Off to the procedure: Well Since that... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Off to the procedure

jetjetjet profile image
14 Replies

Well Since that last time i posted , been having bad cramps ,Dc said if they happen again off to the OR i would go for emergency surgery . Well I made it and 3 hours sleep now { if i can } then the long trip to the hospital over an hour drive . check in at 5:45 A.M. amd surgery at 7:30 A.M. I am so wanting to know what was causing such bad pain in my abdomen that 3 Dc'S down here couldn't find - so this may turn into more than expected - have cell with me for those of you with that # or be back in 4 to 7 days { I guess ?? }

I am so wanting to know what was causing such pain that the other DC'S

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jetjetjet
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14 Replies
Lure2 profile image
Lure2

Will be thinking of you!!

It is good that they take care of you now. It will be ok you will see. Let us hear how it goes when you can.

Kerstin

MaryF profile image
MaryFAdministrator

Best wishes to you, let us know how it goes, I am glad you have gone to he hospital. MaryF

Yllek profile image
Yllek

Good luck xxx

Budleighgeorge profile image
Budleighgeorge

Hope all goes very well xx

Budleighgeorge profile image
Budleighgeorge

Best wishs

GinaD profile image
GinaD

Did you get my email from yesterday? it appears that either my fingers messed up when entering your cell or my iphone forgot a digit or 2. Couldnt have been me, now could it? My iPhone must have messed up. Anyway ... if you want yo hear my ( obviously) confused support, call me or message me with your #.

Gina

jetjetjet profile image
jetjetjet

Back from the procedure- went well- one big question is that one of the surgeons said they found a hole in my intestine {MY surgeon didn't seem to know anything about it, confusing to me as the two weeks before the procedure i was having real bad stomach pain for which i was seen by a couple of other Dc's down here and of course they couldn't find anything wrong and i can see why with out a colonoscopy. But if the surgeon that found it must of found it near the hernia site in that umbilical area, so i guess i wait for the procedure report to become available and see what it say's before i can go any further with that . But if i did have a hole there that would explain the stomach pain !!

Now continuing with the bridging still 80ml. Enox twice a day , started back on Warfarin Friday #5 till Monday when we test INR again I need to be > 2.0 to stop the Enox.

When i reach that > 2.0 i will continue raising the Warfarin dosage till i am in high range.

Now me ,I am still extremely sore the 4 repairs went well-some complications , but ok now. very limited movement BUT need to walk {a must ] because of my very high clotting problem so laying down to long isn't good for me .While i was in hospital I wore the air massage socks {that go from ankle to knee, don't remember what they are called ? } they are great but none at home so walking is it for me no matter the pain it involves when i start , it does get better as i walk so that's good anyways HA HA . no deep knee bends - soccer is out -along with tennis . next two weeks before i can resume any kind of a life that doesn't require walking on rice paper . So that is that for now . My pain meds have become very close to me and very dear.

Thank to all for the PM'S and Messages here :-)

PS : Casey did ok for not ever being away for me for any length of time :-) :-) :-) when he did come and see me he curled up at my feet and didn't want to leave. Love that little guy . and my good friend Maureen took great care of him for me - He just loves her .. Glad to be home .

Lure2 profile image
Lure2

So very glad you are back home!! Give Casey a hug and one for you too!

Kerstin

jetjetjet profile image
jetjetjet in reply to Lure2

Can you read my reply to APSNOTFAB , she was first on my list , just getting so i can sit in a chair and then stand .lots of replying to do and then try to get the surgeons report from my computer when is posted to find out about the mystery hole that was repaired, and where was it and WHAT was it and maybe a cause ??

Lure2 profile image
Lure2 in reply to jetjetjet

Of course I can! I have read everything there is to read like a sponge.

So they have repaired the hole and you have no more pain. That is good!

Kerstin

jetjetjet profile image
jetjetjet in reply to Lure2

Pain cramps have returned this morning while i was doing blood . i don't need this right now as they will blame the operation but it is a whole different pain but trying to get Shannon to go to my Dc with it may prove to be difficult at this point

jetjetjet profile image
jetjetjet

Recumbent bike i was approved for before surgery -surgeon said they found a hole somewhere { I was still to groggy to remember } BUT my sister talked to a ZDC. that WASN'T my surgeon , THis hospital IS a learning facility so i think My surgeon wasn't the one that actually did the procedure BUT a hole somewhere that they did repair may have something to do with those horrible abdominal pains i was having prior to the procedure like 2 weeks before . My friend my Morphine and my Oxy's wouldn't even begin to stop or ease that stabbing and broad abdominal pain that lasted 45 min's or so when i would have an attack !!NOw if i can find out what they stuffed" fat" into may have been the origin of the pain ,this will help my 3 DC's i saw for that explain just what happened. I haven't had one since so i guess that is a good sign ..Did my first INR this morning , I was 1.0 last day in Hospital. I need to be >2.0 to stop the two 80ml shots a day of the Enox .I have been on straight # 5'S {I missed my Friday dsoe was just to exhaustd and fell asleep !!! So total repairs were 3 umbilical hernia's and one very low Inguinial hernia and then the mystery hole ??.standing up from any position very sore now at this point I can remove bandages today if i want BUT i had a bleed on the umbilical incision{ that makes me nervous with the dried blood and all . { I chicken i guess. did you want to stop over and remove that bleed bandage } HA HA . That's it for now unless you have some input :-)

Lure2 profile image
Lure2

Is it another pain than the abdominal pain you had before the operation? I guess it is natural with pain after an operation like the one you did.

Can you talk to a Dr about the procedure report? Have you still the bandages? Is the INR over 2.0 today?

Stay well my friend!

Kerstin

jetjetjet profile image
jetjetjet

Well since i spoke last yesterday i went to the Emergency room at the pleading of my Supervising Nurse. Got there at 2:00 PM and got too see the DC Anik she listened to me and knew of my APS and resent surgery . I brought info on leaky Gut syndrome and other info found on Line Under APS and different Dia's found . she listened to me we did Blood ,Urine -X rays and at the end of it all a CT scan w/contrast . it was god that i decided to do Ct scan then {she asked if i wanted to come back as i was bad} No i wanted to keep going she had said they found SOMETHING not quite sure just what it was BUT it was down by incision Umbilical area not he inguinial site . My nurse came in to take out my port site for the Dye and at that time i had a attack{mild but i wasn't sure how bad it was going to be } and i asked him NOT to start it yet as i was going to have a attacke and would most likely get crunched up in fetal position with the pain. my intestine area of the connection to stomach was the one , my belly swelled and i asked him to feel and to get Anik,she is done wit you he replied but i insisted and she came in and checked it out and said wow i can feel it but the pictures show it lower BUT it is right there so i was set for an appointment for today at the clinic to get a biopsy done as she couldn't order it .so after 8 hours there i went home with at least one of the 5 Dc's that have been involved actually see and feel where it really is not what they are seeing in the pic's .

Fast forward to today met with Dc and i am no better off - no Biopsy cause he couldn't get the notes from Anik and couldn't find any prior pic's from resent past so he is referring me back to my Surgeon whom i have already spoke with and believes there is no connection and then set up a consult with Interventional Radiology-but will pass along he wouldn't recommend biopsy at this time. and goes on to say {I think this could be a Hematoma from the recent surgery }after i told him i was seen for this Oct 24 -- 17 days before i had the surgery and thay are getting worse .these pains take me right to my knees and have stitches from surgery or not , right to the floor if i am standing .So i wait and home stomach fluids aren't seeping out of the connection of stomach to intestine That's where the pain comes - i start to sweat and if i am having a bowel movement at the time {a lot of the time but far from always] when finished i get fire burning pain down thru the entire intestinal tract . grosse but i have to tell them this . all he would say most of the time when i tell him anything was { HMMM INTERESTING } i swore if he said that one more time i would have lost all niceness!!! I hope i don't have to go into next week with this . Well thanks for listening to the rant - if any one has something to add to helping i am here and would greatly appreciate it .

Thanks Casey and I

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