Remember I mentioned previously how refreshing a good nights sleep is? You wake up in the morning , stretch, and happily breathe in the start of a new day.
I've had one week without that dastardly cough waking me repeatedly during the night. The cough suppressants by the bed have been happily ignored! One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright, if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.
Well, the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places. My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking. Like an excited friend returning from the vacation of a lifetime, it has not stopped speaking since .
This does give me serious thought. Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!
7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe? Me neither. Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations, but will always return to our job.
Yawning, I lean back in my recliner and hope to get a 20 minute power nap - game on me vs cough.
Showing posts with label port. Show all posts
Showing posts with label port. Show all posts
Saturday, April 20, 2013
Saturday, June 9, 2012
Listen to those "bad vibes"
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!!!
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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