For many years I honestly wondered 'what is was like when CF finally kills you'. It may seem a little bizarre and kinda twisted, but I wanted to know. I never really got a straight answer. I wanted to know what patients went through and how the hospital/Doctors handled it. I have a good friend who did know. . .she had experienced the passing of friends and unfortunately siblings. She was the only one who shared a glimpse of what I would experience 'some day'. Because I could never get a straight answer or a very general answer. . . .I would like to share what it's like to DIE of Cystic Fibrosis. If you don't want to know, if you're not asking yourself the same questions I did years ago, then don't read past this point.
First off, I believed it would never happen to me. I had MANY misconceptions of how and more importantly 'why' CF patients died. I thought they all chose to 'give up' and that is what caused their health to decline which lead to death. I really honestly didn't see CF for what it is, or what it is capable of doing. For a lot of reasons that is a good thing, but it also gave me a misguided look at how CF kills. When I was in my early 20's I was probably the healthiest I had ever been with CF lungs. I swam regularly, taught swim lessons from 7am-10:45am then worked from 11am-5am as a carhop. I did that five days a week. My weight was good and my life was wonderful. It was then that I came across a story of a woman with Cystic Fibrosis who described a day in her life. As I read her words: "I get up around 2pm and I can't do much. My bath is the highlight of my day", I immediately put an unfair judgment on her. I was sure that she was capable of more and had decided to let CF take over. I thought she needed to take control of her life and health back. . . . . It would be about 8 years later before I learned the error in my judgments.
Most CFers know that going on full time oxygen is not a good sign. That, in itself, was a giant hurdle in my life & happiness. But I am going to skip ahead to the weeks before CF literally was killing me. This was a day in my life:
"I sleep all the time, I have no energy. Just putting on my clothes seems like an unbearable task that I know I will be exhausted after accomplishing. I sleep in until around 2pm. I try to stay active and for the most part. I can still do a few things, but not many without suffering for it later. It takes up too much energy to carry on a conversation, so I voluntarily stay out of conversations if I can. It is painful. I am in pain physically and emotionally. The highlight of my day is when I can sit in a warm bath and the water hides my tears. I am scared, I am sad, I know I am dying. Just the few seconds it takes to change my oxygen tanks I can feel my life trying to slip away. I want this to end. I hold on to what little hope I have. I am strong on the outside for those around me but I feel like I am a burden. I am dying from the inside out and I have no control over it." It is still painful to relive the memories of those days and it still hurts to the point that it brings me to tears.
That is just a few of the things. . . I had no control how fast CF took my health away from me. No matter what I did, my body was not going to recover. My lungs were reaching their expiration date. I knew then that all my ideas and thoughts on how CF kills were previously wrong.
The end, the very end. . . .I was anxious, I was fearful that I would go to sleep and Bryan would wake up to my lifeless body. I am pretty sure that what I was experiencing physically was also what CFers before all had gone through. I felt like I was drowning and many times would only cough up mouthfulls of blood. That was only one of my problems. When the lungs can no longer function and the gas exchange is no longer working properly, then CF lungs are not capable of releasing the carbon dioxide from your body. The carbon dioxide builds up in your body and begins to kill you. Also my resting heart rate was around 125-130 and my CO2 levels became toxic despite being on a bipap machine for months and months. The hospital could not reduce them. I became disoriented, confused, VERY tired. . . .I experienced dimentia until finally I became unresponsive. That is when the hospital/doctors would have given Bryan the decision to ventilate me or to let them make me comfortable (morphine, etc) until. . . . . . I passed away. For me however, transplant was offered and I was ventilated to keep me alive while I waited for new lungs.
Now I am not a doctor or a nurse and I can't say for sure that this how it will always be done, but from what I heard from others and my own experience. . . I would say I got my questions answered and I didn't like the truth.
*Note- A Double Lung Transplant is the only option to avoid going through some of this. Most centers will list patients before they are THIS sick. If patients opt out of transplant, then it is likely they will experience some or all of what I did. I was given a Miracle I have never doubted that! I cannot wish for anything greater than a cure for this disease so no one else has to suffer this.
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