DVT AGAIN

WE don't want to hear the DVT thing - I was sent to the ER last night for pain and weakness left arm and pain behind left leg at the knee. This is where i seem to clot , last bad one May of 2015 , developed very fast .

Popliteal vein - this was found after a very difficult Ultra sound , 3 different heads were used. to finally get it clear as possible . An EKG was also done because of concern of left side of face went k numb Saturday night .

I have just contacted my Hemo specialist to see if Enox should be started as pain in left leg is traveling.

Waiting for a decision on just what they want to do from here - That hospital is 70 miles away fro me and most likely i will get the DR. on call . So if i can get the go ahead to start Enox till I can get to my Hemo tomorrow that would be good. She has been very concerned with my clotting and we have talked about oral Anti's of which I am not excited about,she is good about discussing ops ions and knows how I feel about them . I have many problems and starting something like that scares me. So i wait I guess with hopes that i can get started on Enox as the safety net . Hasn't been the best start to this new years :-) .

41 Replies

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  • Do you mean enoxaparin? Best of wishes are sent your way. Get some rest and stay hydrated😁

  • Oh man. And you were just sending ME sweet encouragement! "That's the good attitude, Kel! " you said.

    I'm so sorry to hear this. So you have another confirmed DVT behind that knee? Where are you now? I'm not quite clear.

  • Hi Jim,

    Sorry to hear that! Enox is like Clexane I have learnt. Would that not be ok or why do they wait? Can you do it at home?

    If that could be a solution to all your problems. You are always an Optimiste and I think you are great and I send you all luck there is to be found!

    A big hug to you and to Casey (a smaller one)

    Kerstin

  • If you have been given Celexane to inject what were the instructions when to do it, don't they give you the freedom to do it when you feel the need. I also don't understand why the Hospital didn't tell you to inject when you were there and they discover the DVT, what did they say to do? It seems to me that people who don't understand our disease are so hung up with the risk of bleeding that they forget that our blood is too thick to start with!

    Jim ring whoever you need to and refuse to get off the phone until you get and answer. If I were me Id tell them that unless you hear by x time you will give yourself a shot and hope that brings a response!!

    Sorry you are having all this worry on top or everything else. ((()))

  • They at ER didn't know what APS is - I inject Enox in abdomen with what ever they tel me to take . SO ER said your INR has come up into range {after i explained APS and usual protocol and instructed me to call PCP {ones in charge of anti coagulation} BUT now they are going to send me to Hemo UP in Lebanon [DEB } Dartmouth Hitchcock , very good hospital and where most of my 20 DR's and specialists are located .70 miles away . NOW Deb and i had this very same conversation about this clotting problem before and her legal need to act on this problem and I DON'T want to go to these new untested anti's NOT with my medical problems .the warfarin {jantoven } would be OK if i could get PCP office down here to keep my INR higher -I believe this whole clotting problem is because i was left to low for 2 weeks of testing every 3 days and i told them the way i was feeling and NOT coming up above 2.5 that we are asking for trouble and it happened - I am not an easy patient to have to deal with , not my altitude just because i have so much to deal with and so many other Dr's that are needed, high responsibilities and it is so hard and they are so concerned that this stuff happens- they la baled me an enigma and now at the end of my 26 Dia. medical problem list it says " an Extremely medically Complex patient see attached Memo's !! So I need to get into the rain room and go and get the reports from ER and The Ultra sounds and get them so I will have them in the case i have to drive to Lebanon and see Dr deb in Hemo .I think i have answered you L .

  • WEll I got the Dr.on call{spoke broken English -- h ha } But we discussed the Enox and with out Deb {hemo } there he was reluctant to give me the go ahead last night because my INR had come up and i am on 4's and the questions about the popliteal vein I can't answer right now because other then the conversation with one of my INR nurses is was unclear {not her fault either } as to in that vein?? and DR on call the same question SO this morning I can go to records at Hospital here and see just what it says{already contacted my friend in records YAAY }And should be able to get them this morning and read it myself -Deb up in Leb won't have them so I may have to go to Lebanon anyways so having the paperwork BIG plus .and don't know what they are going to say about numbness in left side face -- EKG showed nothing but a good heart !! I explained to ER DR it's my blood not heart at this point anyways.So i need to jump into RAIN ROOM and start to get ready for today's events { not to excited at this point . WELL guys to answer what I can of questions -- i have 40-80-120 ML syringes on hand at all times ,my PCP's office is limited as to my Anti-coagulation , so the Hospital in Lebanon {70 miles away } DR Deb mu hemo has to take over if things like this happen {AND YOU KNOW OUR HISTORY OF THAT } so we had at one point using the enox ,Clexane etc and because of being a triple positive and the 20 some odd other medical problems and the meds for them that they are not strong enough so this is going to be my battle today to hopefully stay with Jantoven { Warfarin sodium " } and to have Deb try to get PCP and hospital down here to get my range up. , now 2.5 to 3.5{but i have been to low for last few weeks !! CLOTTING } . But tjis my friends to me would be a great outcome and NOT start messing with these oral untested Anti's not with all my other Meds and problems !! I will let you know how it comes out [GOD I LOVE THIS DISEASE !!! }}} NOT!!!!!!!!!!!!!! :-)

  • I'm starting to learn that we all tell such a similar story...so unique to medicine- but so familiar to us. Same dilemmas, same vocabulary, same stumbling blocks within the system .our medicine closets must look similar. Various syringes of LMWHeparin injection strengths. Various milligrams of Coumadin. Each basket of anti coagulation regiment representing a segment of time in this difficult, scary journey. That's not even mentioning the other tag on meds for collateral issues that arise.

    "WDBWC" should now be an acronym for "we don't bleed we clot! " I think everyone here has to explain this to our nervous doctors.

    You are right. " I love this disease- NOT!"

    We will hate it together today- in honor if Jim!!!

  • sorry what WDBWC - Brain in overload mode LOL

  • "We Don't Bleed We Clot

    Just me trying to make your over loaded brain smile. We can all relate. I suggested we make our own acronym for it. "WDBWC

    Our doctors don't get how badly our bodied are clotting. Just anti coagulate us, already! WDBWC!

    ( just saves us time tying it all out.)

    Have a better, day Jim. I'm worried about the pain in your face... very worrisome. I know you must be tired. So thanks for sharing and teaching.

  • good one--This face numbness is a concern that until i get to talk to Deb {my Hemo ,she is good } it is unanswered--like you put it when the ER DR. said EKG said heart is good i said IT'S MY BLOOD NOT MY HEART!!! I like WDBWC !!!! love it . so i need to get my butt into RAIN ROOM and get those records fron Hospital down here and I may have to drive the 70 miles or so to Lebanon Dartmouth Hitch cock Hospital to see DEB - she WON"T have the results -Believe it or not it can take 72 hours - did sign a release but they won't find it - in the past I have had to come home after instructing DR's office where i was to send it to my computer so i can copy it and then get in my RAV and drive to Leb . Up there is where most of my specialist are . Great hospital and even though ME and Deb lock horns on some things LIKE MY INR RANGE and these new meds out she is a great DR for me and i do respect her and she me - she knows i have a good handle on things with the help of some in this group. and i tell her where things come from and the caliber of the people and the knowledge coming forth .

  • Please tell her to look up the RAPS trial ( stands for Rivaroxoban APS trial) out of England/ London. Guys, st Thomas- maybe London Bridge. The key hematologists working that one are APS specialists who also work closely with Professor Hughes- his referred patients . The Theo also concerns itself wafarin vs rivaroxoban ( wafarin) in various patient conditions. The trial is in vivo control. It's in the Lancet journal. I believe the admin here have it as a pinned post.

    The trial does not include other new oral anti coagulation meds.

    Drive safely, you and your Rav! Flex that foot around. Pack herbal tea or water. Don't forget to brush your teeth and wash behind your ears! Hang your towel! Wipe your feet! 😂

    ( can't let you off the hook without a small chuckle!)

  • Sorry to read this. Very sorry. Thiughts snd prayers are with you.

    Gina

  • Thank you my friend -I'm in wait mode right

    now. hurry up and wait LOL

  • Just DONT let them put you on new oral anticoagulants you are not suited. Tell them you refuse point blank to take them and point them to this trial.

    healthunlocked.com/hughes-s...

  • Thanks L - Deb [ HEMO } and I have had this round in the boxing match. she is aware of this BUT she is legally obligated to do something and i understand this BUT one big problem is she is 70 miles away and the PCP office can only treat me if i stay under 3.5 and this was working but the last couple of months i have been under out standing pressure and they know this and i was to low the last couple of weeks and i think this is the culprit and i warned them this could happen and it did { that's why they refer to me as MR MURPHY-- you know MURPHY'S law !! but now i am in this Very sticky situation again .and like i said the left face numbness has no answers yet accept the EKG came back good - i still have the left jaw tingling again.Thank You my friend-- i put a lot of respect in your input as well as others on here -DR. Deb knows my blood states -- Warfarin Idiopathic, associated with Antiphospholipid syndrome {triple positive }{ persistent+LA +ACA IgG + B2Gp1 and she is also aware of the statement made buy other DR's ={ extremely medically complex Patient } because of the other 20 some odd medical dia. problems and the meds i need for them . But i will stick by my guns sort of speaking BUT I also need to respect her as i do . So we will see and i wil let you know . Have been doing a lot of thinking while i was at the mall walking last night { Casey and I } he is such a good listener .i don't think just siting with an elevated leg is the answer I am Hyper to boot so walking to me is good. I will take a copy with me should i have to make the drive to Leb. You know i am suppose to stop and walk every half hour of driving !! it's a 80 min drive if traffic is good !!! So guess what I do LOL :-)

  • Just noticed what i typed I left out that my PCP people are down here at Concord hospital- 20 min's away -They are responsible for my every 3 day INR blood draws BUT some times I can go a week , but never any longer because of my ability to either plummet or sky rocket right out of site.I think i have told you i had a week that i tested on Tuesday at 2.4 and then on friday I was 9.1 well all hell broke lose into the hospital i went after a short stint in the ER . and in all this i didn't mention i have started having full body flares that i haven't had since 2010. they started off and on since 1/27/17 I happened to be on the phone with my BEST nurse in charge of my INR'S and i took a pic off the extent of the sudden redness all over - i had to go out side in the 15 degree weather to cool down .She was so concerned as she had never been on the phone when i went thru a full body flare . and as many times i have been with her in the office it just never happened- kinda wish it would some time so they can see what happens to us .everything but slurred speech happened on 1/27/17 but just the change in my words and awareness and state of mind if you wil was affected - that one was scary.and they have been more frequent .

  • I hope you feel better soon. MaryF

  • Thanks i do another ultra next tuesday follow up !!

  • And from now to Tuesday? Hope all is well, or reasonably well.

  • Very best of wishes. Keep your chin up. Hugs...

  • Saw your note there - Thanks

  • Why Thank You I guess ??

  • And who might you be - I am glad i touch people in all different kinda ways.

  • Wish i knew who you are - some of my friends would do this - just wish I knew. I would gladly keep you informed.

    O WELL- Deep Subject the can be dark and wet .UNLESS it be but for a wish ????

  • Terrible someone posts but won't tell who they are.....

  • Ya Witt Thanks -I have some pretty colorful friends BuT this is kinda borderline here and And my friends also know i won't be pressured so when i put that out i would think they would of contacted me - They have to know me IF this not the case of a prank by some one of my friends. Blood today and then waiting on decision if they are going ahead with a follow up Ultra on left leg - yesterday sore -was talking to my supervisor nurse, she was trying to chase down one of my Dr's at the hosp. there.Now i find out more trouble brewing : LOL jsut tuck and roll i guess -I will explain latter - Rain room and then off -- be back to ya C & J :-)

  • What is"rain room"?

  • SHOWER !! LOL

  • Never heard it called that, that's funny. I suppose you use a clam-cake for soap, lol😊

  • well Witt- second trip to ER for left leg clotting problem {follow up went better then first i guess . clot has either traveled down or it is a new one - can't tell.gone from popliteal vein but one lower in the vein after they separate.

  • Big time sucks....

  • Well it doesn't rain but it pours- Tuesday 4/18/17 Back into ER this time my other friend- Dehydration -shakes-Diarrhea- Dizzy-sweats, freezing heavy on the breathing -no fever and no vomiting [close }- everything i drank came right out - little to no urination,urine was very concentrated.Brought right from PCP 's office inwheelchairto ER. In ER Large Bags of IV - Dr. said i couldn't drink enough to hydrate myself as it passed right thru - . SO finally after DR in ER report made it to PCP i am going to GI specialists {not the one i have in Lebanon for Liver ,the hospital that is 80 miles away} this one in Concord Hospital 18 minutes away . ER DR. spoke of a few things and i asked him to put ALL in report my mind wasn't working well at that point. Tuesday The 23 rd consultation and a Colonoscopy , i have been asking about one since my inguinial hernia last Dec.That's when all this started and i have been in the ER 3 times and some times didn't go in ?? Monday morning i pick up DR's from ER notes to my PCP and what the PCP sent to G I associates .Then i should know more of what will be going on. The ER DR.told me he qwas really concerned that my kidneys are being compromised not flushing out when this happens with the APS and the organs and my liver is already having Fat deposits there.Hopefully they will do a complete G.I. series .not just the colonoscopy.

  • Hi Jim,

    Good at least that the Concord Hospital is only 18 minutes from your home. I hope that everything will work well for you on May 23!

    Take care and take a Hug from me and give a little one to Casey also!

    Kerstin

  • Thanks My friend - we always seem to get to one another . Big hugs to you also C & J

  • Oh my jet, sorry to hear about this. Hopefully Tomorrow will get you some answers. Continue to try to get fluids in. Chicken broth, ginger ale, jello, usually anything you can see through will help, beware of the vit k though. Keep us posted as to going ons. Get some sleep for tomorrow is going to be a busy days. Hugs to you. Remember we are all hopeful for your success. Keep,us in the know. Cindy

  • Won't be till Tuesday the 25 Cindy --sorry brain in overload status -- My eye teeth got in the way and i couldn't see what I was trying to say !!!! LOL should be back to you guys sometime TUESDAY THE 25 TH !!!!!!! THERE GOT IT RIGHT THIS TIME __ a mind is a terrible thing to lose --But they say "you can't lose what you never had" !!! } night all

  • My Vit. K intake is by Multi-Vitamin and my Instant Breakfast -this because of my bizarre INR bounce , which has been this way since the start of it all in Sept. i 2009 .They alone deliver 63% and more of the daily amount needed - then smaller amounts thru other sources. I also use morning drink for other meds i take

  • OOPS-------------- Thanks to all that responded , Cindy , My old friend Kerstin ,Gina , Mary , and Lynn. This morning i go to records Dept. @ Concord hospital for records going back to the beginning of this year, ER notes ,PCP notes ,INR records -to have at the ready, Gastro records from Dartmouth which i have here. And because this is a new Dr.I'll have what I call my welcome to APS file !! with all the colored highlighting , kinda of an introduction ,it has seen much use over the years !!!! i will be back here tomorrow after appointment

    Thanks Again Casey & I :-)

  • 👍again hope visit is promising, stay hydrated!

  • You are fast becoming a good Buddy -- got my records today now i have to separate and categorize-and get ready for tomorrow-they start at 1-1-17 and there are 60 or more pages !! So my friend need to get busy !!Thanks for the kind words

  • Jim, what did they end up doing for you with all this? Some how lost track of this, Cindy

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