It is a good thing that Cystic Fibrosis(CF) is getting some TV time. I can count 5 times that cf has been on TV; Alex the life of a child(TV movie), Touched by an angel, some made for TV movie with Luke Perry, ER, MTV's the real world(yeah right!), and last nights episode of Mercy on NBC.
It is a bad thing that none of the shows accurately show the disease. I understand its TV and what not but come on! Really!? How hard can it be to find a willing CF patient to go on TV and play a role that they were born to play? I would be more than willing to do it. I hope that the next time I see a CF patient on TV it is more realistic.
Thursday, December 10, 2009
Sunday, December 6, 2009
12/06/09
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.
Always,
Ken
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.
Always,
Ken
Friday, December 4, 2009
12/04/09
Today is my first official blog post. It is also almost one year since being placed on the active lung transplant list. This has been a year of realization for many. My self and my wife Stephanie have been on a roller coaster of emotion.
The realization that I am sick has taken more than 2 years to sink in. Simple things now become a big, big deal. Simple things like taking a shower, brushing my teeth, shaving and sometimes even using the bathroom. It has been such a drastic change we are not yet used to it. Not only that but I tend to alienate my family and friends. It's a self imposed isolation in a way. I feel better when I am at home and comfortable. Venturing out is a big hassle with dragging my oxygen around, getting short of breath, and getting worn out, it gets very hard.
It is not only hard physically but mentally. Not to mention the stress of not being able to do the things you loved. Things like working, family outings, and hanging out with friends. There isn't any way to express to people you love so they can really understand what you are feeling or thinking. This lack of understanding can cause relationships to suffer. ALL RELATIONSHIPS!!
What is the solution to this? There isn't a solution. You can only do so much before you have to trust other people to understand what you are going through isn't a choice. The other solution is trying to eliminate all unnecessary stress and making daily activities somewhat easier. Today will be the first day since I have been on the transplant list that I choose to do that. Stay tuned to find out how.
Aways,
Ken
The realization that I am sick has taken more than 2 years to sink in. Simple things now become a big, big deal. Simple things like taking a shower, brushing my teeth, shaving and sometimes even using the bathroom. It has been such a drastic change we are not yet used to it. Not only that but I tend to alienate my family and friends. It's a self imposed isolation in a way. I feel better when I am at home and comfortable. Venturing out is a big hassle with dragging my oxygen around, getting short of breath, and getting worn out, it gets very hard.
It is not only hard physically but mentally. Not to mention the stress of not being able to do the things you loved. Things like working, family outings, and hanging out with friends. There isn't any way to express to people you love so they can really understand what you are feeling or thinking. This lack of understanding can cause relationships to suffer. ALL RELATIONSHIPS!!
What is the solution to this? There isn't a solution. You can only do so much before you have to trust other people to understand what you are going through isn't a choice. The other solution is trying to eliminate all unnecessary stress and making daily activities somewhat easier. Today will be the first day since I have been on the transplant list that I choose to do that. Stay tuned to find out how.
Aways,
Ken
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