Week 2 of waiting

Another week has past and no phone call yet. The anxiety is running high in my mind. Sleepless nights and long days laying around trying to gain weight and not doing anything too physical that would burn major calories. Each passing day, I have become more and more in favor of the whole idea of getting new lungs. my fear of waking up intubated plus massive pain is still there but again I am ready for it. I am ready to start a whole new chapter in my life, and once the pain subsides my goal will be get into the best physical shape as possible, so i can finally play with my son, and to restart the job I love of being a fishing captain. It will be better then ever! I want this surgery right now, so I can be back on the water by later summer, and prepare for the busy season and hopefully start fishing some serious tournaments.

Hopefully that call comes soon, but not like at 2 in the morning....I am hoping for a morning or afternoon call like before. Driving 3 hours at 2 am might be rough. Thanks for all the support and emails, I love to get them. Thank you !

First dry run

This past Saturday we were shocked when the mayo clinic called at 2pm requesting us get to the hospital as they may have a donor for me. We quickly grabbed some things, I told my son how much I loved him, while crying at the same time. I told him it was time for my big surgery and that I loved him more then anything...the look I got back made me realize my 3year old son knew what was happening. Thought he was going to cry, he just hugged me really hard. During our 3 hour drive we ran into heavy traffic and of course a major road shut down on i95 for a brush fire...40 min detour...but somehow my wife showed she has her driving skills from her days as a EMT. We arrived at mayo at 5pm. We were immediately sent to our room in ICU, where iv's we started, X-rays, blood work, iv antibiotics, breathing treatments, and more. Met many members of the team and my nurse. Who was awesome! I had so many emotions flowing through my head I couldn't cry, laugh, or really talk, I just looked at my beautiful wife and remembered all the good times since we met 10 yrs ago. She is my rock and the one that will keep me moving forward after the surgery. After many hours of waiting the surgery was set for 10pm, and the staff coming to move me to OR at 935. I was pretty ready, but five minutes before the time, the team doctor came in with bad news. After viewing the donors lungs, they determined there may have been issues with the right side and therefore canceled the surgery. They call this a dry run. I call it another anxiety attach waiting to happen. Going through the drive and the emotions will be hard again. I am looking forward to all the amazing things my body will go through after surgery, but not looking forward to the initial pain and being intubated when I am waken up. So we are home back on the list waiting for another call. God bless the teams and the donor and the donor's family!

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.

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!