count down from 100...

Part 2:

here we are now in the middle of February. i’m in the middle of quitting my job, i’m still getting Benadryl out of my system, and now i’ve just gotten my second vaccine. the day after my vaccine, i had a bad reaction to it. i had a 102.9 fever all day, and a terrible headache. the fever went away after 24 hours, but i was so tired the rest of the weekend. that was all to be expected. everyone told me about post-vaccine symptoms. however, since then, my cough had come back. i started getting fevers again and coughing more. so we tried another pointless round of oral antibiotics, which, again, fails. my cough had gotten so bad that i was not sleeping. it was so bad, that my voice got raspy and hoarse. so i went to see my CF doctor in person. he listened to my lungs, but i had to ask for an X-ray to be done of my lungs because they weren’t going to do one. apparently, my lungs “sounded” fine. but i certainly was not feeling “fine”. i know now to be my own agent, so i knew there was something else going on here and i wanted to get to the bottom of it!

i get the X-ray and it showed a distinct pocket of infection growing in my upper right lung. ta da! i knew it. again, no one believed me, but i knew how i felt. it’s like, sometimes i have to be the one who convinces doctors of what i want. he advised that i be admitted into the hospital this time for observation and IV therapy again. i didn’t complain, i knew that’s where this was heading again. clearly, the first round of IVs didn’t fix whatever was growing in my lungs, so now we have to take a more thorough approach. remember i had just gotten off IV antibiotics only a week or two prior.

going to the hospital in the time of covid is so fun! once in the hospital, things are pretty easy, they accessed my port, started the IVs, i did my normal treatments as per usual, and things can theoretically go smoothly. on the first night in the hospital, i went for a CT scan of my lungs and my sinuses, and my doctor also asked for an ultrasound of my liver, spleen, and kidneys. there were some liver complications, but nothing to worry about apparently. some levels were elevated, but nothing too concerning because nothing was done. also apparently i have gall stones and gall “sludge”, but so does everyone, it’s nothing new. no one wanted to operate on anything so we just continued with business as usual.

stays in the hospital are rather boring. i basically just sleep a lot. with covid rules, now you can only have two visitors per day, so my mom was with me most days which helps with the boredom. i usually can’t leave the hospital until they know what is growing in my sputum cultures, so they know what drugs are going to kill the bacteria growing in my lungs. does that make sense? i’m not a scientist. anyways, every day, new things kept showing up in my cultures, so they kept switching the antibiotics on me! i swear i was on 5 different drugs in the hospital.

remember that pocket of infection that showed up on my X-ray? well, it concerned my CF doctor once he saw the clearer image from the CT scan, so he wanted to do a bronchoscopy on me. basically, it’s a minimally invasive surgery where they take a scope down your lungs and lavage (spray down with water) the inside. he cleans out my lungs and is out of there within 15 minutes. of course, this scared me a little because i had not had a bronch since 2013, but if it’s what the doctor ordered, i guess it’s what i needed. so they took me to the OR under those big scary lights and put me under general anesthesia. gas mask on, I started counting. 100, 99, 98… i never make it past counting down to 95. anyone else? no complications during surgery. my mom was notified that it went well only 15 minutes after they took me away. everything was fine, and the doctor was actually surprised at how little mucus he did find inside.

at this point, i have been in the hospital for one week. hospital food is absolute garbage and i’m dying to go home. after i wake up from the anesthesia, my doc said i can leave! there was nothing concerning regarding the bronchoscopy, so i am free to go. i haven’t had a proper bath or silent night in so long. the old man in the next room over had dementia, and would scream all night long, so that was fun to listen to.

home at last… well, home at my parent’s house. remember we are still in the process of moving out of my apartment, so i have no real home to go home to right now. plus mom always helps me with my home IVs anyway, so it worked out for the better. however, i am rendered absolutely useless when it comes to packing up the next couple of weeks. i still have two more weeks on IV therapy in my future, so i rely on family and friends’ help in order to pack and move. anesthesia is still in my body, so i’m absolutely exhausted for a few days after i returned home. anesthesia can really mess up your body if you’re not careful.

the next few days go by, i’m sleeping away my life most of the time. when it’s time to change out my port needle again (this has to be done every 7 days for sanitary purposes), i have a home health nurse that comes over to do it for me, and who also draws my blood for basic lab work to maintain a steady antibiotic dosage. the antibiotic they put me on is a brand new drug in the pharmaceutical world, but thankfully i was handling it okay. i’m still coughing up quite a bit of mucus, so that was a bit confusing, but apparently whatever i was growing in my lungs was very rare and strong this time around. it was taking a while to combat the bacteria inside me. so my nurse comes, changed my needle, i get another needle shoved back into my chest, she draws labs, and takes all that to lab quest. everything was normal. (narrator: everything would not be normal).

okay, here we go. next morning, 9 am, i get a frantic phone call from a nurse at lab quest, saying i need to go to the ER right away. the results of yesterday’s lab work showed my hemoglobin to be 3.6. (For reference, normal adult hemoglobin should be above 11, anywhere from 11-17) , and this lady was saying mine was at a 3.6. now, i have since learned that a 3.6 hemoglobin means a person is practically nearing death. but i believed this stranger who called me early in the morning. meanwhile, mom is in the other room on the phone with my doctor who is saying the same exact thing! “take her to the ER now! her hemoglobin is too low. make sure she doesn’t fall over or get dizzy. she might need a blood transfusion.” so now, i’m royally freaking out. a blood transfusion?? i’m not losing blood from anywhere! how did this happen?

okay, so i’m rushed to the ER i guess. we needed to get the answers to this hemoglobin debacle. but i felt fine…. that’s the mystery. if my hemoglobin was REALLY a 3.6, i would be fainting, passing out, dizzy, unable to walk, and struggling to breathe, and i was experiencing none of those symptoms. but when two people call you early in the morning and tell you to rush to the ER, you go. mom and dad both take off work that day to come with me to the ER, especially because we all thought i’d need a freaking blood transfusion!!

so in the ER, none of the nurses believe i actually have a 3.6 hemoglobin. they all say i look too healthy for that to be the case. one nurse even said to me the last time she treated a patient with a 3.6 hemoglobin, they coded on the table (reassuring, right?). but i was nowhere near that. so no one seemed too rushed to draw my blood and check… we waited in the ER for HOURS before a nurse drew my blood. once she finally did and the results came back, i was assured, my hemoglobin was NOT a 3.6, in fact, it was fine! it was at a 10.9. yes, this is on the anemic side, but we’ve always known i’m anemic. this is normal for CF. the 3.6 number came from the red blood cell count, which coincides with my hemoglobin number.

long story short, my hemoglobin never dropped, i was never in any danger. someone somewhere messed up and mixed up their numbers and told me my hemoglobin was low. so i suffered through a day of hell in the ER thinking i needed a blood transfusion because someone made a mistake.

i need a vacation.

i’m mentally and emotionally exhausted at this point. i just want to hug my cat.

there’s no further reason to keep me in the ER so they released me.

i go back home, to still do more IVs for another week. remember i’m still dealing with a lung infection, and i’m still moving out in a week’s time too!

there’s a lot going on. and my anxiety takes a hit. i’m taking codeine every night just to be able to sleep. not only that, but obviously my social life and work-life has taken a hit too! yes, i just quit my job, and good thing too, because i’ve been decommissioned for the foreseeable future. it’s just hard. sorry for all the drama, but i don’t think normal people have to deal with all this. and that’s all i strive to be; normal.

there is a conclusion to this saga, i promise. but i’ve written so much already that it makes me tired just thinking about it, lol. i’ve decided to break this down into 3 parts now. to be continued and concluded in the next chronicle. i’m doing fine now, no need to worry, but i will wrap this baby up next time.

thank you everyone for reading so far.

-memento mori