
CraftyCyborg
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This will die in usersub, which is frankly what I intend. But since I had posted the confusion of why I kept fainting, I figured I’d also put the answer on my profile for convenience sake .
I had my #cyborgification 2.0 surgery about 3 weeks ago now (April 2nd). Right before my 10 day check up with the surgeon, I began passing out when I stood and especially if I tried to walk. At the checkup the surgeon discovered one of my new electrode leads had moved 3/4” (I dunno, 3-4cm? (Edit: I’m a moron. It’s 1.9cm.)). Not good. He sent me to the ER.
Initial blood work and EKG were weird so I got admitted. D dimer (blood test to look for clots) the next morning was sky high and a CT confirmed it- pulmonary embolisms.
They don’t give exact numbers but we were told more than one in each lung, meaning minimum of 4, and we were told they were large ones.
Now they think I have a clotting disorder, either Factor 5 or Factor 2. I have two maternal aunts with 5 and my dad has 2. Genetic screening plus clotting factor tests will be done in a few weeks, but I’m now on Xeralto and was told it will be for life. This does complicate shit with my existing health issues, but we’ll get it figured out. We always do. :)
I’m currently feeling good though I do get tired and winded easily. But in a few months, I’ll be back to normal, just a bit more careful around pointy objects, lol.
arcenlapin
Honestly, good thing you were fainting. Otherwise next symptom is the pain in your lungs and you can't breath. I haven't given birth yet,>>
arcenlapin
>> but it was one of the most painful things in my life. Morphine didn't work. For 3 days.
CraftyCyborg
I had pain my chest, shoulder blades, and arms. But I also have full body CRPS, so I’m used to crippling pain so I just ignored it. But I’m
CraftyCyborg
so sorry you had to experience that. No one should have to deal with that kind of pain.
NaughtiusMaximusIII
All the best from Bosnia!!! Stay strong!
CraftyCyborg
Thanks, my dude!
KAPTAINKAMIKAZEE
I genuinely misread "fainting" as "farting"
SmashLobDrop
Looked for this comment, I did the same thing, and I was like "Really ? It can manifest like that ? Crazy."
98Scythe98
Mirilali
My best friend, her sister and her mom all have factor 5. Thankfully it's only heterozygous for the kids, I think mom has both genes for it.
Mirilali
Definitely make sure every doctor you see that could prescribe meds knows about any 'Factors' you have!
CraftyCyborg
Oh for sure! I know from my aunts/dad/nurses that there’s a lot of really bad interactions/pairings. But I am bummed they took my NSAIDs.
VodkaReindeer
Make like this post and don't die in usersub.
johnbaz
I got a phone call from a nurse about the heart attacks I had- news to me, I've never had one but my cousin with the same surname had two!!?
UndrwearMustache
I'm on xarelto for the for see-able future. Been on it for 2.5 years now. Clotting is scary and traumatic. Hit me up if you need to talk.
AdultPersistentAngst
Jesus F. Christ, OP. Keep your spirits up. No one ever heals when they're like Eeyore. Be like Tigger ❤️
KiltedinSeattle
Minus the bouncies. It sounds like that may cause more problems at this point!
AdultPersistentAngst
It's the best I could do on short notice
CraftyCyborg
Aww, no sad faces. I love Tigger.
AdultPersistentAngst
It's the only one available on the gif button! Need a bouncing one, for sure.
CraftyCyborg
Oh, I’m stupidly cheerful, lol. To the extent my hospital nurses kept commenting on how my room was a break from the crazy. I’ve seen folks
CraftyCyborg
go through infinitely worse. Im not on a vent, I’m home with my kitties- I’m lucky, I’ll recover. ?
AdultPersistentAngst
I noted that in your description and love to see the positivity! I trust that you're in good hands and will thrive again fully!!
kmikl
See if you have Protein C deficiency as well.
CraftyCyborg
Good to know! I’ll ask. :)
Girapple
Small world. I have factor v and got taken out by PE's this January. You'll start to feel better after two weeks on a blood thinner
KiltedinSeattle
Well, shit! That sucks. I had a defibrillator/pacer for years (different issue) & now am 16 yrs post heart transplant. You’ve got this!
CraftyCyborg
Go you!!! That’s amazing! I hope your new heart treats you well! I’ve got part of a dead guys femur but hearts are waaay cooler.
KiltedinSeattle
As you well know, attitude makes a huge difference. My nurses appreciated mine as well, & I swear they spent a tad more time with me.
unkiereamus
My nurses didn't like me...except maybe my night nurse, I might have had a shot there...but more likely I was just high as fuck on morphine.
behind7proxies
Just to be clear: That part of a dead guys femur is not sitting on your desk as a trophy, right?
CraftyCyborg
Nope! In my femur- recurring bone cyst. So 3-4 dead guys at this point. But I do have a chunk of MY femur in a keychain. Isn’t epoxy cool?
periwinklepanda
That is super cool! How did you get the doctor to give a piece?
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unkiereamus
Lucky, I just have random bone powder from a dead guy.
CraftyCyborg
I’ve got both. My stupid bone cyst likes to return so the last time they mixed chunks into the paste. It didn’t work, lol.
unkiereamus
Did you tell them that too much bone was the problem, so they probably shouldn't add more?
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SternoTesticularLigament
Looks like the docs figured it out on time, good work, you’re on the right treatment
furnitureandeffects
Continue to do the living!
NapDragon
me, my mom, and my grandad all have factor 5 as well, i dunno about my uncle and aunt though. thankfully mine isn't bad enough for meds
NapDragon
also cheers and all good wishes! I've got over 20 surgeries myself and spinal rods to boot, i know how it can be! congrats on cyborg!
CraftyCyborg
Thanks! I got my second SCS a few weeks ago and my arms are so much better. I can’t wait to see how it does with full activity.
TheReptilianAgenda
Did you ever have genetic testing done? Curious as you have a significant family history for clotting disorders.
Chasmann
Me: Looks in your medicine cabinet, sees Xarelto. Immediately throws down a gang sign and says “Waz up Xarelto?”
izme1000
Knowing is half the battle.
tossacointoyourwitchers
Be careful on stairs too, I’m also on blood thinners for life for a unexplained PE and they doc said to go slow on stairs.
CraftyCyborg
I’m already terrified of stairs and can barely do them- I shattered my hip falling on steps at 17. So I don’t really do them now.
recliningpanda
Yea had that late last year. Scary as fuck. On blood thinners until November.
wildeme
Sorry @OP. This sounds like a lot to go through. Hope you are better soon!
busterfixxitt
Coworker had pulmonary test done, the doctor said his lungs 'lit up like Christmas trees' he had so many clots.?
CraftyCyborg
Fuuuuck. Yeah, I’m not quite that bad! Tbh, tho, if it wasn’t for Covid, I would have been in hospital 8-10 days from what they said.
busterfixxitt
Just cause someone had it words, doesn't mean your situation doesn't suck, too. Good luck. Stay awesome. The future needs more cyborgs!
psuedon
This outcome is a hell of a lot better than the other options
CraftyCyborg
True facts! I mean, there’s still a risk I could die. But so far I’m improving daily so I’m taking that as a great sign.
puerkz
If you are getting vaccinated make sure it's not the Astra Zeneca or J&J. Get one of the mRNA ones.
CraftyCyborg
I’m getting my second dose of Moderna today with full doctor approval. Can’t wait!
puerkz
Congrats, I have a few more weeks to wait for my second dose.
CraftyCyborg
Pro-tip: definitely don’t use your dominate arm. They say to get flu shots that way but this hurts way more than a flu shot!
puerkz
I always get it on my non-dominant arm as I do a lot of handwritten notes at work.
CraftyCyborg
I usually use my left, as I walk with crutches and my left gets more use. Using it post-vaccine is the best way to reduce soreness. But I
ChelVanin
If you feel like you’re about to die, don’t.
MrRobSteel
If you see a light, don't walk towards it.
jonhutch01
.... Well shit...
shambushi
Solid advice, 5/7
Sp00kyVaginosis
Real solid advice mate. Bravo
StrategicWeaponsPlatformNineAndThreeQuarters
Aim yourself at the coffin, then the trick is to deliberately _miss_ at the last moment.
borderlandsman
i subscribe to the fry method: 'thanks to denial i'm immortal'
xjmjguy
This.
dudedude09
ReginaKasteen
Throw yourself at death and miss!
CraftyCyborg
Lol, most excellent advice, thanks! ?
KronianSerpent
Just wait till you get his bill for that advice...
ReaperCDN
That'll be $350,000, plus an additional $15,000 for notifying you about the bill, and another $30,000 for processing your payment.
sassycephalopod
Dying is bad, mkay
stoutde
"Have you tried just not dying?"
JackalopeElope
3/4 inches is 1.9 cm.
CraftyCyborg
Duh! My stupid brain was failing tonight. My guess felt wrong, though. Thank you so much for the accurate answer!
SkynetAnnihilation
Still better than a bilateral pneumothorax.
CraftyCyborg
Indeed it is! My baby brother had CF, so I know just how bad things can be when it comes to lungs. I’m lucky.
FLCLINTRON
Oh glad that you got it sorted, similar thing happened to me years ago. I have factor 5 and i'm on warfarin. Got denied for that implant.
CraftyCyborg
Oof, warfarin? That shit is nasty. I’m grateful the pharmD got Xarelto approved in 1 day.
FLCLINTRON
Yeah I wish a doctor would approve that for me.
CraftyCyborg
((Gentle, non-bruising hugs)) I think for once my chronic shit was on my side. Many options had interactions, so no hesitation on xeralto.
Remisce
I've got Factor 5 and am on Xarelto for life..I've had PE's I feel it all, if you need to chat with someone let me know.
CraftyCyborg
Omg, ty! When you get a small cut, do you bleed a ton? Also, I get spinal injections a lot- any clue if those are impacted?
Howareyounow
I don't know if this information will help, but when I was 23 I had a stroke, at first they thought it was possibly meningitis, so they did
Howareyounow
A spinal tap, once they realized it was a stroke, they started me on blood thinners. Because of the blood thinners it took a week to heal. I
Howareyounow
Couldn't sit up for a week without instant pressure and pain in my head from the leaking of the spinal fluid. On another note, when I get
Howareyounow
Injections in my spine, they require me to stop taking any of my medications that cause blood thinning. And if it doesn't heal, they do a
Remisce
With Xarelto the bleeding is pretty manageable, I'd say I bleed more than average, but not a ton.
Remisce
I can't speak to spinal injections, but I have had to get other treatments and surgery and on Xarelto it has been much easier.
Remisce
With coumadin, heparin, lovonox it was always a chore, plus you had to deal with diet and alcohol consumption issues.
Remisce
With Xarelto most of that isn't an issue. Also sign up for coupon/secondary insurance on Xarelto's carepath site.
ElbowDeepInAJedi
I'm on Xarelto for the rest of my life. No side effects and no clots for me for a while now. Hit me up if you have questions!
kmikl
@OP will probably be on Eliquis.
CraftyCyborg
Nope, I’m on Xarelto. It was the best one they could clear with the pharmD. Lots of meds=lots of interaction risk.
kmikl
Ah. My wife is on X for protein C deficiency, Eliquis is used mostly for PE's as well.
AussieTimp
same im on xarelto for life after 15 PE's. I dont bleed easily and clot as normal. had teeth extracted and bleed stopped after 10-15mins
AussieTimp
been on xarelto for 4 years now and had no clots no bleed issues. happy to chat if you ever need to talk.
BondulanceDispatch
And so much more convenient than warfarin. No need for constantly being bled for INR.
ElbowDeepInAJedi
4 times a week and I still have vein scarring from the clots.
CraftyCyborg
I’d starve on warfarin- no spinach, no broccoli. Ugh! (Aunts MIL is on it after 5 strokes. Her levels always suck.)
CraftyCyborg
Do you bleed heavily from simple cuts? I’m a klutz so that’s my biggest fear. I’m also really worried about my routine spinal injections.
ElbowDeepInAJedi
I bleed quicker than I used to from simple cuts. Tiny bandaids work wonders. Worst has been from hangnails so nothing major.
VTiR
I was on warfarin for a decade - didn't bleed much. On Xeralto I bleed "normally". Docs have no idea why I clot but no side effects for me.
UndrwearMustache
I don't bleed any easier then I normally would. They are cautious to make sure blleding stops before sending me but I haven't had a 1/
UndrwearMustache
issue. You injections should be fine I get occipital never blocks. But they will let you know. the "shelf life" is 24 hrs so worse case 2/
UndrwearMustache
they request you delay your daily till after your injection
CraftyCyborg
Oh thank god. My biweekly nerve blocks keep me functional. I’d be miserable without them.