Benefit Information

Like I mentioned before, my family is putting together a benefit for me to help with the expenses for my upcoming double lung transplant.  This is going to help with all the expenses that go along with getting this transplant.  The surgery itself is paid for by insurance, but we are not getting any help with any other expenses.  Right now I have to keep going back for follow ups and tests every three months.  When I have the surgery itself Jason has to live there while I am in the hospital.  After I am released I am going to have to travel to NYC once a week for appointments for about 10 to 12 weeks.  We have also heard of a few additional costs that might happen.  We have planned as much as we can, but there are always things that you don't expect and we want to be as ready as possible.  We went to the bank today and opened up a separate account just for the transplant.

The benefit should be a lot of fun.  We have it set to be on September 22nd. There is going to be a chicken dinner that comes with two sides and a choice of dessert.  These desserts include a variety of different baked goods including cupcakes, zucchini bread, cookies, etc.  To drink there will be pop, beer and coffee.  For some entertainment there is going to be a live band playing called Mood Swing.  They are a local band from Syracuse, New York. The lead singer, Danielle Rausa, grew up here in Western New York. Through out the event there will also be tickets being sold for a 50/50 and the basket raffle (Chinese auction).  Right now my family is still working on getting donations from businesses, family and friends to make up some baskets.  I want to thank everyone so far for their support.  This includes the donations, offers to help out with the benefit, offers to help me now and after the transplant and those who are just there to listen and talk to.  I am really looking forward to this transplant.  I am very excited about it, but at the same time the whole thing is a little frightening and stressful.  This benefit has definitely help alleviate some of that stress.  I have no idea when the transplant will occur, but hopefully it will happen soon.  In the meantime I just wait and continue to be thankful for all I have and everyone's generosity through this time.

Yesterday was a good day and I was able to go out with my Aunt and have dinner.  I needed my O2 but I was feeling pretty good otherwise.  Today however, I crashed.  I was feeling alright during the day, but once evening hit I fell apart.  All of a sudden I could not breathe, I felt really tired, my back started hurting, and I started feeling really cold.  I knew I was getting a fever so I took some Motrin.  Two hours after taking that I still have a 101.7 fever and it didn't touch the pain in the back. Sometimes I have no idea what causes these sudden crashes.  I am thinking the weather has a big thing to do with it, but I haven't been able to correctly predict when this is going to happen.  I am finishing up my night time routine and then I am going to go straight to bed.  I will have Jason rub my back for a few minutes just to relax it and hopefully that will help me to sleep tonight.  Well the last treatment just finished so I am off to bed. To a better morning.....