Figured I’d put the answer on my profile

Apr 23, 2021 3:42 AM

CraftyCyborg

Views

60544

Likes

1607

Dislikes

94

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.

fainting

bloodclots

pulmonaryembolism

health

answers

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,>>

4 years ago | Likes 2 Dislikes 0

>> but it was one of the most painful things in my life. Morphine didn't work. For 3 days.

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 1 Dislikes 0

so sorry you had to experience that. No one should have to deal with that kind of pain.

4 years ago | Likes 1 Dislikes 1

All the best from Bosnia!!! Stay strong!

4 years ago | Likes 5 Dislikes 0

Thanks, my dude!

4 years ago | Likes 2 Dislikes 0

I genuinely misread "fainting" as "farting"

4 years ago | Likes 5 Dislikes 0

Looked for this comment, I did the same thing, and I was like "Really ? It can manifest like that ? Crazy."

4 years ago | Likes 1 Dislikes 0

4 years ago | Likes 4 Dislikes 0

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.

4 years ago | Likes 4 Dislikes 0

Definitely make sure every doctor you see that could prescribe meds knows about any 'Factors' you have!

4 years ago | Likes 3 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

Make like this post and don't die in usersub.

4 years ago | Likes 4 Dislikes 0

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!!?

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

Jesus F. Christ, OP. Keep your spirits up. No one ever heals when they're like Eeyore. Be like Tigger ❤️

4 years ago | Likes 97 Dislikes 4

Minus the bouncies. It sounds like that may cause more problems at this point!

4 years ago | Likes 5 Dislikes 0

It's the best I could do on short notice

4 years ago | Likes 3 Dislikes 0

Aww, no sad faces. I love Tigger.

4 years ago | Likes 2 Dislikes 0

It's the only one available on the gif button! Need a bouncing one, for sure.

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 32 Dislikes 0

go through infinitely worse. Im not on a vent, I’m home with my kitties- I’m lucky, I’ll recover. ?

4 years ago | Likes 27 Dislikes 0

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!!

4 years ago | Likes 7 Dislikes 0

See if you have Protein C deficiency as well.

4 years ago | Likes 2 Dislikes 0

Good to know! I’ll ask. :)

4 years ago | Likes 1 Dislikes 0

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

4 years ago | Likes 3 Dislikes 0

Well, shit! That sucks. I had a defibrillator/pacer for years (different issue) & now am 16 yrs post heart transplant. You’ve got this!

4 years ago | Likes 35 Dislikes 0

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.

4 years ago | Likes 10 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 1 Dislikes 0

Just to be clear: That part of a dead guys femur is not sitting on your desk as a trophy, right?

4 years ago | Likes 6 Dislikes 0

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?

4 years ago | Likes 6 Dislikes 0

That is super cool! How did you get the doctor to give a piece?

4 years ago | Likes 3 Dislikes 0

[deleted]

[deleted]

4 years ago (deleted Oct 21, 2024 11:41 PM) | Likes 0 Dislikes 0

Lucky, I just have random bone powder from a dead guy.

4 years ago | Likes 3 Dislikes 0

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.

4 years ago | Likes 3 Dislikes 0

Did you tell them that too much bone was the problem, so they probably shouldn't add more?

4 years ago | Likes 3 Dislikes 0

[deleted]

[deleted]

4 years ago (deleted Oct 21, 2024 11:41 PM) | Likes 0 Dislikes 0

Looks like the docs figured it out on time, good work, you’re on the right treatment

4 years ago | Likes 2 Dislikes 0

Continue to do the living!

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 2 Dislikes 0

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!

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 1 Dislikes 0

Did you ever have genetic testing done? Curious as you have a significant family history for clotting disorders.

4 years ago | Likes 2 Dislikes 0

Me: Looks in your medicine cabinet, sees Xarelto. Immediately throws down a gang sign and says “Waz up Xarelto?”

4 years ago | Likes 3 Dislikes 0

Knowing is half the battle.

4 years ago | Likes 3 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

Yea had that late last year. Scary as fuck. On blood thinners until November.

4 years ago | Likes 3 Dislikes 0

Sorry @OP. This sounds like a lot to go through. Hope you are better soon!

4 years ago | Likes 2 Dislikes 0

Coworker had pulmonary test done, the doctor said his lungs 'lit up like Christmas trees' he had so many clots.?

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

Just cause someone had it words, doesn't mean your situation doesn't suck, too. Good luck. Stay awesome. The future needs more cyborgs!

4 years ago | Likes 2 Dislikes 0

This outcome is a hell of a lot better than the other options

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 1 Dislikes 0

If you are getting vaccinated make sure it's not the Astra Zeneca or J&J. Get one of the mRNA ones.

4 years ago | Likes 2 Dislikes 0

I’m getting my second dose of Moderna today with full doctor approval. Can’t wait!

4 years ago | Likes 3 Dislikes 0

Congrats, I have a few more weeks to wait for my second dose.

4 years ago | Likes 1 Dislikes 0

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!

4 years ago | Likes 2 Dislikes 0

I always get it on my non-dominant arm as I do a lot of handwritten notes at work.

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 1 Dislikes 0

If you feel like you’re about to die, don’t.

4 years ago | Likes 541 Dislikes 0

If you see a light, don't walk towards it.

4 years ago | Likes 1 Dislikes 0

.... Well shit...

4 years ago | Likes 2 Dislikes 0

Solid advice, 5/7

4 years ago | Likes 2 Dislikes 0

Real solid advice mate. Bravo

4 years ago | Likes 2 Dislikes 0

Aim yourself at the coffin, then the trick is to deliberately _miss_ at the last moment.

4 years ago | Likes 1 Dislikes 0

i subscribe to the fry method: 'thanks to denial i'm immortal'

4 years ago | Likes 3 Dislikes 0

This.

4 years ago | Likes 3 Dislikes 0

this dude figured out the key to immortality!!

4 years ago | Likes 29 Dislikes 0

Throw yourself at death and miss!

4 years ago | Likes 5 Dislikes 0

Lol, most excellent advice, thanks! ?

4 years ago | Likes 169 Dislikes 0

Just wait till you get his bill for that advice...

4 years ago | Likes 6 Dislikes 0

That'll be $350,000, plus an additional $15,000 for notifying you about the bill, and another $30,000 for processing your payment.

4 years ago | Likes 2 Dislikes 0

Dying is bad, mkay

4 years ago | Likes 16 Dislikes 0

"Have you tried just not dying?"

4 years ago | Likes 8 Dislikes 0

3/4 inches is 1.9 cm.

4 years ago | Likes 25 Dislikes 1

Duh! My stupid brain was failing tonight. My guess felt wrong, though. Thank you so much for the accurate answer!

4 years ago | Likes 9 Dislikes 0

Still better than a bilateral pneumothorax.

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 1 Dislikes 0

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.

4 years ago | Likes 2 Dislikes 0

Oof, warfarin? That shit is nasty. I’m grateful the pharmD got Xarelto approved in 1 day.

4 years ago | Likes 1 Dislikes 0

Yeah I wish a doctor would approve that for me.

4 years ago | Likes 1 Dislikes 0

((Gentle, non-bruising hugs)) I think for once my chronic shit was on my side. Many options had interactions, so no hesitation on xeralto.

4 years ago | Likes 1 Dislikes 0

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.

4 years ago | Likes 9 Dislikes 0

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?

4 years ago | Likes 3 Dislikes 1

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

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 2 Dislikes 0

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

4 years ago | Likes 2 Dislikes 0

With Xarelto the bleeding is pretty manageable, I'd say I bleed more than average, but not a ton.

4 years ago | Likes 2 Dislikes 0

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.

4 years ago | Likes 1 Dislikes 0

With coumadin, heparin, lovonox it was always a chore, plus you had to deal with diet and alcohol consumption issues.

4 years ago | Likes 1 Dislikes 0

With Xarelto most of that isn't an issue. Also sign up for coupon/secondary insurance on Xarelto's carepath site.

4 years ago | Likes 1 Dislikes 0

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!

4 years ago | Likes 130 Dislikes 1

@OP will probably be on Eliquis.

4 years ago | Likes 1 Dislikes 0

Nope, I’m on Xarelto. It was the best one they could clear with the pharmD. Lots of meds=lots of interaction risk.

4 years ago | Likes 1 Dislikes 0

Ah. My wife is on X for protein C deficiency, Eliquis is used mostly for PE's as well.

4 years ago | Likes 1 Dislikes 0

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

4 years ago | Likes 3 Dislikes 0

been on xarelto for 4 years now and had no clots no bleed issues. happy to chat if you ever need to talk.

4 years ago | Likes 2 Dislikes 0

And so much more convenient than warfarin. No need for constantly being bled for INR.

4 years ago | Likes 16 Dislikes 0

4 times a week and I still have vein scarring from the clots.

4 years ago | Likes 3 Dislikes 0

I’d starve on warfarin- no spinach, no broccoli. Ugh! (Aunts MIL is on it after 5 strokes. Her levels always suck.)

4 years ago | Likes 4 Dislikes 0

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.

4 years ago | Likes 19 Dislikes 0

I bleed quicker than I used to from simple cuts. Tiny bandaids work wonders. Worst has been from hangnails so nothing major.

4 years ago | Likes 17 Dislikes 0

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.

4 years ago | Likes 11 Dislikes 0

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/

4 years ago | Likes 3 Dislikes 0

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/

4 years ago | Likes 3 Dislikes 0

they request you delay your daily till after your injection

4 years ago | Likes 3 Dislikes 0

Oh thank god. My biweekly nerve blocks keep me functional. I’d be miserable without them.

4 years ago | Likes 1 Dislikes 0