Monday, January 11, 2010


I spent only 10 days in the hospital this time. I feel the best I have felt in a long time. I did a PFT and my FEV1 was 24%. I also had 2 CT scans one of my brain and the other my lungs. Good news, my brain is there and normal, bad news, my sinuses are full and infected. No surgery though cause my lungs are not strong enough for general anesthetic. The CT of my lungs, good news they are still there with no deep pockets of fluid or caverns of any kind, bad news, bronchiectisis(?) inflamed and enlarged bronchi which are painful at times. My nurses were awesome though and my Dr is top notch as usual.

Now I am fighting with Osco pharmacy and express scripts to get my TOBI and Pulmozyme covered and either picked up today or sent to me by Wednesday. I spend a hour and a half to get things kind of sorted them out. I am waiting for Osco to call back and let me know we are good to go. This all makes me wonder how hard they are going to be when I get my transplant. I'm already sweating about it.

Always, Ken

Tuesday, January 5, 2010

It's 2010

Wow it's the first blog of 2010 for me. So much has happened since my last blog post. Christmas, my birthday, and the new year. I was in the hospital for all but Christmas. I was feeling a little sick but more so I was tired and not really feeling like me. We call this feeling "baseline". I was afraid if I waited any longer I would be sick and really really feeling bad. Once you start feeling too bad when your lungs only work at 28% it is really hard to "turn the corner"(which means to start feeling better). So I thought that I would avoid a deadly situation and come into the hospital. The good news is that I am feeling better,but not back to my baseline.

I also have had this feeling of being light headed and dizzy. I was sure it was related to my increasing CO2 level in my blood but the doctor isn't 100% sure so we did a CT scan of my brain. I am sure it is going to turn out to be nothing but I can't help but to wonder.

To add to all of the health business my wife and I are constantly trying to save money and pay bills. We can never seem to get on the positive side of the deal. I am very patient when it comes to our financial situation. My wife deserves so much better. We have made some very poor choices financially when I was able to work, and never planned for the day when I couldn't work any more. Now she pays the price by having to work harder and for less money to make sure we can pay our bills. Simple things like buying groceries and even just going to the movies to get away from life for a few hours.

I love my wife with all my heart and she has done so much to support me in the 8 years we have been together. She really is the center of my world. I will pay her back some day for all she has done.