October 22,1991

      It was on this day, 20 years ago I received a call that changed my life forever.

     The time was 11:00 PM. While not usually a night owl, I was awake. I was packing clothes for a much anticipated weekend trip to Orlando. Arrangements had already been made to have oxygen waiting at the hotel. I had been waiting for a lung transplant for 18 months.  Each passing day reminded me I was on borrowed time, after being given  12 months to live. I desperately needed time away from reality for awhile. Each day feeling myself get weaker and requiring more oxygen.

     I remember Mom calling me to the phone. It was my pre-transplant coordinator asking how I was feeling and if I wanted to make an out of town trip. My standard reply was, of course I'm leaving for Orlando. "Wouldn't you rather come to Pittsburgh?" " We have a pair of lungs for you." It was at this point I wanted to hope, drop to my knees and pray, but I knew to not get excited. I could get all the way there and it be a dry run. Meaning the lungs weren't viable after they got in to get them out of the donor.
     After hanging up the phone, I immediately called the Air Ambulance that was supposed to be on standby in Alabama only to find it was not in Alabama but in Texas. This simply would not do. After the pilots got in- the plane fueled and preflight done- the flight alone would be close to 2 -2 1/2 hours. This would put me over the time frame to receive a transplant. I only had a window of 4 hours to get the Pittsburgh, and be sitting for the go ahead from the retrieval team.  Thankfully UPMC had a plane sitting in Tampa that had just returned from taking a recipient back home. I called the original company to cancel and began to get suspicious, he did not need to know where my aircraft was coming from nor did he need the tail number of the plane.
        We arrived at the FBO ( private flight area) and began to wait. Suddenly 3 customs officials came walking in. I whispered they better not be after my damned plane!  They were! Seems they received an anonymous tip that this particular plane had not cleared customs after returning from the Virgin Islands. It had as it was sitting in Tampa. The trauma nurse and pilot both tried negotiating with customs to no avail. They were determined to break down ALL the machines I would need to keep me alive during the flight. The pilot offered to have one of them fly with us to Pittsburgh, tear everything apart upon landing and he would fly him home- we received a negative response to this suggestion too.
        I was slowly watching my chance at life slip through my fingers. I made a decision. I asked for a quarter. I went to the pay phone (yes there were still around) and called the local news station. I chose one that loves stories like this. I spoke with the news desk and mentioned it was a matter of life or death. When the gentleman asked who's I said mine! I told him customs would not release my air ambulance for me to receive a lung transplant and there was a slim chance I'd ever get a call again.  Within minutes, we heard over one of the customs officials radios "Who the hell called channel 4 !" They looked at us and I sweetly smiled, raising my hand and replied "Guilty"
     However it worked we were on our way! I must say that was the longest - most thought provoking flight of my life. Flying through the clouds and reflecting on my life. As we landed it was a rush to get me to the hospital. You see, I was supposed to be opened up and ready for new lungs at 5AM and we had just landed at 5AM.It was a mad dash in an ambulance!
 As we were awaiting for the official "go" I was sharing jokes with the anesthesiologist in the ER.

   Suddenly one of the physicians looked at me and asked " Are you ready?"  I replied " Is it a go ????" wide eyed and hopeful.. He smiled the most gorgeous smile ever - and said "It sure is"
And I was wheeled into the operating room on the biggest adventure of my life!

Prograf vs Cyclosporine both a necessary evil

     I was fondly remembering by experiences with both Prograf and Cyclosporine. In 1991 for my 1st transplant,lung transplant recipients were not given Prograf. Only kidney and liver reccipients and a few hearts.  My Cyclosporine was a liquid dose that had to be mixed with a liquid. NOT water, the taste was horrendous.
    Driving from Pittsburgh to Jacksonville, Fl provided a few laughs along the way. I wanted to see life again-not fly- so we drove.  I had a Hickman IV because I was in a study (yes the importance of reseach) regarding Gancyclovir vs Acyclovir. I would give myself an IV for 90 days. Stopping at  restaurant was the first of my revelations. I asked for a small glass (shot size) of either milk or juice. The look on the waitress's face was incredulous. Why would anyone want a small shot glass of milk or juice? When she brought it, the other patrons stared at me in horror as they watched me draw up a syringe of liquid from a bottle, put it in with the milk, stir it up and at the speed of light drink it. Looking at my parents I remember laughing and saying "What do they think I am, a drug addict? As if I'd do all this in public if I was." If they only knew how horrible Cyclosporine tasted...
      At the hotel we had to change the dressing on my IV site. Upon leaving in the morning I again laughed realizing the maid would probably think whoever left this room was probably suffering from a gun shot would. We did leave alot of bloody gauze bandages behind in the trash. Put that with all the unit dose empty packs of meds, and I just know she knew it was a drug bust gone bad. Since this I've often wondered how others viewd the life of a transplant recipient.
     Cyclosporine also had one rule. Do not take it straight. I found out why. I was at work and realized someone had taken my bottle of juice from the fridge for themselves. CARDINAL RULE : LEAVE ANOTHER PERSONS JUICE ALONE! You never know what they might need it for. My only option was to shoot it straight from th syringe. I counted to 10, held my breathe and pushed the plunger.
OMG!!! YUCK!!!  Now I know why we're told to take it with other fluids. To this day it boggles my mind trying to figure out why they cannot make these meds taste better. they've been around forever.
      I was told I couldn't have Prograf when I later asked because switching might cause cancer. Geez I was immunosuppressed anyway don't I still this chance? Yep, only mine has been pre-skin cancer. It was during chrinic rejection when I again asked this same question. After 30 days in Pittsburgh for thymo treatments I was told I was being put on Prograf. I asked, "but can't  this cause cancer?" This time i was told yes, but at this point you're dying anyway" Well, I guess they're right on that one. Chronic rejection is a royal pain. Been there, done that, don't wanna again.
    so now I'm on Prograf which helps  control chronic rejection better than the cyclo. Lung transplant wise. Kidney transplant would rather put me back on the Cyclo. Thank you Dr. Baz.
      Cyclosporine now comes in capsule form. One very large horse pill and one very small shetlad pony pill, 100mg and 25mg.
So if your dosage is 175mg you end up taking 4 pills. I remember I was told at one time that the pills smelled like horse sweat.
To which I sweetly replied, "How do  you know what horse sweat smells like?" At last they didn't taste like it.Not that I'd know. 
  Prograf is the same. 1mg or 5mg, so I now take 3 tiny capsules twice a day. Amazing,Cyclosporine was 175mg twice a day and Prograf is 3mg twice a day. Wow those tiny little capsules pack one heckuva punch.