talk with the PharmD he works with, and Cardiology to get their input on the thoughts on treatment.

I am a fan of the filters too. Not a big deal to place, and solves some worries. If you have an IC team there (interventional cardiology) they should also be able to place it.

Coumadin is not recommended for long term therapy for DVT's anymore though depending on size and location. If cause is known and some other factors.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

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sisoon ( Moderator #31240) posted at 7:34 PM on Wednesday, August 13th, 2014

(((hugs & best wishes)))

fBH (me) - on d-day: 66, Married 43, together 45, same sex apDDay - 12/22/2010Recover'd and R'edYou don't have to like your boundaries. You just have to set and enforce them.

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Edith ( member #38337) posted at 7:40 PM on Wednesday, August 13th, 2014

My DD32 had a massive embolism in her mesenteric vein 6 yrs ago, was on Lovenox at first (expensive/injections), then Coumadin (constant INR checks), and finally I mentioned to her hematologist Pradaxa. He switched her, and she is doing MUCH better. No dietary restrictions like Coumadin. I would check with insurance carrier, as I believe this is still an off-label use for Xarelto, as it is for Pradaxa. They are mostly intended for A-fib patients.

Prayers for your mom. By the grace of God, I still have my DD.

E.

The light shines in the darkness, and the darkness can never extinguish it. John 1:5

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jo2love ( member #31528) posted at 10:02 PM on Wednesday, August 13th, 2014

Sending prayers and good thoughts.

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 knightsbff (original poster member #36853) posted at 12:21 AM on Thursday, August 14th, 2014

Thank you all. She refused Coumadin at first but is started on it now. I too had concerns about the ability to reverse if needed. We have no (real) IC here and our one cardiologist does procedures whether they are needed or not. (He put a internal pacer in a 19 yo who was hypokalemic...)

Her DVT is massive and proximal plus idiopathic...so a candidate for long term therapy. She will follow up with vascular guy in a decent sized city an hour from us after d/c.

We appreciate the prayers and the voices of experience. I have been loosing my mind researching all this stuff and Knight has been overwhelmed at work. He's talked to everyone available here has been trying to keep his head above water at work at the same time.

She's still doing well and is in pretty good spirits. We have had some drama that I haven't had the strength to post about yet with her NPD/sociopath husband and his crackhead harem. I'm just trying to keep my focus on my mom and my family right now (kids started back to school this week).

I cancelled scouts and meetings with the church auxiliary I am heading up. I'm in survival mode at the minute and will make apologies to everyone later....

fWW 40s, BH 40s
D-day 27 Aug 2012. Kids 25, 17, 13. 2 dogs.

I edit often to fix stuff ☺️

Profoundly grateful Every. Single. Day. that I am blessed with an H with strength, integrity, and compassion, and that he decided to try.

posts: 1840   ·   registered: Sep. 17th, 2012   ·   location: Deep South, USA
id 6908825
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Kajem ( member #36134) posted at 2:18 PM on Saturday, August 16th, 2014

((((((((Knightsbff)))))))))

I trust you is a better compliment than I love you, because you may not trust the person you love, but you can always love the person you trust. - UnknownRelationships are like sharing a book, it doesn't work if you're not on the same page.

posts: 6708   ·   registered: Jul. 15th, 2012   ·   location: Florida
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Schadenfreude ( member #43075) posted at 3:08 PM on Saturday, August 16th, 2014

Coumadin patient here. Other than the fact that my dose is constantly for reasons I don't understand it's no big deal. I had 9 or 10 clots in my leg and that was the only time my nephrologist got real excited. Usually he was Dr Cool, but he told me stat exam via ultrasound and gave me the option, thankfully, of immediate hospitalization or self injection with Lovenox. Ouch. But I sure didn't want to be in the hospital.

The benefit, such admit is, of dialysis,,is that blood draws are absolutely painless. They are done through a lead in the tubing leading to the machine.

I can't take Xeralto.

The lesson: it goes away. At least she didn't develop pulmonary embolism or have a stroke.

Has she seen cardiology? Atrial fibrillation, a form of irregular heartbeat, can cause blood clots. That's what happened to me. A fib is often treated with drugs.

Or maybe she was sitting too long. Any long car trips or airplane rides for her?

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Jen ( member #26584) posted at 11:20 PM on Saturday, August 16th, 2014

Xarelto is great "new" drug. The doc I work Rx's it quite a bit, as a long term management therapy. The big risk with it is bleeding, if pt is prone to bleeding, has some sort of diagnosis, then Xarelto is prolly not the best choice. Because it can't be reversed, coumadin apparently can be reversed as far as excessive bleeding goes. But barring her having a diagnosis as such or being in some sort of accident that would cause extensive blood loss, it is a great drug. PT's love it cause they don't have to have the finger checks all the time and the dosage adjusted.

There are at home testing machines for those on coumadin but they are a bitch to get approved through ins. Home health can come out and do her PT/INR checks in the home as long as she stays home health qualified.

I don't know much about inpatient treatment - They may start discuss placing a filter, there has been some recent controversy over one of the filters that are used, and I believe it is the one in the area of her DVT, but I'm not sure.

An internal medicine doc would be my choice for her PCP and a cardi doc who specializes in DVT's and clots ect ...

(((hugs)))

Me former Booger Bear ...
https://youtu.be/1TcLw3TOIN8
Hand Me Down MatchBox 20
https://youtu.be/iFdOAyyn76M
Love Falls by HellYeah

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purplejacket4 ( member #34262) posted at 11:29 PM on Saturday, August 16th, 2014

Xeralto IS FDA approved to treat DVTs. With Pradaxa it is off label.

Believe me if someone has insurance we use Xeralto. Yes it has bleeding risks but I've had several people DIE because they fell or were in a car wreck and they bled out too fast to give them Fresh frozen plasma (which reverses coumadin immediately) or vitamin K that takes days. But hey don't trust me I'm just a physician who practices actual hospital medicine and just spent the last two weeks treating this VERY thing. And I'm pissy too.

Me: BS 50
Her: FWS 53 (both family med MDs; together 23 years)
OW: who cares (PhD)
Dday: 10/11: 11/11 TT for months; NC 8/12
Limboconsiliationish
"band aids don't fix bullet holes" Taylor Swift
I NEVER mind medical ???

posts: 3013   ·   registered: Dec. 20th, 2011   ·   location: Here
id 6912563
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Jen ( member #26584) posted at 12:06 AM on Sunday, August 17th, 2014

Well alrighty then ....... the Dr. has spoken and I will quietly go back in my LPN hole.

Hugs and prayers to you and yours, I really hope they find what works best for her and quick resolution.((()))

Me former Booger Bear ...
https://youtu.be/1TcLw3TOIN8
Hand Me Down MatchBox 20
https://youtu.be/iFdOAyyn76M
Love Falls by HellYeah

posts: 19991   ·   registered: Dec. 15th, 2009   ·   location: Where's the fucking rainbow ???
id 6912590
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purplejacket4 ( member #34262) posted at 12:32 AM on Sunday, August 17th, 2014

Sorry Booger Bear. I just figured out a forgot to take my celexa last night. Boy am I a bitch today.

Me: BS 50
Her: FWS 53 (both family med MDs; together 23 years)
OW: who cares (PhD)
Dday: 10/11: 11/11 TT for months; NC 8/12
Limboconsiliationish
"band aids don't fix bullet holes" Taylor Swift
I NEVER mind medical ???

posts: 3013   ·   registered: Dec. 20th, 2011   ·   location: Here
id 6912602
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inconnu ( member #24518) posted at 3:49 AM on Sunday, August 17th, 2014

(((knightsbff))) can only offer hugs, not advice. but know I'm keeping y'all in my thoughts.

There is no joy without gratitude. - Brené Brown

posts: 13294   ·   registered: Jun. 21st, 2009   ·   location: DeepInTheHeartof, Texas
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 knightsbff (original poster member #36853) posted at 9:09 PM on Monday, August 18th, 2014

She was discharged from the hospital Saturday and is staying with me for a while. We follow up with her MD on Thursday and I think he plans to refer her to a vascular surgeon.

The swelling in her leg has gone down some but now it's starting to be uncomfortable at the sight of the clot and she's having pins and needles sensation in the leg and foot. Before it was just numb. She also says she's happy she can feel the floor under her foot again. Hope these are good signs...

Thank you for the prayers, advice, positive thoughts, and hugs.

Dr. PJ, I think he may change her to Xeralto after 3 months... We will discuss it with him when we see him.

I'm working on menu planning right now...for a diabetic, on Coumadin, with hyperlipidemia. Any dietitians with two weeks of meals planned out for someone with these dietary needs?

fWW 40s, BH 40s
D-day 27 Aug 2012. Kids 25, 17, 13. 2 dogs.

I edit often to fix stuff ☺️

Profoundly grateful Every. Single. Day. that I am blessed with an H with strength, integrity, and compassion, and that he decided to try.

posts: 1840   ·   registered: Sep. 17th, 2012   ·   location: Deep South, USA
id 6914553
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