Thursday, July 19, 2012

Today has been quite a day...

Last night around midnight I began coughin up a lot of blood. I do this from time to time, sometimes its next to nothing, other times its like something from a horror film. Well last night was somewhere in between, but since my lung function is down in the 20% range, we decided that it would be a good idea to head over to Winter Park Memorial Hospital where my CF specialist is and get on some IV meds and some pain meds. For those of you who have never coughed up blood, it is a terrible drowning feeling coupled with a terrible ripping pain in your chest everytime you cough...unpleasant doesn't even begin to describe it.

After close to NINE - yes you read that right - NINE HOURS in the ER I finally made it up to my room. Soon after the usual visits from my doctors to discuss the plan of action, my Aunt Patti shows up to check on me. After hanging out for about an hour, she gets up to leave. As she does my phone starts ringing. As I was saying goodbye, I decided that whoever it was could wait and I would call them right back. Once she left I checked my voicemail - a call from Mayo Clinic.

Assuming it had something to do with scheduling more appointments, I was in no hurry to listen to the voicemail. I decided to go a head and listen anyway just in case and was stunned by what I heard.

The voicemail was from my lung transplant coordinator, Kelly Norman. She was calling to inform me that they have recieved all my test results back from my recent liver evaluations. She went on to say that based on those results, they have determined that I am NOT A CANDIDATE FOR A LIVER TRANSPLANT!! Did you hear me?? NOT A CANDIDATE FOR LIVER TRANSPLANT!!! Finally, the first piece of good news in the last two weeks! :)

Kelly also mentioned that since I have completed the lung transplant eval and that I was determined to be a candidate for lung transplant, she will be completing the paperwork required today and that she will be giving me a call mid-morning tomorrow to let me know my allocation score and where I am on the list for my blood type.

Wow. I am in shock right now. The last few weeks have been so tiring and frustrating not knowing what is going on and when it will be happeneing. Now, all of the sudden I am less that 24 hours away from possibly being officially listed for new lungs. And who knows, I might be towards to top of the list! This could all happen in a matter of weeks! I means it could just as easily be two years, but the fact remains - I finally have a direction! Of course this means MORE waiting, but its a different kind of feeling with this waiting. This waiting feels like the kind of waiting that can save your life...not the kind of waiting you do to pass the time before you hear the next hideous procedure you hafta do before you can ever get any real answers.

I feel like such a weight has been lifted from my shoulders. Dont get me wrong. I was ready and willing to do whatever I needed to. But knowing that atleast ONE part of my body, even though it is scarred and not 100% on its game, is still doing what it needs to be well enough that I get to keep it! This also means a less invasive surgery, and much less impossing scar (not that im not used to THAT already)...but its just really nice to get some good news. Especially as I sit here alone in my hospital room hooked up to oxygen and IV meds, downing cup fulls of pills, and watchin bad tv reruns.

Thanks for all the thoughts, love, and prayers you all have sent up for me, my family, and for my little 'ol liver....we thank you! Keep it up - it works!! Thank you Lord!

Much much love...


  1. Thanks alot for writing this it is the only blog I have ever read and is well worth it I try to keep up with how u are doing through yours and your families fb.... I pray for you! You are a strong girl and u hope you will get a transplant very soon! I think alot of u and always have! I may not write every time something is posted about you but know that u are always in my thoughts and prayers. <3

  2. Grats miss Erinapolous, love you so much =)

  3. Thrilled about your great news Erin! I will keep you in my prayers for a fast recovery and for you to be on the top of the list to receive your new lungs. God bless you.

  4. You keep the faith, my girl, and all will fall in place!