Orlando transplant doctor appointment results

Some good and bad news from today's appointment with the Florida transplant doctor. Bad news: I need to do the 2 week evaluation process sooner then later. My fev1 which is the main number used to define lung function is at 22%. When this number stays below 30% for a year that number will more then likely not go back up. So I am close to being under the 30% mark for a year. The only shot at increasing this number will be through Pulmonary rehab. This will be critical for me to gain as much function back as possible, and this week was wasted thanks to the rehab facility not calling me or my doctor back after a week a calling them. So because they are only there Tuesdays and Thursdays, the earliest I can start will be a week from now. He also said is that this transplant will have to happen no matter what at some point, we are all hoping later then sooner. Also not having the evaluation done, and one bad infection could land me into the ICU and having to be intubated on a ventilator. At that point, I would not be able to complete the evaluation phase, and would likely die shortly after.

The good news: despite being at 22% he would not list me right now, because I can still do some physical activity and not in need of oxygen full time. That being said, i do need oxygen at night, during longer walks, even doing things like cleaning the house. Pretty much anything I do physical for more then 6 minutes, my oxygen level drops into the low 80's unless i have the oxygen on. By allowing my oxygen to drop this low, it causes more damage to my heart and could mean that at some point I would need a lung and heart transplant. So I always need to have it nearby and use it when I feel short of breath, even if its just for a few minutes.
Another good thing is that while I was admitted three weeks ago, a good majority of the testing needed was completed. So other then some more blood work, some X-rays, the only major procedure is the heart cath test, which is the worst part of the eval. Other then that it is a matter of finding a team and facility I like and I feel I will have the best chance with. Then it's meeting with all of that teams people and working out the financial aspects. Still a lot of work, but the two week eval could only be a weeks worth. I am still waiting to hear from Mayo clinic which should hopefully be next week to schedule the initial visit. Depending how i feel with Mayo, i still might meet with the entire Orlando team. I had a better vibe meeting with Dr. Pelaez today then I did during my admission a few weeks ago. He was very honest and answered everything we asked. The only thing holding me back on going with them is that the team has only done 3 transplants together. They have many many surgeries combined just not together here in Orlando. The doctor also said that I do need to gain some weight, I am hoping to add another 15 lbs plus some muscle mass. He was happy to see my abdominal pain was better and that I also started insulin. My osteoporosis is also severe, and must be addressed, but my endo will do a IV medication next month to help improve that almost immediately once administered. The side effect to that med is usually severe joint pain for several days after the infusion.

So.... I did have some relief after today but overall it is a lot of bad with some good....I am still pretty much depressed, scared, and trying to come to terms with a lot of stuff. Those feelings are not going to ever change, it is only going to get harder as time goes on so I have to learn how to manage all of that stuff. I am eager to start rehab and bust my ass hard to gain as much lung function as possible. I have also realized that rehab is not going to be a short term gig, but something I will and willing to have to do for the rest of my life. I have come to terms with the realization that I can no longer do a million things like I used to; running a business, foundation, and being the best father and husband as possible. I know my limits now, and those limits mean i cannot please everyone all the time like I have over the years. Everything I do from this point needs to be in my best interest so I can be around for Michele and Casey as long as possible. They are what gives my life meaning and purpose. So the foundation will have to stay on the back burner until I can find someone to run it, fishing will have to stay next to it until I can gain some lung function and muscle to be able to load and unload the boat from the trailer. I need to work out, and rest a lot. Just getting Casey ready for school in the morning and getting him there wipes me out. Playing with him for an hour even wipes me out, so until I can do that stuff all day, everything else will have to wait. So thanks for all the help from those that are and for all those prayers. I will still need a lot of both for a long while.