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!!!

A Blessed Weekend

   Well we are in the last day of National Donor Sabbath Weekend. I am also celebrating 7 years with my second lung transplant today. It was 7 years ago on a Friday morning when  my call came in. I had just returned from a trip to Shands in Gainesville and discussed my Advanced Directive, knowing I had minimal time left to live. The phone rang in the middle of the night.  You always get an ominous feeling when the phone rings at night. Something has happened, or a loved one is sick. 
     Somehow I knew this was my call. I was the one sick, but with Gods' blessing and Shands hospital this might change. I remember waking my parents who were visiting at the time and everyone seemed to launch into hyper-drive. Everyone that is, except me. I didn't have the energy, stamina or strength to try. As I watched my parents rush around to get ready for the 2.5 hour drive I began to have doubts. I knew my physical strength was gone, it'd been the longest 2 years of my life, and I wasn't sure I would make the surgery. I also didn't want to waste a precious lung on someone who might not make it, when the lung could go to someone with a better chance than me. As Mom came in to give me a hug (somehow she knew I was having doubts), I asked her if she thought I could make it. This was probably the first time but most definitely the last time my parents would see my resolve falter. I remember she looked at me with all the love in her eyes and said " You can make it through anything, you're strong".  Of course she'd say this, after all she's a mother. But , she was referring to my mental strength, while I was worried about my physical strength.
    I'd been through this before, but this time my endurance was nowhere near what it was in 1991. Chronic rejection is much worse than Pulmonary Hypertension could ever be. Chronic rejection  is tough to endure. It was the biggest test of life I have ever had to endure, and pray to never endure again. Though I know I will endure it at some point. I hope to make it as far in the future as humanly possible.
     While I was questioning myself, I remembered it was the start of National Donor Sabbath Weekend. Surely, this is a sign that this transplant was meant to be. With all my doubts I had to at least give it my best shot at success. So off to Gainesville we band of merry men started.
     The holding area was a beehive of activity. I was introduced to my surgeon Dr. Staples. Yes, this is his real name. I made the off the wall comment, " and you use staples right?" This was my way of releiving some tension. I then met his wife, so I now had Staples & Staples MD... Sounds kinda cool huh?  It was during the wait process I discovered he was concerned with doing my transplant because I had lost down to 90lbs.! Wow, and my scale said I was at 100 lbs. it had been difficult to keep weight on at this point, since I was using all my calories to breathe. I had long ago consciously made the choice between eating or breathing. breathing was mandatory- eating optional. Thankfully the decision was to go ahead with the transplant.
    So today, as they say 7 years later- the rest is history.

Remember : Be a Miracle in someone's life, Become an organ or tissue donor.