Like I said tomorrow is my wedding anniversary, and I hope my gift could be a stronger and better man then the one that said I do 9 years ago. Our lives, our plans have been on hold for far too long.
Tuesday, August 20, 2013
Tomorrow is my wife and I, 9th wedding anniversary. It has been the toughest year in our marriage, battling day after day to get this lung transplant and towards getting a whole new life. One of the key factors these past few days, is that I was accepted and listed for double lung transplant with a second lung transplant team in Orlando. So as of today I am listed at Mayo Clinic in Jacksonville and Florida Hospital Orlando. This does double my chances of getting a matching donor at the moment, but there maybe a decision to drop the Mayo and put all my eggs in the Orlando team's basket. Why you may ask....well this past year has been a battle since day one with the Mayo. As much as I respect what they have accomplished for others, my experience was far from what I expected and have heard. Especially after being welcomed with open arms and being shown a huge sense of urgency to getting donor lungs from the Orlando team. What took months to accomplish at the Mayo clinic, only took two weeks with Florida Hospital Orlando. Like I said, there has been a huge sense of urgency with the surgeons at Florida hospital. I know my disease is worsening, and they do too. Time is not on my side, and I am not affraid to hear that from my doctors. The reality is its getting harder and harder to maintain my body for this surgery and at some point my body is going to hit that wall, and I wont be able to recover and/or not be able to survive the surgery. The Orlando team isn't affraid of saying what I was thinking, and for the first time since this all started a year ago, I feel like I have people working for me. With the mayo, I was in a round about way, and at one point told that they were doing my wife and I a favor by even agreeing to listing me. It shouldn't feel like I was doing a business deal with the mob, and at some points I was looked down upon like someone that hasn't made the effort for 33 yrs to take care of themselves. Some of the Mayo's pre and post transplant expectastions have been and are unrealistic for someone with a wife that has a career, a 4 year old child, a mortgage, plus other responsibilities. The Orlando team embraces those factors and very quickly has proven how willing they are to make sure our lives won't be devistated by the surgery and recovery. For the past week I have felt a huge weight lifted off my shoulders just from the support I have been given from the Orlando team. I have actually slept every night this week. For the last 8 months I think I have been maybe getting 3 hrs a night. My decision isn't final with what I will do with my status at the Mayo, but I am hoping that a call comes tonight or any night from the Orlando team.