New lungs!

Ihave been blessed with new lungs this past week. God bless the donor and the family. Things for me look very good right now, and it am recovering nicely. 

Back in the hospital

Another fast developed lung infection worsened even quicker because of catching a cold on top of it, caused me another hospital admission late this week. After a few days I am showing a little improvement but I still feel pretty sick to say the least. My body and mind are fighting harder then ever until a set of lungs becomes available, but honestly everyone especially myself can see time is not on my side, I am getting worse, and they only thing that will keep me alive are lungs....and unless that happens soon. Not sure how much longer my mind and body will last. So let's all pray I get lungs, I still have to much to live for and accomplish! 

Changes have and will continue to happen

A lot has happened these past few weeks. I have deactivated my listing for a double lung transplant with the Mayo clinic. I am only listed now with Florida hospital transplant center. I really do not believe this decision will impact me in a negative way. I am still on the top of the list at Florida hospital, and deactivating my status at the Mayo will not impact my standing on the national list. In fact I am more confident then ever with the entire team at Florida hospital. They are a smaller and newer center, but the surgeons have combined over 30 yrs of transplant experience. If anything, having a smaller center means I know exactly who will be doing the surgery and because there are not hundreds of patients being seen by these doctors, I am getting faster answers and action when I have a health related event happen. I will also be able to recover from my house, so all the issues and concerns we had about having to relocate are no longer a issue. Since I deactivated my listing, I have had a huge weight lifted off my shoulders. I will now be able to focus on my recovery instead of worrying about the dozens of major factors with having to relocate to Jacksonville. 

Last week I was asked by Florida hospitals PR team to do a live interview on Orlando's Fox 35 morning show. The story was focused on getting more people to become organ donors, and then I was interviewed live in the studio about what it's been like having been waiting for lungs. Here's a link to the story http://www.youtube.com/watch?v=Jp9FUrL5I20

It's been one full year since my doctor made the official request for a lung transplant evaluation. So doing that interview really reminded my wife and I what a fight it has been. It also shows how strong we are as a couple, it's not always perfect but I wouldn't have made it this far without her fighting CF right beside me. It was a nice morale booster, I have been a little down lately because we are getting close to the 9 month mark of waiting

Honestly this process and these past 12 months have really shown me what love really means, and what friendship really means. People have really shown their true colors to my wife and I, and I can say I have already begun reevaluating who and what my priorities will be in the near future and post transplant.  

One thing I can tell you will continue is what this website and blog was intended for....fishing. I will come back to fishing once I am recovered enough. Since I will look healthier and feel better I will be changing my boat wrap and logo around. Start fresh, but it will still be the great fishing and lake I was on. Having better health and even more confidence with my fishing abilities, will make for a great experience for my clients. I have been working on technique, learning more about large mouth bass and their habits, and some fun stuff other charter captains won't be able to do or just don't do. I hope to have to initial design work done this week, so keep an eye out for some updates. 

Like I say at the end of all my entries, hopefully this surgery happens soon. 

It's my anniversary!

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. 

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.