kimduke.bsky.social
Long Covid MCAS POTS Vax injured Still wearing a mask!; Spoonie, Politics but it sucks now, cats. Thr*ads kimduke62, P*st & Spo*tible & the bird KimDuke, Slava Ukraini!, cynical AF, profanity, especially now. Dark humor to survive. RESIST
199 posts
307 followers
744 following
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I hate having an appt an hour away from home, it makes me feel like I need to take EVERYTHING with me! IE everything I'd need for a 3 day hospital stay far from home. Your unexpected hospital stays haunt me!
(At home I'm 5 minutes from the hospital)
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YIkes, close call. The city I get the injections is having horrible air quality due to fires - my N95 mask doesn't even come close to protecting my lungs when it's this bad. So grateful I saw a post about it, taking my elastomeric mask & hoping I don't have to use my portable nebulizer unmasked.
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WTF??? 🤦🤦🤦
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Not specific to me, but all of us. Can't help but wonder how much better we'd be doing if Drs treated us more aggressively rather than "wait and see while you suffer".
You'd have surgery next week!
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Doesn't want to add anything to what I already started. Increased inhaled steroids, nebulizer and oxygen and wait it out,let them know if I get worse. 🤷🏻♀️
But I'm getting pelvic injections tomorrow so will take extra Prednisone now, no nebulizer or O2 for 5 hours is not my idea of fun or safe.
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Oh wow! 😳. So for me I guess it's like the v*x, first one v mild reaction, second one worse.
Certainly won't be wanting it again. Though I should make sure they used the same contrast, and I guess call myself allergic to it. 🤦 Geez MCAS just keeps on giving!
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Also, I know you had a horrible reaction to contrast, did yours last awhile???
And here I was thinking I got away with something... ha!
(All those people not wearing masks risking getting this...if they only knew)
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What's that second emoji??? A black ribbon for being a dunce? lol
Left a message and sent an email to my asthma dr to see if there's a post contrast protocol, and sent them the ct reports. That should be fun reading.
I feel so much better mentally knowing this will pass!
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Yesterday:OMG I can't stand my chest feeling like this how can my asthma be bad w/so much pre-treatment Prednisone & Benadryl? Everything is wrong and it sucks.WHINE.
Today: Ummm "how long can contrast reactions in MCAS w/asthma last?"
Yep, Delayed reaction to contrast 🤦🤦🤦. Up to a week.
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Bless you for naming the med so I didn't have to click to see if it happens to be one of the 4 or 5 antihistamines I'm taking. Gold star for you...⭐
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I feel this. The amount of time I spend trying to make it make sense...and I always miss something.
Same time period too. Fellow long covid haver here too. Though I keep reading it has long covid hater, and I'm definitely that.
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That cat gif is the best compilation EVER! I'm still laughing/coughing/laughing!
Thank you. 🥰
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🤣🤣🤣 <cough> 🤣🤣🤣🤣
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Ha! Reply of the year. 💖
Even better, as soon as I read it I heard you say "candles, not fires, candles, not fires".
Not sure how much that applies, but I'm sticking with it. Even if it's way too many damn candles.
Still hiding from the world though.
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APATHY! That's it! Thank you, that's been hidden in my brain bugging the hell out of me but I hadn't identified it.
The inconsistency makes me NUTS. Lose my mind nuts.
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So glad that worked for you! I'm one of the weird folks whose blood pressure goes up 50 points on a keto diet. Since I already have high blood pressure, that's out. Also MCAS, so still very limited on foods. Potato chips & macadamia nuts are well tolerated, but high fat. :-( Time to experiment... 🙄
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Message to LC dr done. Reports sent.
Now I can give up and wait for a bit.
Sadly, looks like my addiction to crisps must be cut drastically, damn liver. ;-)
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A pulmonologist who doesn't know LC would be useless and gaslight me. So far LC dr isn't that concerned about breathing issues, so I guess I have to change that. Goddess help me with that one. Primary won't do shit.
Sorry for whining, I'm just so over this.
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I put the summary in chatgpt (can't add pics again yet), it recommended HRCT to better look for tree-in-bud, but if LC dr just says "microclots" I doubt there's any point.
I give up. or I would, if not for the whole need to breathe thing. 🤦 Who the f*ck is going to help me breathe better?
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My primary dr will blow ALL this off. Except maybe a thyroid ultrasound, since that was mentioned. (had a small nodule 30 years ago, it was nothing) Hopefully LC dr will make better sense of it, since every single thing has shown up in LC. Emphysema may be misdiagnosed as microclot damage.
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Impression by radiologist: Focal areas of ground glass density may relate to an underlying mild inflammatory process involving the right upper lobe. 🙄blah blah. I HATE this radiologist, he's the one that does the worst job. And yet again they did NOT look at the bloody VQ scan despite my notes.
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JFC. Radiologists are bloody useless. No mention of tree-in-bud at all. 🤦New crap: two areas of ground glass density. Mild lung scarring. Small pulmonary cyst. Slight pleural thickening. Slight emphysema. Mild fatty liver & cyst. Faint pancreatic calcifications. Thyroid nodules.
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I continue to be horrified by your experiences. sigh.
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Yes! For two and a half years I was sleeping on three pillows, last October I bought an adjustable bed and it's a huge improvement. I can raise my head so I can breathe, and I can raise my legs to increase circulation. And it massages/vibrates which also help circulation. And is relaxing 😌
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Thanks so much for understanding. 💖
I miss the bird place, I had a ton more LC followers and just more support in general.
Of course, the whole world wasn't exploding then either. 🙄
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Thanks. I've had asthma my whole life, the shortness of breath is new (3 years of it). But I don't like things feeling different... especially icky.
And I have to battle my brain sometimes when it's bad since my mom died from asthma. It's been 27 years, but my brain is an anxiety asshole!
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Ummm, I don't remember. It gave a few options, not all were awful. But I don't dare look at anything else tonight. I'll wait for the report. And until I get some sleep.
Nice to hear things can disappear!!!!!! That's what I intend to dream about tonight. 💖😘
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Thanks. I have partial answers, the report isn't done but the title is "ABNORMAL Chest CT" 🤦 Have to pay for chatgpt to upload more images, one of the 3 random ones I picked had a "mass". 🙄I'm now expecting multiple issues, so if it's only microclots I'll deal - b/c as you said a diagnosis is good!
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That first part is good, trying that. Already do second part.
Thanks for the advice. 💖😘
Just so pissed because anxiety had *just* calmed down after making it through contrast CT w/no problem.
Plus my chest doesn't feel "right", so it's not ignorable. plus asthma, hi HR, low O2. 🙄🙄🙄
Ah well.
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Your shit shows have been pretty miserable too. 🫂🫂🫂
Trying to rest....
I'll know more by next week, right? It can be handled by LC Dr then, right? Damn anxiety!!!!
(At least I didn't reply yet or it'd have been"fuck, help!!!" 😂)
# of people in my real world life who would understand=zero.
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I suspected they were microclots, but knowing is a whole different story.
Actually Harriet, I'm now positive the vq scan showed them, that they wouldn't review it is 🤬.
Ok, almost no sleep, tons of pre-treatment Prednisone, now anxiety spike. 🤦
Calls for my most frequent LC word - Fuuuccccck!
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Gotta admit, the dr's short message freaked me out. Lungs full of microclots certainly explain worse s.o.b. and O2 levels, and as a stroke survivor I really want meds/supplements increased to make them go away.
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Thanks! It went fine. @angryhacademic.bsky.social I submitted your "vq scan" wording one final time!
Couple days to wait, but, just heard back from LC Dr re the first CT- tree-in-bud is from LC - they're microclots. 😬
So, now it's just a matter of how many, how large, how widespread, etc.
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Well damn.
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Oh good job!!!
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That's insane! There has to be exceptions... "I need time to process" "I want to make the most of our time" "anxiety will make me crazy until then" "fuck your asinine policy" ....erm, maybe not the last one.
(I'd try to talk an office asst into sending)
🤬 On your behalf
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Any discussion of a nerve conduction study? I know them from pre-covid for hand and foot numbness... haven't seen them mentioned at all so maybe not useful?
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Thanks! I'd never have been able to intelligently sort through it without everything I've learned from you!
Everyone: Highest possy recommendation to get a consultation with @angryhacademic.bsky.social !
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P.S. Voicemail from dr's office: "She thought she had ordered a chest CT (meaning sometime in the last 3 years), but she just ordered it now." 🤦 Score 1 for self-advocating.
Schrodinger's box of test results: enter everything that's been done to see what's been missed, or not. 😬🙃
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TLDR: chatgpt let me educate myself, ask for what I wouldn't have known was needed, gave me the wording to do so, and then let me know exactly to expect from what I did get ordered. And gave me the next step if it doesn't have answers.
For *me*, it's a valuable new tool.
Harriet is still better!
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So, saved me another call to my dr, I have a comparison of what each shows, ready to send to any dr that says "xyz is fine"
@angryhacademic.bsky.social "w/contrast can correlate with perfusion defects seen on VQ scan" Might finally get confirmation!
SO glad pretreatment for contrast works for me!
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Me, back on chatgpt, and was able to add it to the previous chat with ALL the info!
"dr ordered w/contrast, which is better"
"no contrast"
"remember microclots and asthma"etc
"would you like a comparison chart?"
...
Final: "the ct w/contrast is most appropriate FIRST, but f/up w/HRCT if needed"
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Update: Tuesday I got an email: Dr. H wants to know when your last CT was. Reply: I've never had a chest CT. Them: Okay I'll let her know. (This was before above call.)
This am, text from radiology center: We have an order from your Dr. Chest CT w/contrast (not what was recommended)