My bad feeling about Larry leaving for work came true.. And darned if I wasn't reading a book about just that- trusting in those little vibes you get.
After a high temperature (100.6) on Tuesday I was told to be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare. I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began: 6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste of grapes in their mouth. This tastes nothing like that ! trust me
Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day! Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks.. And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!
So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover I'm on the last bar and in the red ! great and 4 hours to drive home! I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all. I sat in a McDonalds parking lot in the rain on the phone- starving.
I got a picc line again... :( I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line. and it itches like a MADMAN !
So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay. I am too exhausted and tired to even consider what this will do to the part D "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.
Since Colistin is not an approved Medicare drug, I shudder to think of its cost. But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.
On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion, 4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel. Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me. I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature. They let me ! I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead! Never have I slept that much or that soundly!
I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted. I will be in continual healing mode this summer :) But I will be here for the summer (and beyond) THAT is the key.;
Time for an IV!!!
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