|My struggle to keep breathing started 8 years ago, at age 41. I had been married for almost a hole year then, eleven months to be exact. At the time we were living with my dad. I had already been sick for about ten days. With what I thought was just a very bad cold. However my problem was much worse then any cold or flu I ever had. before..
The night this all started I'll never forget as long as I live, it was a Sunday night and most of my family went to church as usual, but I stayed home with my wife. As the evening passed it became harder for me to breath and as I remember first I started coughing non stop, very hard for much longer then any normal cold or even the worst flu. Second, without any warning I suddenly began breathing very rappidly and out of my control, i tried everything to slow my breathing down but could not do so, At that point I thought I was fast losing my ability to breath, I felt as if I was going to die. So as soon as I could cetch half a breath I told my wife to call a abulance.
I found out the hard way just how sick I was after 3 weeks in the hospital and coming so close to death one more time. I was also told if I had waited only 4 more hours to go get help I would have died. At the time we had no idea how sick I was or why. However not long after I was admited the doctor eccplained to us that I was much sicker then anybody thought. He told me something that was very shocking and so scarry for me to hear, nobody ever botherd to tell me about ths possibility. I thought that I already knew all there was to know about cerebral palsy but, boy was I very supprised.
I didn't know that some people who have cerebral palsy start losing their lung funtion after they reach the age of 40 years old. I now understand the after affects of this situation because I live with this day in and day out, So far no doctor has ever eccplained what causes this situation to occour.
I came home from the hospital with 4 machines that help me keep on breathing. They 1 black Bipap that is connected to a oxyegen concentrator. That I should use everyday but I do not because I hate the machines. Originally my doctor wanted me to use the machines while sleepping but I have never been able to handle that even after trying very hard for the first few years. The sounds of those machindes and the feeling of air blowing on me because I have to wear a mask, always keeps me awake no matter what I have tried to do to stop that. When I finally told the doctor how much trouble I have sleepping that way, he said it would be okay if I did my treatment while watching tellevison at least 4 hours a day. Everyday, sick or well I should use the machines but I don't or can't always do it for several different reasons. Normally when I do use the machines I split the time into only 2 hour segments at a time because that is the only way I can handle this without going completely crazy!!I really hate using these machines but my lungs are now to weak to work normally without them.
Machine # 2 my nebulizer, with two medications in it at the same time witch I should 4 times a day. However that can also be hard to do on time, every 6 hours and that can make it really tuff to live a normal life. doesn't leave much time for any fun in life, if you stick to the time schedule always.
Machine # 3 my portable suction witch helps me keep my nose and throat clear from phlem, so hopefully I don't choak to death. At times I have had to sleep with the machine right next to me the noise of that machine and the amount of phlem coming out of my body can mae it very hard to get any sleep and sometimes I feel as if I am going to die.
Last but not least ,Machine # 4 The big blue monster, that's what I call it. At the hospital they call it by two other names. Cough Olater, or a Cough Assist Machine. This machine rushes air down your throat so quick and hard that it takes your breath away, plus you cough until you either throw up some phlem or feel like passing out. In 8 years I have only used this machine twice at home and I thank God for thaet. I hate to use the machine because it can hurt if used for a very long period of time, When I first saw all those machines in my hospital room I felt overcome with a lot of fear and worry. So the first question I asked the doctor was" How long do you think I will be able to live like this. He said I could live a normal long life, if I stuck to all the treatments." Since then other doctors have told me that I might be able to reach around the age of 65 years old. In the years to come as my condition gets worse I will be on oxygen 24 hours a day and that will really suck. However if that turns out to be a part of Gods plan for my life, he will help me and the family find a way to handle that. My Lord and Savior Jesus Christ has never let me down and I am very sure he won't start now, when he knows I need him the most Understand I am not at all afraid to die but as long as I have family and friends here who love me, I will continue "My Struggle To Keep Breathing" and my 4Wheels will keep rolling through life until Jesus puts my breaks on.