I say all that and then there I was at the hospital today.....ugh!! A little back story...I was hospitalized at the end of February for a week with low grade fevers and literally NO OTHER symptoms. The "fevers" had been going on for about 3 weeks in spite of doing oral antibiotics for a week at home. So I was admitted with the main goal of running some more tests and ultimately, getting my med port taken out because that's the only thing they could figure out might be causing my fevers. All my blood work and tests they ran looked great or came back fine so they (we) kind of just assumed it was my 13-yr old port that needed taken care of. So I had a picc line (basically a way to give IVs for a couple months without a port) placed to continue IVs and then my med port taken out and they ran all kinds of tests and cultures on it once they removed it. Nothing ever came back questionable, so we still don't know what caused my fevers. I did IV Levaquin and Primaxin (my IV I've been on for 2 years now) and my regular regimen of pills- and a week later, felt amazing, no more "fevers" and was sent on my way haha Thanks body.....
ANYWAYS, my new med port placement surgery WAS scheduled for Monday, March 16th...and in the mean time, I was going to my clinic once a week to get my picc line dressing changed/cleaned.
My surgery ultimately got cancelled because of some insurance issue and needed to be put on hold til April.
ENTER : CORONAVIRUS
So, as we started getting cases in Stark County...and things started to hit the fan...school closings, restaurants closing, social distancing encouraged...I was super anxious about having to go to clinic every week just to get my site cleaned. So I talked to my Infectious Disease doctor (the one who put me on this long term antibiotic regimen for something called NTM - NonTuberculosis Mycobacterium) and told him my fears/concerns about going to the hospital more than I absolutely HAVE TO right now. Not to mention, I had already been on these IVs for 2 years now & me & Jason are losing our minds trying to keep up with the regimen...and we came to the decision to take a "holiday" from the NTM antibiotics and get my picc line pulled out to eliminate weekly clinic visits altogether. He also advised me to put off port placement too until this Coronavirus is more controlled and on a down trend. No sense putting myself at a greater risk to catch the virus.
So my picc got pulled today & I am totally done with all antibiotics for now. That also means......I CAN START FULL DOSE TRIKAFTA NOW!!!!! I am OVER THE MOON excited to be free from IVs 4 times a day for awhile and to also finally be on a FULL DOSE!!! Like, I don't even know how to feel....its AMAZEBALLS!!!
I finally get to take the evening dose of Trikafta tonight (I've been taking the morning dose only 2 days a week, instead of the full morning & evening dose each day), so I will keep y'all posted! WOOHOOOO!!!!
Also, STAY AWAY FROM PEOPLE, PEOPLE!! I don't care if you think you'll be fine if you get it or don't think its that serious! It IS serious for alot of us and while YOU might be okay, wherever you might SPREAD it, will not be okay for the rest of us!!! Don't be stupid!!
Keep On Keeping On....and stay safe!!!
