Sticky Blood-Hughes Syndrome Support
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Allset {I THINK HA HA }

Wel after 3 days of phone calls misinfo and no Bridging plans i think we just about have it for my hip injections on tues.6-5-18

A ] we now have a bridging plan -

B] we know what is in the cocktail i will be getting HORAY !!

C ] just got to confirm what i will be sedated with and can i take just a couple of meds before i leave the hose at 5:30 AM Tuesday Morning .

D ] have co pilot all lined up to wheel me out of hosp{if needed } and drive me home { I am a back seat driver } M will rapp me in the head if I don't behave LOL .

Now Almost finished just Mondays 2 questions and stop at anticoagulation Clinic to make sure we are on same page sort to speak ?? That should be E shouldn't it :-) o well

I won't ever be running or jogging but who knows maybe a fast walk ???????? HMMMMM

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Hi Jim!

I am so glad for you that the mess is cleared up so to say.

Wonderful news as I know how much trouble you have got!

Kerstin in Stockholm

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Will be all done and dusted soon.They will look after you

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Good luck! im off to Clevland tomorrow for a total knee replacement Monday.

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Hi Gina,

I wish you luck with the knee replacement. Bridging I suppose is ok?

Thanks for the words about my paintings also! Perhaps I dare try soon.

Let us hear how it goes for you!

Kerstin

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Did i tell you Kerstin I found all 3 or did you put them back on for your mentally challenged N.H. friend ?? LOL anyways they are great !!talent talent talent !! Paint me a new body complete with functioning brain :-)

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To good health Gina

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Hope you’re feeling better after the surgery!

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thanks. but post surgery is what it is. And I know I ‘ll be better in a day or two.

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Thanks .

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How did things go { if i don't have my days a mess } hopefully things went well for you -and you have your lap top with you as i know your having a mini vacation . get back when you can and maybe you have my number with you give a shout . best to you my friend C & J

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How are you doing post surgery Jim?

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Hi - well in Therapy - coming along they are still sore at times and lower back and upper thighs and knees -Therapist and Doc's say it's because these other areas are compensating for hips ?? - i guess that's it because they did that before procedure so - i go to therapy twice a week for 3 or 4 more weeks to stretch and build up muscle and gain flexibility . I try to stay of pain meds if i can on therapy days to be able to better access pain and be able to pinpoint it. But all in all i am fine thanks for asking

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Keep on keepin on, here’s to rapid progress and being pain-free

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What cleveland ? is there a cleveland in your state or Cleveland Ohio ?? If Ohio , Is this at the knew autoimmune place you went to - i would think not BUT ?? I wonder if the New Auto place take body donations for study. Or would they want my blood to study as Duke said they think my blood was the rarest they had encountered or second - I sent all my records down there and they ran out of money and then i contacted them again and they were supposed to send a check to Concord hosp. for blood draw and dry ice packing and shipping but they never did . do you still have contact info on the Auto clinic I would like to talk to them . .And have you ever heard of labs wanting APS patient organs for study?? WELL this was originally supposed to be to Send WELL WISHES for you for Monday . are you going to stay at Hosp. or an out patient ?? I will be coming home after hips so long as no problems. Let me know how things come along with you Isn't a complete knee more in depth than a total hip ?? I don't remember .?? brain Cramps.. Did you guys get effected by all the flooding down there -- up here we are short on rain by 5 inches i think it is .

Best to you my friend and let me know we can swap -stories !!

Hugs from Casey and I

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Im going to Cleveland Clinic. I could have gone back to Duke where I had successful hip replacement, but since I have become a Functional Med patient at CC I decided just to consolidate care there. Dont know much about Duke research into autoimmunity. And I willadmit I was a bit turned off that Duke heme- NOT Ortel, but forgot his name — decided in absence of positive blood tests( results’lost’ as I have recounted before) that I must be —here I am not indirectly auoting but reading from implications— a nut job just making up symptoms and I should come off thinners immediately. Sigh. ( does this ever end? What would we do without this site. )

I will be in hospital for a night or two, then hubbie and I are staying in a hotel for 2weeks so “ in the event of a post op complication WE will deal with it. Right here. HERE, In Cleveland! WE will deal with it. Not in Chaaarles-ton. Right here. HERE!”

So we will be there. THERE. Right THERE, for most of June.

And good luck for you!

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Great - I guess i got my wires crossed again - the only crossings i should have is eye's - ears- arms -legs -toes and noses - There got them all BUT not wires . So you will be having a mini vacation sort of speaking . How far is Cleveland from your home ?? I have to go to Dartmouth Hitchcock in lebanon NH about an hour and 15 minutes if traffic is good and no construction Ha we seem to have a lot of road work all the time here . but this area of the country boasts the one of the oldest in the country !! QWELL best to you again my friend and enjoy your MINI !! Casey and I

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5-6 hour drive depnding on traffic. Im bringing a lot of books to read. Donald hates to travel. For him it may not be a vacation. And in 35 years of marriage he has never taken 2 weeks off work at one time. Gubpva Casey a pat for me.

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Best of best Jim. All shall go well and you’ll be back “twerking” in no time...lol. Stay well, Cindy

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twerking -- now that would be a site - a would scare more people away than i would attract -- the only thing i can draw close to me are fly's :-( That's for the support-- i need that to -gravity is a wonderful thing till it come to our ageing bodies . WELL NOT EVERYBODY LOL GGGGG almost got myself in deep poop there didn't I !!! Hows Jersey - do you live near the ocean side of state or mid state or western side and there is also north or south !!! not that i get down tere BUT if you and your Husband ever get up this way let me know , we could always get together for coffee or what ever it is you guys drink - there is always mini golf - we have a place that boasts the longest putting green in the country or maybe even the world - you know one of those important BIG facts of our state .!! BUT I think we are a larger state than you guys !!! Hay NH . thanks again Casey and I .

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I am fortunate to be between the ocean and the river. Over the bridge is Seaside. That would be fun. Let me know if you are ever coming this way too! It would be nice...

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I will - I don't travel to far never more than an hour from home - i have to let my PCP know where i am going and the nearest hosp. and the phone # for the hosp. ETC. BUT i am thinking about going to Denver Colorado to visit my God child he is getting married and i'm seriously trying to figure how i could raise the money to get there before i die here . Maybe go fund me Ha ha i always wanted to see the rockies and this could be my last chance . And i believe i would have to disclose to airline that i am an APS patient and haver to have insurance - i know thier has been a lot of talk on it but i will have to check into it more - i have till Sept 9 Th my anniversary date for the Dia. of my APS. I wonder what kelly does - maybe i will contact her and find out more . What do you know about it ?? I have to go right now need to pick up a script tonight to start Bridging for tues.Welli have already started actually bit i need more Enox syringes . BUT i will be back in about an hour .

Thanks my friend BBN C & J

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When I travel I make sure I have my meds on my personal carry on luggage, honestly I haven’t travelled with my lovenox yet, only in the past with my warfarin. I didn’t have to say anything about my APS, but I did have a copy of my prescription for the warfarin with me in case other questioned it. Which they didn’t. I didn’t do anything about insurance...maybe I should’ve. KellyInTexas maybe able to help answer this, Kelly?

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Yes, the less fuss made the better! But I absolutely make a plan! I quietly mention to ticket staff when checking mail luggage and getting boarding pass. This is the right time. Very quietly and understated. “ it’s no big deal, I’m perfectly fine, do you need the prescription? “ usually they don’t even need it. I’ve never had it flag going through security x- ray and I fly quite a bit. I keep RX in my wallet just in case. I can always say, “ I did mention this when I checked in.”

I have my doctor write a prescription saying I have a medical diagnosis of aps, a blood clotting disorder that required the administration of subcutaneous injections of heparin on time sensitive intervals.

Mainly I do this so they don’t separate me from my carry on if it gets too crowded- because if they put it in the underbelly of plane it will be too cold for the Heparin. Also- I need it!

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Typed a big reply and it won't let me send it !!

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There i guess my computer must of had hiccups !!

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Sending you best wishes from the UK, I hope Casey has his paws crossed for you? MaryF

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Casey my friend didn't want to leave me when i had to give maureen his Service dog leash when they took me in to change for the procedure M said he kept stopping and turning around as she tried to take him out to the car for the hours i was in there . she said he would walk a little ways and stop and try to go back to the door i went thru when he last saw me and he was so excited when i came out to the car . He isn't ever away from me for long 24/7 and attends all Dr's visits i have unless something like this - i could of pushed it and taken him in but he would want to be on the bed with me - he is good if he can see me BUT when he can't he wants to do his job and be with me . Quite a little guy i tel ya and smart as a whip . Love him -he ha saved me twice in the past !!

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Get and keep an official note from your doctor outlining youn need for leg room and the ability - within safety limits— to walk around the cabin. Wuith such a note I have been able to get leg room in the cheap seats section.

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Wishing you a speedy recovery!

Ros

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Thank You - work in progress i guess !! :-)

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WELL all everything so far going OK Right hip the bad one i had the core decompression done in 2012 went great the left however she had to go in this exact spot i myself can't touch it makes me jump and she apologized and said i HAVE to go in there . SO extra Lidocaine was used {far more than the right hip} all the way in with the large needle they had to use as it delivers Lidocain , the cocktail for the joint and air they blow into the joint to expand the joint . i felt pressure mostly { accept left hip till it was all the way in as i said she ingested Lido as she made her way in } all and all i would do it again when needed now when the needle broke thru the outer layer of the spacing joint , it is tough skin i will call it , it poke thru hard and you feel it break thru . Not really painful just felt odd to say the least . Got home and started enox again 120 ml syringes into stomach area. and tonight start 10 mls of anticoags this will go till thurs night 7.5 anticoag { jantoven } Friday morning enox and then test INR as i always take Jantoven at night and Enox in mornings hips a tad sore and i have been holding off on Pain meds as much as possible to not only assess pain levels but i can because i got my 30 or so backshots the Friday before Tues procedure so back was and is still pretty good . My left side of my neck was a mess so Friday he shot left side of neck well- Dc. said he could see the bulges in neck, He didn't need to feel or use ultra to find them !! i couldn't turn my head to the left at all. he dots al injection sites with body marking permanent pen and i get home i take pic's with my didg. camera and then take camera to next Doc appointments and it saves having to wait in office to get after visit summary It works great if any of you would need to do this . Pic's work fantastic and other doc's just love it !! See my PCP on Thurs day , was suppose to be for INR and APS and a physical but i am sure the hips will be addressed also , so see how my day today goes , going to do a little food shopping with my friend maureen so see what that brings . AND HOW'S OUR GINA COMING ALONG ?? If you see this Gina Let me know . Hope well for you , what you just went thru my friend is far more complicated than I .. Best to you on your MINI Vacation !!! :-)

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