Sunday, December 6, 2009


What a beautiful day it is today, besides being cold anyway.

Yesterday was a challenging day. It is truly hard to be honest with the ones you love. In life when you are faced with challenges, whether they are financial, medical, or anything else it is best to be honest with yourself first and then be honest with the ones you love.

Facing this lung transplant has brought out some underlying issues. Issues that I have about face to face communication. It has always been hard for me to tell the people that are close to me what is going on with me both physically and mentally. Being a fairly "healthy" Cystic Fibrosis (CF) patient it is very hard for people to understand the limits I face now that I am sick. 28% lung capacity really can put a damper on everything you do. I now have to find a way to accomplish simple goals in my day, but I just push through and do what has to be done. This takes a lot of focus and sometimes gets in the way of everyday relationships. It is almost like living with blinders on. All I do is focus on my health and sometimes I neglect my wife and my stepson. I have to remind myself all the time I do have them to consider with every choice I make. They are going through this process with me and I know it is not easy. I have made the choice to focus more on their needs throughout this whole transplant experience.

My family(parents, sisters, and brother) are a different story. They don't live with me everyday to see the struggles I have. I know they love me and want to see me healthy, but I am afraid that makes them not understand how serious this transplant procedure is. I have a 50/50 shot to make it alive through this surgery. You get 1 shot for the initial surgery if it is a success you die. There is not life support or artificial lungs. Everyday I am alive counts. I can't just sit here like I do and do nothing. What if this is my last holiday or even my last day? This is the reality I am living in. I am certain that making the choice to go through the transplant surgery is the right choice. I am also aware of the harsh reality that comes with this choice, but I am not sure my family knows.

I know life goes on with or without me. I just want to be around as long as I can. I want to be able to go running and have fun. This will give me that option.


1 comment:

  1. Wow Ken - I can really relate to this post. I am at 38% and not yet pre-transplant but I totally understand how hard it is to be honest with myself about how I am doing and how especially hard it is to be honest with my husband. I hate to "burden" him, even though he got in this knowing full well what would happen and WANTS to know how I am doing and feeling. I, too, have been "healthy" relatively speaking for a long time, so now that CF is really starting to take hold of my life it is hard for me to deal with and hard for friends and long distance family to understand. I hope you get your new lungs soon and that you have a successful surgery.