Thursday, February 21, 2013

Officially listed at number 1

As of this moment I have been actively listed for my double lung transplant. Currently I am number 1 on the small list at Mayo clinic. This means at any moment we could be called to start heading to Jacksonville. My emotions are all over the place, can barely focus on one thing let alone the 100 things we need to get in place right now. I am full of fear, excitement, and sadness. The not knowing how this will end and knowing very well when I say good bye to all my family it could be the last time. It's been rough already but the ride in will be a long 3 hrs.

Time to pack.

Sunday, February 3, 2013

Still more tests

Well it's February and again I still have several tests and consults to complete before I will be considered for a lung transplant. This has been a very long and emotional process that was started back in December and was supposed to be completed in two weeks. I manage my disease very well and always stay ahead of the curve so having these delays, and major communication issues with the Mayo clinic really has me down and losing hope in the entire process. I was told last week that they will not even consider doing the surgery until my weight is 130 lbs, I have never weighed more then 105 my entire life. Since my lungs are only function at 22%, I am on oxygen full time and this poor lung function means my body is burning through thousands of calories per day just on breathing. Currently my intake is 6,000 plus calories per day, eating more is just not possible. I am looking into different facilities that will be more willing to roll the dice on the surgery, but my insurance will not cover it until mayo makes a final decision. That decision will not likely come until May.

Meanwhile I am trying to get on the water on a limited basis but as much as my mind and heart want to fish, my body physically won't allow it many days. I am doing all I can to make charters happen, but it is a day to day deal, so booking in advance is tough because I am not sure what will happen tomorrow let alone a month or two out. So for those that are calling, thank you! I won't leave people hanging, if I can do the charter I will, if not I will put you in the right direction to someone that can take you fishing. Thank you all for your continued support and patients with me!