6 months post transplant :)

Tuesday, August 24, 2010

END STAGES OF CF

                  Even though everything has happened already, I wanted to blog my lung transplant and my experience of what happened.  It only happened in March, so it's pretty fresh in my mind and I wanted to get it down before I forgot most of it! ha ha 
                 About a year before my double lung transplant I started to get progressively ill..and that happened really fast.  I went from going into the hospital about once a year for an annual "Tune up" of my lungs (which was just aggressively treating my lung infections with inhaled antibiotics, IV antibiotics, and chest percussion 4-6 times a day to going into the hospital for months at a time sometimes with very short breaks in between.  I remember the first time I left the hospital with oxygen attached to me.  My ultimate goal was to leave the hospital without it, because I'd never required it just to allow myself to get up and make myself a bowl of cereal.  I would run out of breath just doing that.
                We had to be educated on oxygen tanks, how they worked, and why I wasn't able to function without it.  That's pretty much all the info we received...but I had no idea that I was DYING. :(   Over the next couple months I was constantly in and out of the hospital all the time. I practically lived there.  But once I started getting worse I think I needed 5 liters of oxygen on me at all times and could not get up and go to the bathroom without someone helping me, and having to stop several times to catch my breath.  I also had extremely bad anxiety attacks from the fear of not being able to breath just at breath and constantly gasping for air. Its if someone is sitting on your chest.  You keep breathing as hard as you can but there nothing for you to grasp because there is no air there.  You start to physically panic because you're so short of breath you literally start breathing harder and harder because of the fear and you end up even more out of breath.  I had to learn how to calm myself down so I could savor the little breath that I had.  Xanax and other drugs like that were not an option for me because it compromised my breathing even more.  Just the fear of dying at any time, an;y day caused me to have a lot of vicious anxiety attacks and caused me to have to battle a lot of depression.
                   My last really bad infection sent me to the ICU.  My doctors contacted the docs a St. Josephs med center..they were the head of the Lung transplant center.  They said they needed to come see me immediately and they actually came up to the ICU that day from St Joes to meet me.  They introduced me to the fact that I was actually at the end-stages of CF and that I was at the point where I needed a lung transplant or I would probably die within the next 6 months..if not sooner.
                    Well, of course the evaluation began right away for new lungs-there was no room for me to get any sicker-and it took about a month and then they decided I was eligible for new lungs.  The hardest part was still to come, even after that bit of good news.
                     Waiting. Waiting. Waiting. Did I mention waiting??  It was absolutely agonizing!  By far, in my opinion, waiting was the hardest part of the transplant process.  I didn't know when I would get the call for when my new airbags would become available.  Would I even make it long enough to get that call? It was always hanging over my head -and it was extremely difficult to sort out my feelings at that time.  And I also felt a tremendous sense of guilt that kinda hit me like a slap in the face!  I started thinking...My life would be saved as a result of someone else dying.  Y them? Y did this have to happen??  It was all too devastating to wrap my brain around it all.  Why did I get a second chance and they didn't??  A lot of extreme emotions flowing thru me at that time and it's very hard to look at the things that life throws at you sometimes.  I actually went thru a little stage of denial- I actually convinced myself this wasn't happening.  I snapped outta that pretty fast tho, because you can't ignore it if you want to become strong enough physically and emotionally for a transplant.  It was not just going to go away.    






                     That's all for now:) Bye

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