Poll of the Day > I'm going to have surgery in a few days.

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YoukaiSlayer
03/03/21 4:11:59 PM
#1:


On Monday I'm having my gallbladder removed. It's one of the most common surgeries out there and it's quite safe by surgical standards. I have rare chronic conditions that make me pretty terrified of it though, specifically the anesthesia. The biggest risk is anaphylaxis or stroke. I have MCAS which basically means my allergy cells freak out over everything. The only food I can eat for the past almost 2 years is brown rice and even then only one brand seems to be ok.

When I have reactions though, it's not normal allergic reactions. I end up losing control of my body and I start shaking. It also feels like I'm suffocating. Air gets into my lungs fine it seems and my blood oxygen is fine so I'm concerned the oxygen is not making it to my brain when that happens. It's most of the symptoms of brain swelling which is my concern. It also gets very hard to think or talk.

Theres a good chance it's dysautomia from my unstable cervical spine though which would mean my body thinks it's dying but it's actually fine. That's what I'm really hoping for I guess, although it'd also kinda suck.

Anyway I guess that all doesn't really matter outside of just not knowing how dangerous this surgery is. I'm pretty scared though. As soon as they set the date and time for it (Monday at 9:15) it feels like when you get on a roller coaster and it starts moving.

Getting my gallbladder out could fix my inability to handle foods and absorb nutrients well. As you might expect being able to only eat brown rice, I'm super malnourished. I'm at 117 lbs, 6 feet tall, male. Two years ago I was 215lbs. If this can fix the food part, nutrition improving may be enough to solve a lot of the other issues. Or it won't help at all. Regardless I have a massive gallstone so it's gotta come out.

I can't really get my hopes up too high but this hell might finally almost be over. My latest lab results look better than they had in over a year. I've been pretty much confined to my room and anything that triggers my nervous system to activate causes those reactions I mentioned including exorcise or even listening to music. I really hope this gives me my life back or at least doesn't kill me.

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ChimeraBlue
03/03/21 4:15:03 PM
#2:


Good luck bro!

You're going to feel so much better after recovery.

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Jen0125
03/03/21 4:18:36 PM
#3:


Good luck! I hope it helps you! I got mine out a few years ago and it was an easy surgery and recovery. I hope you have the same experience.

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YoukaiSlayer
03/03/21 5:41:02 PM
#4:


Yeah the recovery has me a little concerned too. I'm really hoping i won't need pain meds since I react to those (well I react to literally every med I've tried) or if I do I only need Tylenol. From looking it up it seems people's recovery varies greatly. Some people need no pain meds and say they feel like they could have gone back to work right from the hospital and some say they have horrible pain for up to a week or two. I did see something on a medical site saying that most people had stopped taking pain meds by the 5th day.

I'm also not sure how soon I wanna try other foods after the surgery. You can normally eat whatever right afterwards but I don't want to have a reaction to something and start shaking and risk having the incision open up from that. On the other hand, it's gonna be real hard to resist if I'm feeling relatively ok. I've eaten nothing but brown rice with salt for like the last 4000 or so meals with a few bits and pieces of chicken and vegetables thrown in occasionally to make sure I still can't handle them.

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SilentSeph
03/03/21 5:53:26 PM
#5:


I always feel so bummed out reading posts about your condition. Best of luck and I really hope things can get better for you soon!

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Clench281
03/03/21 6:36:07 PM
#6:


That sucks. You taking anything for MCAS? Montelukast/Famotidine/Loratidine?

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Mead
03/03/21 6:40:39 PM
#7:


Good luck I hope youre able to eat more foods after you heal up

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Jen0125
03/03/21 7:03:18 PM
#8:


My recovery felt like very sore abdominal muscles but not real pain except in the beginning with going from laying to sitting or sitting to standing. But that didn't last long.

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YoukaiSlayer
03/03/21 7:11:06 PM
#9:


Clench281 posted...
That sucks. You taking anything for MCAS? Montelukast/Famotidine/Loratidine?
I've tried a few things but I still need to try more. I was actually hoping to find a good MCAS controlling meds before the surgery but the gallstone is too much of a problem to wait any longer.

So far I've tried rinitidine which made me feel a little bad but didn't seem to improve anything. I've tried claritan which made me very nauseous. I still tried it for a few weeks but then I had a probably unrelated untyped hepatitis and salmonella that I almost died from and ever since anything that makes me feel nauseous makes me feel WAY more nauseous. I'm actually hoping that has to do with my gallbladder and that it will improve after surgery. I had been feeling relatively better during that time but certainly not cured and I'm not sure that had anything to do with it.

Then more recently I've tried famotidine (pepcid) which gave me really bad chest pain and I felt really weird. Tried it twice and then decided it felt too dangerous to keep using. I tried quercetin for a month. That is a mast cell stabilzer. It's a supplement but theres been some research on it showing it can work very well but possibly only for 45 minutes at a time. There really needs to be more research but regardless I tried it for a few weeks and felt a bit bad on it and didn't see any positive change. Then I tried fenofexodine (allegra) for about a week. I got really bad chest pain the last time and stopped until that went away but now I need the surgery so I'm not gonna start on anything until afterwards. It was making me feel pretty bad in general but I don't think the chest pain was related this time.

It's very frustrating to test things because you need to be on most things for like a whole month before you see any benefit and then often times you also need to be on like 4x the normal dose and I'm struggling to work up to even the normal over the counter doses.

It's also entirely possible that MCAS is not doing that much to me and that the real issue is the spinal instability or nuetrient deficiency or some combination. I've also noticed some things that lead me to believe my ribs might be a little bit malformed on my left side, they are clearly not entirely semetrical with the right side and I have symptoms of thoracic outlet syndrome sometimes.

Although really what symptom have I not had at one point or another?

Both MCAS and CCI (my spinal instability) are very rare but a lot of people have both and many of them also have connective tissue problems, most notably EDS which I supposedly do not have. My mother has a connective tissue problem but does not have EDS either so it wouldn't be surprising if thats it. The research hasn't really been done to figure out which is the root issue of the 3 for these patients. It's possible stuff released by mast cells damage the connective tissue which weakens the spinal connection or it's possible a weakened spinal connection sends incomplete signals to the mast cells causing them to be overeactive or that some 4th condition is the real root.

Since all medical research is done on a random scientist's whim though, the research just isn't there which makes dealing with these problems a nightmare as a patient because the medical industry just is not designed to deal with multisystem issues like this.
Mead posted...
Good luck I hope youre able to eat more foods after you heal up
Thanks. I'll be sure to mention how it goes, assuming I can anyway.

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wwinterj25
03/03/21 7:19:50 PM
#10:


Certainly not the same but some things might be able to be taken away from my experience of having a stomach ulcer removed. For years I had stomach pains and didn't have any idea why. The doctors didn't too. It wasn't until my sister was diagnosed with stomach cancer at 26 she suggested it could be a stomach ulcer as it runs in the family. I had tests done and it turned out to be the case. Cutting a long story short it got to the point where I couldn't eat without throwing up acid. I was booked into surgery to have the ulcer removed as medication didn't work. A few days before surgery it burst and I ended up throwing up so much blood. Needless to say I was very weak and skinny(more so than normal) due to ulcer. I had it removed and now have a scar down my stomach but despite having a bit of my stomach cut out I've manged to gain weight over the years (rare for me) and feel much better now. I'm still slim but I'll take it. Hopefully it works out for you too. Good luck!

Edit: As for recovery I caught a bug so ended up in hospital for three weeks rather than the one and had the shits. That wasn't fun. Thankfully I healed well though and no staples or anything came out.

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Jen0125
03/03/21 7:21:21 PM
#11:


I thought an ulcer is a hole that gets repaired?

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YoukaiSlayer
03/03/21 7:37:40 PM
#12:


I didn't know people I've blocked can see my topics but I clearly missed something.

An ulcer is a hole that gets repaired generally. Usually the body can do it on it's own provided the cause of the ulcer is dealt with. I've had a throat ulcer before and some bleeding gastritis that would have probably become an ulcer. In the latter case I just needed to take omeprazole for a few weeks. I'm on it again in case I have more problems which is lame. It was SO hard to get off of last time.

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wwinterj25
03/03/21 7:39:18 PM
#13:


Jen0125 posted...
I thought an ulcer is a hole that gets repaired?
A stomach ulcer can swell and eventually burst. Although I believe it's more the stomach lining being broken than the actual ulcer bursting but eh it amounts to a river of blood.

YoukaiSlayer posted...
I didn't know people I've blocked can see my topics but I clearly missed something.

You probably have me on ignore. Use block next time.

Edit: Being as he has me on ignore he won't be able to see this pro tip:
https://i.imgur.com/A7ox3r6.gif

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YoukaiSlayer
03/04/21 4:22:45 PM
#14:


Went to my pre-surgery appointment with the anesthesiologist which was a huge pain in the ass. The surgeon made it sound like it'd be real quick, just meet the anesthesiologist and they will tell me what'll happen and answer any questions.

No, it was 99% me giving my extended medical history and doctor contact info to a nurse for literally 3 hours. If they'd told me I'd be doing that, I could have brought my files where I have all that written down but instead I had to remember like 20 doctors from memory and search up their contact information on my phone.

Apparently just taking it from my patient portal would violate HIPAA even though I can literally okay it and it's all my information. Hipaa causes so many issues relating to convenience. Just let me put all my info on one place online, then let doctors request access to it with an app and let me ok that request from my side of the app. Why is that not how it works? Probably wasted 50+ hours of my life refilling out and reexplaining my medical information and frankly, it's too much for me to remember so they probably get spotty information.

Also regret not asking a few more questions during the surgical consult, specifically about a weird swelling then shrinking painless hard lump in my stomach. I mentioned it and the surgeon didn't know what it was and thought maybe it was my gallbladder but didn't order any scans or anything to find out. Feels like a partial intestinal obstruction to me. Maybe it's the case that during the procedure they will be able to see what it is and deal with it and that no matter what it is, I'd get the surgery anyway, but if thats the case, it was never communicated to me. Called to basically ask again but more firmly if it's going to be ok but the surgeon isn't in today so maybe they will call back tomorrow.

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Jen0125
03/04/21 4:24:00 PM
#15:


wwinterj25 posted...
A stomach ulcer can swell and eventually burst. Although I believe it's more the stomach lining being broken than the actual ulcer bursting but eh it amounts to a river of blood.

You probably have me on ignore. Use block next time.

Edit: Being as he has me on ignore he won't be able to see this pro tip:
https://i.imgur.com/A7ox3r6.gif

Damn, well I'm glad you got some relief

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Smarkil
03/04/21 5:50:42 PM
#16:


Jen0125 posted...
My recovery felt like very sore abdominal muscles but not real pain except in the beginning with going from laying to sitting or sitting to standing. But that didn't last long.

has it changed your eating habits? my niece had hers out and she constantly complains about spicy and fatty foods

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YoukaiSlayer
03/04/21 5:58:03 PM
#17:


From what I've looked up, it doesn't change habits for a lot of people but does for some others. Probably depends on the rest of your microbiome. I've also heard taking bile salt pills with meals can help massively when eating spicy or fatty foods.

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Mead
03/04/21 6:07:26 PM
#18:


YoukaiSlayer posted...
bile salt pills

ew

I mean, if they help people then thats great, but. . .ew

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YoukaiSlayer
03/04/21 6:10:07 PM
#19:


Mead posted...
I mean, if they help people then thats great, but. . .ew
I actually took a few about a year ago. I had my normal reactions that I have to most things so I couldn't continue them but the pills weren't gross to take at all from what I remember.

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Mead
03/04/21 6:10:41 PM
#20:


well thats good, that they werent gross I mean

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YoukaiSlayer
03/04/21 6:12:46 PM
#21:


Also they got some pretty gross pills out there. Something I was considering was a fecal transplant and they actually make that in pill form. It's exactly what it sounds like.

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Mead
03/04/21 7:42:22 PM
#22:


YoukaiSlayer posted...
Also they got some pretty gross pills out there. Something I was considering was a fecal transplant and they actually make that in pill form. It's exactly what it sounds like.

yeah that sounds pretty gross

ive heard nothing but good things though about the cases where theyve needed to do a fecal transplant though

heck in another decade it might be the trendy thing to go and get some extra healthy poop put in you every few months

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YoukaiSlayer
03/04/21 7:49:11 PM
#23:


Yeah I saw some pretty great results from it but there isn't all that much research on it yet. Another in the long line of promising medical advances without enough research. Definitely an option I need to reconsider if this surgery goes well but doesn't help my digestion.

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KogaSteelfang
03/04/21 8:24:36 PM
#24:


Wishing you the best. Hopefully this helps with the dietary needs. That sounds awful.

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AWinterJ
03/05/21 1:45:13 AM
#25:


By the sound of it this guy who is a paedophile apologist wants death. Maybe it's best he get's what he wants.

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Revelation34
03/05/21 5:08:33 AM
#26:


AWinterJ posted...
By the sound of it this guy who is a paedophile apologist wants death. Maybe it's best he get's what he wants.


Wat.
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AWinterJ
03/07/21 5:08:26 AM
#27:


Revelation34 posted...
Wat.
It's simple enough to read. If you don't understand it that's not my problem.

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BUMPED2002
03/07/21 10:29:35 AM
#28:


Good luck and God speed! Get well soon!

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YoukaiSlayer
03/07/21 10:54:06 AM
#29:


Imagine being that hateful because I don't want people to be put to death for the thoughtcrime of being attracted to children. Oh well, back on ignore he goes I guess.

The surgery is less than 24 hours away now. It's really starting to sink in that I might not be here this time tomorrow. Part of me wants to try and enjoy the day like it's my last, but I've already committed to trying to maximize my chances of getting through this so it'll probably end up being a pretty boring day. At least it looks really nice outside. Could stand to be a bit warmer though.

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Mead
03/07/21 11:11:46 AM
#30:


Winter is just desperate for any attention because he cant find any intimacy in his life.

Youre gonna be fine it is a very routine surgery from what I understand

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YoukaiSlayer
03/07/21 11:28:39 AM
#31:


Mead posted...
Youre gonna be fine it is a very routine surgery from what I understand
Yeah the cutting part isn't really too worrying and for most people it's one of the safest surgeries, it's my MCAS causing a reaction to the anesthesia that is the worry.

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Revelation34
03/07/21 7:53:24 PM
#32:


AWinterJ posted...

It's simple enough to read. If you don't understand it that's not my problem.


Well lies are usually simple.
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KogaSteelfang
03/07/21 8:01:35 PM
#33:


You're going to be ok. You'll be updating us in no time.

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YoukaiSlayer
03/07/21 8:46:12 PM
#34:


Hope so. I'm about to eat my last meal before surgery (assuming I can sleep), wipe myself down with antiseptic wipes they provided, then I guess attempt to sleep. I'm a little grateful my surgery got moved back another 30 minutes so it's now at 10:15 although I gotta be there by 8:15. I've got a million tiny worries but I think overall I'm handling it pretty well. Trying to sleep and stay asleep will probably be the big test. I wake up at least once every night and sometimes it takes me quite a while to fall back asleep.

Decent chance I won't be able to update here till tuesday if they keep me overnight for observation like they are considering.

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YoukaiSlayer
03/08/21 7:45:12 AM
#35:


I slept surprisingly well. I'm pretty anxious now but managing. Just about to leave to go to the hospital. Hopefully I can update later today or tomorrow. Currently at my lowest weight of 116.0 lbs. Would be cool if I don't drop much under 115.

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Mead
03/08/21 11:34:19 AM
#36:


Best of luck, look forward to hearing from you after its done

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wwinterj25
03/08/21 11:41:01 AM
#37:


Sounds like things are going well. Keep us updated.

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YoukaiSlayer
03/09/21 11:59:35 AM
#38:


Just got back from the hospital. Too tired to type much. Had a bit of an ordeal befoe hand but it went well in the end. They kept me overnight to see how I deal with the pain meds.

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Revelation34
03/09/21 1:53:41 PM
#39:


YoukaiSlayer posted...
Just got back from the hospital. Too tired to type much. Had a bit of an ordeal befoe hand but it went well in the end. They kept me overnight to see how I deal with the pain meds.


Just sleep for the rest of the day if you can. Don't think you should try watching anything right now since you've had issues in the past.
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KogaSteelfang
03/09/21 3:07:20 PM
#40:


YoukaiSlayer posted...
Just got back from the hospital. Too tired to type much. Had a bit of an ordeal befoe hand but it went well in the end. They kept me overnight to see how I deal with the pain meds.
Thank you for keeping us updated, but don't strain yourself. Get some rest.

Also, I'm glad to hear things went well.

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YoukaiSlayer
03/09/21 7:30:40 PM
#41:


Alright. I had a nice nap and feel much more awake although it might be that I'm not taking the benadryl/pain meds. My pain seems mostly fine if I'm not moving around or taking really deep breaths.

They said the incisions looked good before I left and I've been passing gas which is good. I haven't noticed the swelling lump thing so hopefully that was indeed my gallbladder.

They said my gallbladder had 2 large stones in and there a lot of adhesions on the outside of it against the fat area nearby indicating it had been badly enflamed many times. They forgot to do my liver biopsy which is annoying but apparently visually it looked "beautiful" but that doesn't exactly tell me if my copper is high. They also decided not to the scan of the bile duct because they were worried about me having a reaction which is a bummer because I suspect mine needs to be cleaned out. I had gallbladder related problems before I ever had a stone so it's like I had either microstones or sludge. Oh well, guess I'll have to look into that some other time.

Beforehand they almost canceled the surgery because of my AAI (a type of neck instability). Had to grab one of the neurosurgeons to look at my scan and ok me to be intubated. My instability isn't forward to back though, it's side to side or with twisting so there was no problems for this. But yeah, I was already panicking waiting to be taken to the OR and then they come in saying they can't do it cause of my condition which I've brought up like a dozen times in other appointments but suddenly now its an issue. Frustrating.

I'm always sort of amazed whenever they put you under how fast they do it. They go from asking if you are comfy to being like "and this will put you to sleep in 3 seconds" as they put it in your IV and I'm like "WHAT? give time to mentally pre-...." cause that could be the last 3 seconds of your life.

Didn't seem to have any major problems with waking up too soon at least that I remember. I came to pretty slowly in the recovery area and then they quickly brought me to my room on the 8th floor. Nicest hopsital room I've been in. Quite spacious, big tv, decent sized bathroom, relatively quiet compared to the other rooms I've been in.

I do wonder if something might have gone wrong in the operation though because it took more than twice as long as I expected. Should have been from about 11:15 to 12 but it actually took till almost 1.

Afterwards they just put me on toridol and tylenol with benadryl to hopefully temper my reactions to them. It seems like it might have worked which is a great discovery if so. However I'm not sure the pain meds did much but it's fine, I have a pretty high pain tolerance.

In addition to my normal rice they had me try some other foods and it sort of went well but not that well. At first I had a breadroll with some garlic butter on it. I didn't have my normal reactions but later I felt really nauseous and shaky. I burped a few times and it was very garlic flavored. Next I had a bit of plain turkey sandwich. This didn't trigger much issue at first but I felt a little off with my normal issues after about 45 minutes so I didn't eat anymore. Then this morning I had some egg. Basically the same as the breadroll but not as bad (although I also didn't eat as much).

For now I'm gonna wait a few days till the pain goes mostly away and I have my energy back and am not on any meds before I try new foods again. I feel like the pain from the incisions is pretty mild at this point other than the one they actually removed the gallbladder through so it's mostly gas pain which burping and farting out fairly often. With any luck by tomorrow or the next day I'll pretty ok. Planning to just nap and most of the day away.

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Mead
03/09/21 7:42:51 PM
#42:


Glad things are going ok

YoukaiSlayer posted...
and I've been passing gas which is good.

Lol

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adjl
03/09/21 7:49:09 PM
#43:


I'm glad things seem to be working out well. Not particularly surprised, but glad nonetheless.

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KogaSteelfang
03/09/21 9:20:33 PM
#44:


Yeah, very glad you're ok. Plus, hopefully it did help the dietary stuff. Might be too early to tell on that, but at least you were able to eat something.

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YoukaiSlayer
03/11/21 7:47:33 PM
#45:


Recovery has not been fun. Got lots of diarrhea and nausea. The gas pains are either non existent or terrible. Every time I get up I feel like all my organs flip upside down.

Also having a lot of my heat symptoms and it's just so miserable. It feels so hot that it's sorta cold. Presumably my body is having trouble with the extra bile acid or something. I don't know. I'm too hot to think.

My incisions seem fine as far as I can tell and they don't really hurt on the surface.

I feel like all my symptoms from before the surgery are the same and I just also have the recovery to deal with. It's too early to be sure of anything but I'm feeling a bit depressed.

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KogaSteelfang
03/12/21 4:29:57 PM
#46:


YoukaiSlayer posted...
Every time I get up I feel like all my organs flip upside down.
Oh Lord, mine do that sometimes. It is not pleasant. Sorry that it doesn't have seemed to have helped. Maybe once you fully recover you'll feel the difference.

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YoukaiSlayer
03/12/21 4:36:15 PM
#47:


Yeah as much as I'm feeling down about it, it really is too soon to be completely sure. Today the pain and movement is definitely better. The heat stuff didn't last too long yesterday.

Got a small bump with a white tip that kinda looks like a pimple or something right by one of my incisions today. I think it's a suture granuloma and thus no cause for concern but I guess I'll keep a close eye on it.

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YoukaiSlayer
03/13/21 1:45:04 PM
#48:


Sigh. The weird swelling that prompted me to get surgery has returned. Even though I mentioned it to 3 doctors including the surgeon, they all thought I didn't need a scan and just get the gallbladder surgery, "it really needs to come out".

Whelp, it's still fucking there so it clearly was not the gallbladder. Seems like something that would have really benefited from me getting a god damn scan before the surgery like I mentioned. Considering they also forgot to get a liver biopsy and also didn't give me a bile duct scan during the surgery like they said they would because they were worried about me having a reaction, I'm pretty pissed.

If I end up needing another surgery right after this in the exact same area, I'm gonna be beyond upset.

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Mead
03/13/21 2:01:59 PM
#49:


Its so frustrating when doctors and other healthcare people dont listen to what youre saying. You know your body better than anyone else.

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Revelation34
03/13/21 2:44:31 PM
#50:


The only doctors that care about patients are ones rich people like Bill Gates or Elon Musk can afford.
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